Booferd

'Tis the Season

2012-01-22T20:52:00.004-07:00

meh.

Two cars back I had a Nissan Pathfinder in lovely maroon, which was a wonderful car for that slightly more active and young part of my life. I had it from the time I was 17 until right after Charlotte was born, It was great in the canyons and okay in the snow, and had some delightful quirks. One of these was the electrical system, which sometimes worked correctly, and sometimes presented fun surprises like resetting the clock whenever you opened the door, and for awhile, setting off the alarm if you didn't start the car within 10 seconds of climbing in. The reason I mention this is the other day I climbed into my mom van after working at the hospital all day, and started pawing through my purse looking for my keys. I couldn't find them in the dark of the parking garage and found myself quickly moving into anxiety bordering on panic. My fingers closed over my armless Buzz Lightyear key chain and I almost ripped the lining out of purse trying to get the keys into the ignition before....
...Oh yeah. That was 2 cars and eight years ago. Mom van doesn't throw itself into a wailing whooping fit if you don't immediately prove you have the key upon entering. Funny how things like that come back to you though. Part of you always remembers.
Even now, 13 years since I graduated from high school, the approach of the beginning of June still brings a happy nervous exciting tense feeling, as if 3 months of rollerblading and sleeping in, and toilet papering are on the horizon. Then it always turns out I'm still expected to come to work even after June 6th (that date just always sticks out in my mind) has come and gone. And rollerblading is apparently not cool anymore.
And so, why would I expect anything different surrounding this time of year? On that deep visceral, car alarm, summer vacation level, this time of year is about cherishing every moment, even the awful ones, and about tears and grief and loss. It is as much about death and being left behind as Christmas is about joy and life. For me, anyway.
Naturally I'm going to be a little down. And late for work, or unable to sleep, or absolutely exhausted, or annoyed, or cranky, or quiet, or not very social, or thoughtless, or sobbing my eyes out with my cheek pressed against a cold granite headstone on a windy Sunday night. 'Tis the Season.
For the few years we had Charlotte with us, these few weeks were about desperately awaiting the spring, when the air would be clear and the flu would fade away, and all of us, especially Charlotte, could breath a little easier. And then came the year that would be her last, and the winter had been rough, and I felt like we were just around the corner from relief. Well, she was. She was taken quickly by a common virus after a long, slow, barely perceptible decline. Then just two years later we were going through the very painful and strange but holy weeks of trying to make Lily's life peaceful and comfy as she slipped away from us.

And that was only a year ago. Not eight. Not thirteen. I will always have this heaviness during these cold, gray, tender weeks. It's natural and it's okay. But I do apologize for being somewhat cocooned around myself at the moment. It's self preservation. And I'm not laying in the fetal position crying all day. I'm just keeping quiet. I'm fine, and functioning and happy. I'm just a little sad.

My PRK Surgery or One Wild Weekend"

2012-01-08T21:27:00.001-07:00

For Christmas this year, my parents offered to pay for one eye's worth of corrective vision surgery for each child. With a deal like that I saw no reason not to undergo PRK surgery last thursday. I was not a candidate for LASIK due to steep corneas, or some jargon, but I was good to go for the older, more painful PRK surgery.
I'm not saying it was a mistake, but at this point i'm not recommending it. The procedure itself was fine, made almost pleasant with a little valium and getting to lay down for a few minutes. The only part that bothered me was when the nurse said "let's just get that little bit of epithelium out of your eye" and did a little scraping motion over my taped open eyeball. Ew.
But I went home excited to climb into bed and listen blindly to books on tape on my ipod for a couple days in the dark. "Every mother's dream!" my own mother declared. Not that I disagree.
Once in bed I noticed some discomfort but quickly fell asleep trying to pay attention to the rather studious 1776. Zar was going to go pick up my pain meds and eye drops and then pick up the kids from my mothers, and then I figured we would get some burritos and have a fabulous long weekend together.
The next thing I remember was waking up in quickly intensifying pain. As if someone were rubbing sandpaper against my eyeballs. At this point I already had the residual valium and two Lortabs on board, and of course, was blind, but I made it downstairs to paw through the medicine cabinet looking for some sort of relief. I opened the freezer and grabbed what I thought was a bag of peas but turned out to be Ella's weird chemical "Make your own dehydrated snow". In any case I rushed back upstairs, located my phone and ordered it to call my husband and in turn ordered him to rush home with my drugs.
"You can't have any more drugs yet," he replied.
"NOT DRUGS, DROPS! GET HOME NOW!"
Then I lay keening on the bathroom floor in the dark waiting for him. The next few hours, or really, the next couple days are blur, as I was being fed around the clock Lortab with messed with my sense of time but did not seem to touch the pain, which progressed to feeling as though my eyelids were made of shards of glass, or razor blades, and my tears were lemon juice. There was moaning, wailing, and swearing, there was banging of heads against the floor. At some point fairly early on I yelled at Zar to go find my "Pro Something Pills" which knocked me out for two days during my pregnancy with Ella. I told Zar I was nauseous, as Zar does not believe in taking a drug just to be knocked out. Although in this case I'm sure he would have been cool with it. In any case, thiis the only reason I'm not dead now. Seriously, it was the WORST physical pain I have ever experienced, and I stand by my hysterical raging of two days ago that people in this kind of pain should be sedated in a hospital, not sent home with a headache pill, swear swear swear. C-section recovery has NOTHING on this, except when Ella jumped on my tummy right after Lily was born and I was certain my innards had exploded all over my hospital room. It was about like that, if the toddler continued to jump on the incision and I had no power to stop it. Yes, that bad, yes, if I had a gun, I would have used it. In hindsight maybe we should have called the doctor, the one who mentioned "mild discomfort." I hope they have me fill out a survey.
Here's a few other details I recall:
Zar trying to force me to wear my sunglasses while in bed to keep me from rubbing my eyes, and me throwing them off and screaming abusively.
Zar putting cold compresses on my face and me throwing them off screaming "IT DOESN'T HELP" and swearing abusively,
Trying to act nice and calm in front of Ella, but losing it and wailing "MOMMY NEEDS MORE MEDICINE!" and hearing her burst into tears, and then, heartbreak, her not wanting to sleep with me that night.
Zar ordering me to open my eyes for my drops and screaming abusively, but I'm sure you guessed that.
Ella coming in and piling her toys on me--monkey, Uno Moo Game, various plastic balls, penguin, and plastic foods to make me feel better once I had fallen into an exhausted drugged out heap.
Thinking I had better have x-ray vision once this is over.

Well, the pain is gone, and I can squint well enough to type somewhat reliably. But not drive. And certainly not be a useful employee tomorrow. But I'm going anyway. I have to pay for my other eye. My vision should continue to improve over the next few days and reach full improvement in six months...but really...didn't I look kinda cute in glasses?

A Sleepover with Ella

2011-12-31T13:08:00.002-07:00

My hubs is out of town for a certain football game and I'm home with my girls for the New Year. It's fine. I'm on-call for hospital emergencies and it's nice to have that as excuse to not plan anything extravagant for the New Year. Can't get dressed. Am on call.

Last night Ava went to bed and Ella and I stayed up to make Oreo pops for our small New Years get together. Afterwards we went upstairs, read some stories, and at 9:45 I said "Oops! Time for bed!" Ella looked doubtful but I turned out the light and snuggled down. I do love my sleep.

Ella tossed and turned as usual and made many deep annoyed sighing sounds.

Then:

Ella: Mom! I'm getting scared! Of monsters!

Mom: Don't worry. There are no monsters in our house. In fact there are no monsters anywhere. And you've got mommy right here.

Ella: Yeah...mommy is the best.

Mom: uh huh.

Ella: Say "thank you dear."

Mom: Thank you dear.

Ella: Monsters aren't in the house. Only in the forest in the dark.

Mom: No, do you know what lives in the forest? Deer. And squirrels and chipmunks and bunnies.

Ella: But monsters are big! And are circles and squares and hexagons and, and....rectangles! And have a face.

Mom: ....Wow. Well that sounds like pretend to me. But there are no monsters and let's go sleep. It's very late.

...

Ella: Mom?

Mom: Yes dear?

Ella: When I get big I'm going to be a mommy. Just like you.

Mom: Good idea. Do you want to have a job, too, like mommy?

Ella: A job? What job?

Mom: You know, how mommy is a nurse, and goes to work?
Ella: Oh, work. Yeah, I want to work.

Mom: Well what do you want to do? You could be a nurse like mommy, which is great because it's flexible and in demand, or you could be a teacher, or write books, or work in the zoo, or cook in a restaurant, or anything at all.

Ella: I want to hang upside down. Like a possum.

Mom: Huh.

Ella: NO, no, like a monkey.

Mom: Huh. Well you could work in a zoo with monkeys...

Ella: (starting to cry) Noooo I want to BE a monkey!

Mom: Well....

Ella: (weeping) Please!

Mom: Okay you can be whatever you want to be. Let's go to sleep.

Ella: I just want to hang upside down.

Mom: Well good thing you are in gymnastics. That's a start. Sleepy time.

...

Ella: Mom?

Mom: hhmmph?

Ella: I want to snuggle the kitty.

Mom: Go for it. Good luck.

Ella: crawling over mom, petting kitty. "Hi Carmie."

...

Ella: WHAT, KITTY? WHAT? WHAT? WHAT, KITTY?

Mom: What's up now?

Ella: Kitty is growling at me.

Mom: Oh hun that's not growling, that's purring. It means she is happy. Haven't you heard purring before?

Ella: She goes "Grrrrr"

Mom: She goes "purrrrrr." Go to sleep.

...

Ella: GRRRRRR!

...

Ella: GRRRRRRRRRRRR!

Mom: What's that.

Ella: Just a lion purring. Just go to sleep.

And I did.

This IS my Christmas Card.

2011-12-20T14:01:00.002-07:00

Merry Christmas!

Despite everything, we had a joyful year, and we are having a fun kid centric Christmas Season.

Gingerbread Cookies...

Look at Ava's decorating skills!Ella too....oh...wait...well she did decorate some as well.

See? Well, genetically she's all mom.

Good One. Should have had this printed and mailed out. Darn it, too late.

This game is known as Five Little Monsters.

Aw, both dressed and awake, better take a picture. Of course our 7th family member is included, aka, the TV.

Family 2011 Highlight List

(off the top of my head)

Baby Lily earned her wings on February 6th. Although we miss her and grieve daily, we are so grateful we got to have her at all, and know we will see her again.

Ava turned 1 in May with a big hoopla party, and started to walk!

Erin and Zar continued working at their jobs.

The girls gained a new Aunt, Rachel, married to Erin's brother Cob.

Zar ran the American Fork Canyon half marathon.

Ella started preschool and loves it, (most days) and turned 3.

Ava's favorite words are Apple, Daddy, Minnie Mouse, Thank you, and Happy Shoes.

Ella loves running, singing, Diego, Dinosaur Train, going to the park and the Ipad.

We visited Disneyland in October with close friends and had a wonderful time!

The Utes joined the PAC 12 and Zar was pumped for his most favorite time of the year. The girls have been indoctrinated to recognize the drum and feather and yell "Go Utes!"

Erin turned 31, Zar turned 33, and we booked our trip to Glacier next year for our ten year anniversary!

Merry Christmas!

The Most Wonderful Time of the Year

2011-12-08T17:05:00.007-07:00

Festival of Trees 2011

Super Cooperative kids taking sweet cousins picture

Zar asked me yesterday if I had simply given up blogging. I said yes, sorta, but that's not true. It's just one of those things that was much easier to get to back when my kids took multiple naps and none were mobile. Plus our lives contain much less life and death drama than it used to.

However we have been enjoying this most wonderful time of the year.

My sister and nieces were in town for Thanksgiving and it's always wonderful to spend time with them. We went Black Friday shopping and Allison almost vomited during Twilight, and we compared dull-faced Santa pictures. Tried in vain for more another Christmas card picture, but I think it's just not to be this year. Zar and I ran the Cold Turkey 5K on Thanksgiving morning and it was way fun. Not so sure I would have had such fun had it been snowing or even much colder, but it was perfect conditions this year. Of course since then neither of us have ran a step, except to catch a child and deposit them back on the Calm Down Stair.

The Festival of Trees came and went and it was a great experience, as always. The tree turned out differently than I had anticipated but very cute. My sister took better pictures of the tree which won't upload for me. The company Zar works for bought our tree and we are so touched and grateful. I am hoping they let Zar keep the carousel horse as office decor once the season is over. I had told myself I would only do a tree every other year but already I'm thinking of next year and wanting to start all over again. It's a time and financial commitment so if I can talk myself out of it I may go ahead and wait. But it adds so much to the season and is such a wonderful way to honor our girls! We shall see.

In other news I am sicker than I have been in a long time today, but have been blessed that the day has gone by quickly. The goal today was to keep the children from being seriously injured. That's as much as I could handle. So far so good. Zar should be home any moment (PLEASE!) and I'm going to fall into a coma.

Until then.

Those Magical Memories

2011-11-22T14:28:00.003-07:00

I got myself all worked up and excited the past couple weeks over a new tradition I cooked up for my kids. It pretty much sounded like BEST DAY EVER to my 5 year old self, so I decided to start it this year with the girls so by the time they are old enough to really anticipate it they will already have warm fuzzy memories. I called it SUPER SANTA DAY. It included sleeping in (this was added on because it happened to occur today) eating a big eggy breakfast (also today's breakfast request) and then heading for the mall a couple days before Thanksgiving, before things get out of control, and see Santa. This would involve no waiting in line because it's so early and everyone is at the grocery store, plus kids are still in school. (This part will probably need to be altered as years go by, but this year--ideal.) Then we would walk on down to SANTA'S MINI-WORKSHOP aka Build-a-Bear, and each kid could pick out an animal to make and it would be incredible. Then we would make a stop at the Chick-fil-a for my favorite nuggets, and then home for naps and laundry. And then I pretty much avoid the mall until January, or later.

Of course in this fantasy my kids are darling and well-behaved and I am able to use the Santa picture for Christmas cards this year because we were sick on our scheduled family picture day a few weeks ago. They smile like angels and are grateful and sweet.
Here is the resulting Santa Picture:

Not the worst ever, but certainly not one Christmas card worthy. In fact, this is more like those pictures you see of yourself as your get older and think..."Huh. I thought I was cuter." Instead you find yourself looking perplexed and not all that intelligent, and Santa appears to be slumped to one side and ever so slightly creepy.

Santa was also not all that excited about Ella's new Tigger toothbrush she waited all morning to show him, and of course once on his lap she couldn't managed to choke out her request (an umbrella) and Ava screamed bloody murder the moment I stepped out of view. So that was fun. Luckily I'm well seasoned enough as a mom to not bend under pressure and buy the $40 picture package suitable for over the couch framing, and instead sprang for the cheap-o
"Dasher" package, as in "You will "Dash" all your children's Christmas Dreams" for $24.99. Arg. But, happily, no line.

Next on to Build-a-Bear, were I was expecting to drop a chunk of change on Childhood Magic. I had promised myself I would allow Ella to choose whatever bear she wanted, (except the ultra-luxury ones) no matter how offensive it was and even if it had peace signs on it or smelled like stickiness or was something dumb, like a stuffed vegetable or something. However I did stand in front of the stuffed Angry Birds during the choosing process. Ella chose a baby blue fluffy bear, and tried to force the pink one on her sister, but I steered Ava towards the more natural looking bears and she picked out the Midnight Bear, which would have been my fourth choice or so. So far so good.

I didn't understand that the noise maker for putting inside the bear was optional until after Ella had chosen one that sang a verse of "True Colors" so we splurged on that but Ava did not get a noise maker. They enjoyed stuffing the bears and REALLY enjoyed fluffing them in "the bath tub" where they are sprayed with air and brushed, so much so that Ella had to return 4 times to the tub and had to be carried screaming from the store after an hour. Also she chose a Buzz Lightyear costume for her bear, and after she was all dressed in it (and therefore committed to buy) she decided she needed another bath and announced she preferred her bear naked. Ava was thrilled with a striped sweater so I didn't push it. So we made birth certificates we forgot to ask for at the end, and the bears were named "Ella" and "Black Bear" and a mighty fit was thrown when they were put into boxes at the cash register, and then we left. I'm not going to share the grand total on this piece of holiday cheer because my husband reads this.

However, here is the happy at home photo of the girls with their Christmas Bears, or their bottoms anyway, to protect their identity.

Also my husband has hidden my camera, so these were taken with my iphone, aka my birthday and Christmas gift for the rest of my natural life.

Now the kids are taking little naps (we skipped the chicken in the end...boo.) and Ella is topless because she wants to be naked just like her Ella bear, and by the way, her name is now Mickey, you know, because the bear is Ella.

I can't help but think that for all the happy memories we made today, this little preschool place mat will become our treasured 2011 Thanksgiving tradition, and perhaps we should make one with Ava when she wakes up.

Ava even has a matching forehead boo-boo I could put an Ariel band-aid on. I think I will do that. Maybe Super Santa Day should be every-other-year.

random.

2011-11-17T22:00:00.003-07:00

This is how the Holidays are making me feel. Well, the Holidays and Coke Zero, which is, for obvious reasons, zero points on weight watchers. Which is something I'm doing right now because things were getting out of control. And egg nog season had not even begun.
Also, I'm listening to Ella shout "Mom? Mom? Mom? Mom?" from her room and wondering why The Children would never let me sneak away to take a bath by myself but when I want them to come be with me, Ava falls into sleepy fits until I plop her in the crib and Ella locks herself in her room with the Ipad and yells "Mom" 97 times until I go make sure she isn't trapped under the mattress. And she's 3. Shouldn't I have a few more years until she locks herself in her room after dinner? Hopefully by then she won't be following me into the tub. So there is that to look forward to.
Speaking of the Ipad, I swore I would never expose my children to "Barney," and turns out she was yelling for me because she is having trouble finding "The Orange Barney" on Netflix and would like some assistance. I cannot stand the orange Barney. It involves a very offensive dinosaur named Riff with a voice worse than Babybops, if that is possible. And he plays the saxophone. Plus it is bedtime. Ella is not taking this news well.
And yet I keep typing.
Hmmm. Maybe needing to cut back on evening Coke Zero.
And blog some other time.

My Blue Heaven

2011-11-09T16:46:00.004-07:00

I've debated about whether to blog about this for a couple of days but it's had such a profound effect on my brain that I'm going to share it. It's such a little thing but so ridiculously healing to me. I feel very whole.

Two nights ago I had a dream about Charlotte. I have always wanted one, and have occasionally prayed for one, but I've never had a really good one. People have told me they have had dreams seeing her running and playing and I'm like, hello, I'm her mother. Where's my dream? Well it was kind of silly and definitely had those funny nonsense dream aspects, but I want to remember it. It is somewhat religious. Which made it more special.

To start out, I dreamt I was in a run down toy store and couldn't get out. That has nothing to do with anything, but I remember that's what I was doing before the dream really started. Then I was falling in the dark, and I had the sense I was going to die and go to heaven, but that it was only for a few minutes, so I had to hurry. Suddenly I came out of the dark and it was very bright but not at all blinding, I could see perfectly and didn't have to squint. I remember thinking "well this is very heavenly light." And I liked it, which is cool because I hate sunlight.
Yep, I would prefer overcast any day of the week. Anyway, there were mountains around and rivers and clouds at ground level, and lots of people. I was running around calling "Charlotte? Charlotte!?" Then I thought maybe I should look for Jesus, but a voice said "No, just find your daughters." So then I yelled "BOOFUS?" and I saw a little toddler girl and ran up to her but it wasn't Charlotte. I knew I didn't have much time, I knew I was going to wake up. I ran up some stone stairs and there she was, wearing a pink shirt and standing with an adult I never really looked at. She looked about 8 years old. She turned and smiled and had the same little face and hair cut and put out her arms. I ran and hugged and her and squeezed her face in my hands and laughed and she laughed too. We talked for a few minutes but I don't remember what we said, it was quite casual, I think just like "oh I'm so glad I found you, I know I'm going to wake up and was afraid I wouldn't see you" and she said "I'm glad too Mom!" I asked her if she knew where Lily was and she said she was quite busy, but maybe she was over by those trees. I kissed her cheek and headed for the trees, and suddenly I was on a ledge looking out over a valley with yellow trees and lakes and a big sky above, and I heard a voice say "I'm so busy, I can't come, but the day I left earth was the most wonderful day, and I was so glad to get out of that sick little body. I will see you later!" Then....here comes the awesome nonsense dream silliness--a fleet of silver jets flew over with big University of Utah flags flying behind them, and I knew it was a gift from Lily. Pretty awesome. Then a breeze came up, and lots of yellow leaves came flying around me and I could see below Ella and Ava looking up at me (both about 8 years old as well ) and I woke up.

And believe it or not, waking up was almost the best part. I felt so calm and happy and warm and like I didn't have a care in the world. I started to realize I had to get up and go to work and it just seemed ridiculous, like such a meaningless thing to have to do. Well I did get up and went to work, but all day I had this little excited feeling about seeing Charlotte, and almost an anticipatory feeling as well, like she was so close and I would see her again. Which I believe but it has never felt so REAL, so literal. She felt so real.

And since then, and I realize it's only been a couple of days, but since then it's like I have zero sadness when I think of her. ZERO. I even made a point to linger on those memories of her right before she died, when she was so sick and didn't look like herself and was unconscious, and it's like there is no emotional hit. As if it just doesn't matter, because everything is fine now. I thought about my regrets, that we didn't get the g-tube sooner, that I didn't make her wear her hearing aides more, that I didn't work harder on her physical therapy. Nope, doesn't matter. It doesn't matter just like having my heart broken in 6th grade doesn't matter, like that bad hair cut in high school doesn't matter, like the fender bender I got into in college doesn't matter. It happened, I learned from it, but it doesn't matter anymore. It's an incredible feeling.

As for Lily, my little mysterious girl, I still feel sadness when I think of her. I still have regrets and don't want to think too long on certain moments of her life. That's okay. I'm not ready to be at perfect peace with Lily's life. But what an amazing gift, to feel free of any sorrow associated with Charlotte. Her name came up in conversation with a friend this morning and my friend said "Oh she was so amazing!" and I agreed and thought "Oh she is, she's such an amazing girl." And I felt like a proud mom, talking about a daughter away at Harvard or something. That familiar tightening in my chest didn't come, that wistful sorrowful moment after saying her name didn't come, there was nothing but happiness and pride and joy. It is incredible.

Disney

2011-11-06T19:02:00.005-07:00

Pooh and Rex, the chosen souvenirs.

Buzz and Tiana

As you may recall we went to Disneyland a few weeks ago. Here are a few choice pics. It was delightful, as Disneyland always is. The company was perfect, the mid-day naps at our budget motel fantastic, and the Halloween Party was fun but PACKED but we did come home with a massive sack of candy which my mother enjoyed passing out on Halloween. We also got to go in to an annual pass holder party after closing time one night, which was awesome and ended with Ella running bare bummed through Tomorrowland, and how many kids can claim THAT? I don't know how we ended up becoming such Disney people but I guess there is no denying it. Hoping to make one more trip before our passes expire in March.

Once we got home, we enjoyed the rest of the Halloween season, and then I celebrated my 31st birthday on Friday. Fantastic. Yes, time is tripping along faster than I anticipated as a teenager, but that's fine with me. I worked on my birthday but on Thursday I got in a run, got a pedicure, (a real one) took the kids for bowling, got a nap, and had dinner and a movie with my husband. Which is an amazing day. Even my work day birthday included a sushi lunch and ended with pizza and taking Ella to see Puss in Boots (she learned some fiery Latin dancing). To top it off we went to a Hopekids birthday party for Lily on Saturday and did some skating, bouncing, and cake eating, and today my weight watchers (I'm baaaack!) weigh in was only two lbs up, for a week that included Halloween and multiple birthday celebrations. So not too shabby.

2011-11-01T17:23:00.002-06:00

Things I would do with a couple more hours in the day:

Keep up my blog
Bag up all the tiny baby clothes in the house
Clean my refrigerator
Work out daily
Read my Scriptures
Give myself a pedicure
Dust
Do art projects with kids
Learn basic sewing skills, mostly so I could make things from Pinterest
De-clutterfy my house
Do a Festival of Trees test run
Plan and execute wonderful nutritious meals
Go to yoga
Read the piles of magazines building up behind the couch
Catch up on scrapbooking (which stops a month after Charlotte's death)
Try on all the jeans in my drawers and get rid of the ones that are hopeless or circa 1999
Shave

Am I slowing down or are the hours speeding up? As much as I would love to accomplish these things, I'm happy there aren't more kid-related things on there. I feel like I spend a lot of good fun quality time with my kids, which, in the end, is what matters most. To you moms who are somehow able to keep it all together, and do it all, (for example, my mother) I salute you. I may be just hanging on to sanity and hygiene, but maybe with tiny kids that's the most I should aspire to right now.

Happy Birthday Lily

2011-10-23T20:42:00.002-06:00

Last Monday, on the 17th, we celebrated Lily's birthday. We were in Disneyland. It was a good place to be on her birthday. Last year when Lily was born, we weren't even sure we would pursue "heroic measures" to keep her alive. We were hoping we wouldn't have to. Charlotte was born to a room of people who didn't expect her to breath, let alone live, so she had to take the reins and prove she could make it. We hoped Lily would do the same.
She didn't.
Within minutes she was laying in my arms struggling to breath, grunting and turning blue. Her blood sugar was tested and it was very low. The nurses looked at us and we nodded and she was whisked to the NICU. So fast. Was that the right thing to do? Should we have just said goodbye minutes after saying hello? The room was bright and everyone looked terrified. It was not a wonderful day. Later I visited her and held her and it was good and quiet and she was pink and lovely, and then I returned to my room and fell into a drugged fitful itchy sleep. It was hard.
Lily's life was touch and go from the beginning. We kept hoping and praying, we gave her every chance, every opportunity to decide to stay. A long NICU stay, a g-tube, serious talk about heart surgery. But it wasn't meant to be. She was an uncomfortable visitor here, she knew she didn't belong here. I guess we knew it too, even if we fought it. We knew she wouldn't stay for long, but a few years? Why not? I don't know if I made the most of the time she had here. I don't know how I could have done better. I do wish I had held her more, and slept with her more, and hadn't kept waiting for her to get healthier. I cling to memories of those morning coconut oil baths and the quiet days the other girls were out of the house and it was just us. Why didn't I just sit with you more? Why didn't I just stop?
Oh Lily. We will get to know you later. Or perhaps we will know you, all of you, your smile and your quirks and your likes and dislikes, from the moment we meet, and wonder how we ever forgot. But right now all we can do is send you a pink Mickey balloon, sing a birthday song with dear friends and wonder, honestly, why you had to come and go. We won't really understand for a long while yet, but I have faith that it will all make sense eventually. I hope you will know I did my best, all I could do at the time.
Happy Birthday Lily. I miss every part of you and grieve for all I didn't get a chance to know.

From infinity and beyond...

2011-10-19T20:22:00.002-06:00

We're back from D-land, all sugared out and headachey. Having a great Halloween season though! Hope you are too.

Big Kid Stuff

2011-10-10T13:36:00.003-06:00

GUM?!
The long awaited Monkey Party

First Teeth Cleaning

My big kid Ella turns 3 tomorrow. She's been growing up like crazy these past few weeks. She is fully potty trained and loving preschool, (even naming her new birthday doll after one of her teachers, Miss Karen) and yesterday we finally completed the big room switch which I started about a year ago. Finally the girl's clothes are actually in their own rooms. The girls also went to the dentist today, for Ava's first check up and Ella's first real cleaning. She was so brave and good, and it reminded me of her big sister being so brave and good though all she went through. Not that a dental visit even compares, but thankfully it's as close as we've gotten with Ella, as far as invasive procedures go.

I cannot believe Ella is three. It seems like she hasn't been here very long, and yet when Charlotte turned three it felt like she had always, always been with us. Somehow Charlotte managed to fit soooo much life into those three little years and 8 short months. Not that Ella hasn't, but time has definitely sped up since I entered typical kid life. Makes me want to slow down and enjoy the little things more, which becomes increasingly difficult as these kids get crazier and messier and so, so busy. I love it, despite the break neck pace. These kids are going to be teenagers before I know it. When Charlotte died and then Lily died, thinking of the long tedious life ahead was enough to completely overwhelm and depress me. Now this life is overwhelming me with how fast it's flashing by.

Days Like This

2011-09-29T17:04:00.002-06:00

Ava consuming my Halloween Decor

Was almost driven crazy today. Yes, they have been little annoyances. But truly, sometimes it's the little things that drive you to the edge.
It didn't help I suppose that last night, I went back in my blog to look at some pictures of Ava and her hair line, and decide whether I'm giving her traction alopecia. (no.) This brought me back to last December, when her hair was all cutely professionally done (as in done by a friend) for our final court appearance. And then I read about Lily's birthday in October which is fast approaching, and about the NICU, and about hospice, and about her death. I had recently revisited this in my Hospital posts, but only from memory. Going back and seeing is different. Seeing her little feet, her tubes, her puckered lips waiting for chap stick. Seeing her all sweet and warm and still looking so weary. So I cried and cried, and then took Ella up to read before bed, and decided there's no reason I can't have Ella see me cry (it's okay to be sad or mad, after all) and I told Ella I was sad because I missed Lily, and that made me let forth a big ole' sloppy sob, and Ella just nodded and said "Well, she's a good baby."
I agreed and we read a Cinderella book (Ella's choice) and Little Bear, (my choice) and a weird bunny book about a baby bunny who doesn't want to be a doctor or a farmer or a lion tamer, he just wants to be a daddy rabbit with lots of children, to which I say then baby bunny better find a job.
Anyways, then we went to sleep.
Back to today. This is self indulgent but I'm going to go through my small annoyances just to make myself feel justified in being annoyed.
It started my phone claims I hit "dismiss" instead of "snooze" when my alarm went off, which means I missed my early morning all-by-myself read and work out session which I have enjoyed the past few days. When I did wake up I was glaring at my phone and it's alarm and noticed an overdraft notice from my bank, and found that Ella's preschool just barely cashed her tuition check I turned in six weeks ago. And yes, I should have known it hadn't been cashed but as I eluded to, I only started watching my finances like four weeks ago. So...totally annoyed. That of course means a fee. Grrrr and I have been so careful so that just drives me nuts.
Anyway, got up, briefly thought Ella might be well enough to go to school because she didn't weep and cough all night, but she woke up with a giant deep lung type hacking, so she missed it again. (That and the check just clearing....grrrrr, preschool.)
The morning went fine and I did get some exercise in, which doesn't work as well with kids sitting on your back when you try to do plank...or maybe that's better...but here's what happened from there:

Zar came home from work sick just in time to hear Ava slip and bonk her head on the wall after her bath. Much Screaming.

Ava, my child who does NOT like candy, found a cutely displayed jar of candy corn on a shelf, dumped it over her head and wildly stuffed them in her mouth while I tried to clean them up. Was funny until noticed orange drool all over carpet. Did I mention I was on my hands and knees scrubbing out carpet stains YESTERDAY...

Kids threw all my bathroom counter bottles in the slowly draining tub while I was stupidly trying to style my hair for the first time in a couple weeks.

Kids repeatedly slipped on wet bathroom floor (from splashing) and injured themselves while I repeatedly asked them beat it, curling iron in hand.

Kids feel neglected so start randomly screaming to point I am sure cops will be called. Also throw themselves on floor and hit heads again.

Hair looks awful.

Kids throw goldfish around room and grind into carpet while I dress.

Cat barfs on carpet. (carpet now huge mess of cat vomit, orange gold fish crumbs and massive amounts of candy corn drool, at least is festive.)

Ella goes out to garage to get into car while I put Ava's shoes on, and decides instead to crawl under car, where she gets her darling new cream colored dress all covered in black grime and oil.

Zar lays in bed and moans.

Meet sister, mom, and nieces at mall, eat chicken, my kids scream, her kids are angels. People stare.

Stupidly go to Sephora to get orange Halloween nail polish, thinking fun activity for me and kids, baby pedicures. STUPIDLY let Ella carry nail polish, ordering DO NOT DROP THIS which she of course immediately does, and it splatters all over the floor, shelves, and sister. Apologize profusely and stand them dumbly asking Ella to say sorry. Feel like jerk.

Rude construction worker gestures at me for who knows what, and I fight not to swerve into him on way home.

Glance into back seat and don't see Ella in her car seat, nearly have a heart attack, realize I forgot to buckle her in and she has quietly left her seat and is playing on the floor of the car. Feel awful.

If you have gotten this far, you will glad to know I now feel ashamed of my list, as now looks like a normal day and perhaps it was just my mood that was different. Probably due to last night's emotion fest. Anyway, both kids fell asleep on the way home and I carried them upstairs, dumped them in their cribs and got almost two hours to watch Ghost Hunters and work on my book page rosette wreath which I finally finished. And there is beef stew in the crock pot I made for my poor sick husband, who does not seem interested in leaving the bedroom. And Ella has not had an accident in days, including two full nights in big girl undies. And got compliment from black lady at mall on Ava's spiral curls. Sometimes it takes blogging to work out what's really going on. So...I had better just shut up and post.

Feeling Good

2011-09-23T19:42:00.005-06:00

So the internet has been down at our home for the last few weeks, at first just partially so, and then completely, and no one really got around to calling on it until today. Thank goodness that someone was Zar as it took an hour and $40 to fix, which seems ridiculous, but the modem was out of warranty...or similar. But we're back up, with faster speeds, so hooray! Now maybe I will have the patience to upload more picture of my kids at the zoo. Yes.

Aside from the zoo, there are other things I've been up to. Here is a brief update.

Potty Training (warning, mentions potty stuff.): Success! Finally after months of fighting it and acting all squirrely, I told Ella that on Tuesday we are throwing away the diapers, and you are going to pee in the potty. She, shockingly, agreed. We talked about it all week and told all our friends who oohed and ahhed. Then we did it. Woke up, got naked (her), sang a song and dumped the diapers in a (clean) garbage bag. She did so great. We stayed inside and she peed and yes....pooped...in the potty all day long. It was awesome. That was last Tuesday and she is now going to preschool and Target and Costco in big girl pants and doing fabulous. We've had a few accidents obviously, a bad one with her poor sitter, but really it's been awesome. I look forward to doing a better, faster, less prolonged training with Ava. And the checkout girl at Target laughed heartily when Ella informed her that she worked at "The Panny Store."

Organization: I've decided, now not having the stress and emotional struggle of a special needs child, that I can no longer spend money like a drunken sailor. This is something I should have figured out years ago, but honestly, with everything else going on, it was just one thing I couldn't bear to think about. We were covering our medical bills, and I was happy. Even if that meant treating ourselves...okay...myself, and my kids, to little luxuries that perhaps were out of our non-existent budget. So now, having decided to look for ways to save money and pay attention to my I's and O's, turns out I need to come up with other stuff to do other than wander the mall or Target, aka, The Panny Store. This has, actually, been awesome. I have rearranged my kitchen and finally threw away the stale and spilled weight watchers cereal in my cupboard, moved the pots and pans around and used our billions of old medical tubs to organize our pantry. These tubs will be familiar to anyone with kids who frequent the hospital, but we had even more than normal due to the pumping and storing I did for Lily during her NICU stay. See tubs. Couldn't bear to cover her sweet little name on the "Snax" tub. Sigh.

I also, having discovered and explored Pinterest.com (GO NOW) have learned to make laundry detergent from bars of Fels Naptha (smells almost as good as Pine Sol, drove around with a bar in my car for awhile) washing soda and borax. This has been fun and economical, along with my reusable dryer sheets cut from old flannel burp rags and a fabric softener concoction. Too...fun. I feel like a full on pioneer. With an Ipad. And pinterest. In the interest of full disclosure I get a huge kick out of scooping my little teaspoons of powder into my laundry, but I still take no joy from folding it.

More Pinterest Exploration and resulting crafts: I did a lot of pinning before our internet went down, and therefore had lots of ideas for stuff to do while I wasn't shopping and/or waiting for potty success. Here are my copy-cat Halloween decorations I stole, which have been up for...way too long already. Thank you Cricut, dead sticks, and black spray paint. Oh yes, and the dollar store, another recent discovery. Their pasta is mushy but everything else, eye opening.

Thinking About Deadly Epidemics: Yes...we have been hearing about the importance of food storage and disaster preparedness for many years...there have been entire conference weekends pretty much dedicated to it...but it took a movie about a super bat/pig virus to get my butt in gear. I guess I always assumed if there were some sort of earthquake any food I had managed to store would be buried in the basement, or I could still run up to the the Smiths and loot with the rest of them, or focus on getting to Shannon's house were the giant Shelf Reliance system is...but my goodness, what if it were a VIRUS TYPE DISASTER??? (such as in the recent movie release, Contagion)Those people were waiting in emergency food lines like 20 DAYS IN. With masks and guns. I mean C'MON. I'm happy to report I worked a couple of these beauties into the budget, so I can relax a bit, and am now focusing on the more economical beans and wheat type storage. Slowly. Oh, and I made my own tiny pantry organization thing out of an empty muscle milk box. (pinterest). For black beans. Cuz I have like NINE CANS. So...yeah, all is safely gathered in, if you know what I mean.
Feels good to be potty trained (both Ella and I), organized, somewhat in control of my spending, overly decorated, and blogging again.

What we've been up to:

2011-09-13T21:17:00.005-06:00

first and foremost... Staying cool...

hangin' at the zoo...
relaxing up the canyon...

First day of preschool!

BAAAA
Loving the State Fair
Enjoying early Fall to the fullest.

10 years

2011-09-11T22:43:00.001-06:00

Before I was a blogger, I was a journal keeper. Thankfully, quite a dedicated one actually. Tonight I pulled out a big white Deseret book journal with a stick figure dancing to the caption "livin' la Vida loca" and the phrase "Midwives Help People Out" written inside the front cover. This book covers my life from January 1st 2000 to my wedding day, September 27, 2002. Quite a crazy, turbulent, painful and wonderful time in my life. I wanted to see what I had written on
9/11, and was pleased I had the wherewithal to take the time to write something. Although it was just the facts. At the time I had been writing mostly in a grungy yellow notebook with "Erin's House of Pain" etched on the cover. Very unfortunately, this notebook is lost to the ages, because believe it or not, it covers THE most life changing months of my life, the months in which I truly grew up, in all it's raw and painful but necessary details. But that is neither here nor there. The point is, the most personal thing I wrote on 9/11 is that I went to my Institute class,
("You were in COLLEGE??!" my then 8th grade brother squawked tonight when I mentioned this fact) and then left, because it felt inappropriate to go to Latin Dancing which was next on my schedule.
In the weeks surrounding 9/11, I had my heart broken, like really, really broken, went to therapy, wore a ring I wish I still had that said "WHOLE" to remind me I was enough on my own, got into nursing school, turned 21, moved out into my first apartment, and met my husband (and consequently wrote some major cheesy poetry).
I was so self involved that I know for a fact I didn't even cry that day. I remember thinking I should be crying, that would be the appropriate response for a young lady, but it didn't happen. I since have cried when watching old clips, movies and during embarrassing country songs in my car, but at the time it fit so neatly into the theme of my life that it hardly shocked me. I had built up walls to protect myself in the proceeding days and the sounds of terror and sorrow were muffled and far away. It was a time of tragedy out of the blue and loss and growth. It was a time of tears and pulling together and change. Of anger. Of being more careful. Of new priorities. Of innocence lost.
Tonight watching the tribute shows, I couldn't believe ten years have passed. I cried this time, and thought of my family, my kids, and how much differently I would react today than that 20 year old girl who wasn't a bit surprised the world was ending. The gravity, finally, has sunk in.

- Posted using BlogPress from my iPad

Hospitals. The conclusion. Finally.

2011-09-04T23:50:00.001-06:00

We had high hopes when Lily was born. I did, at least. Her heart looked fairly healthy on echo, her skull was pleasingly round on ultrasound, and she was big. And so, having accepted that we were getting a new membership to the special needs club, I was hoping for a chance to be amazing at it. I was counting on Lily to make it easy for me. No big surgeries, no scary unknown, and hope of hopes, no oxygen.
When Lily was whisked to the NICU at age 20 minutes, I felt those plans slipping away. Still, she graduated quickly from the little room at the hospital where she was born and was soon a big fixture in the feeder grower area, sunning under her bili-lights and taking milk by bottle. I thought she would be home soon after I was discharged. Leaving the hospital without her was so sad and felt so wrong that I have blocked it out. But I remember going back when they called in the night to say she had aspirated and would be taking no more milk by mouth. Back in the small NICU room, in the back with the sickest babies, I just wanted her transferred to the big hospital, where they would fix everything. Where they would declare that comparatively she was so healthy-so big! - and we could go home.
Lily transferred. She went to the NICU, and soon I was wondering why I thought this would simplify things. They looked closer. They saw how fragile she was, even comparatively. The NICU doctor talked to me, and said her death was a matter of now, or later. I nodded and thought "Well, isn't yours too?"
When Lily did come home, with a g-tube and oxygen and a terrible diaper rash, I thought we had made it. I thought finally our journey could begin. I could work hard with her on positioning, and tummy time, and physiotherapy, and all those things I should have worked harder on with Charlotte. Yet before I knew it I was calling across the driveway to the approaching therapist that Lily had stopped breathing and we were going to the hospital. And bringing her pulse ox downstairs to keep on her at all times because she was so sensitive to position changes. We kept taking her back to the ER, to the PICU, where she would lay quietly for a few days in one of those cage-like cribs, hooked up to even more tubes than usual and then come back home with no new miracle. I knew she was having seizures and when we finally caught one on EKG during a respiratory related PICU stay, I pulled out ice cream cups to celebrate. Now we could fix her. Now the real journey would start.
The meds seemed to work briefly. We saw the neurologist who mostly just shook his head. I stopped taking her up to the ER and instead made frequent trips to the doctor's office to get her suctioned. It took forever and I had a two year old, a six month old, and Lily with me. But at least we were together. Finally, during one of those doctor visits I mentioned hospice, then burst into tears. It felt like giving up.
But if it was giving up, it was what Lily needed. I stopped worrying so much about the journey and focused on Right Now. I gave her long coconut oil baths and massages. We played music. We let hospice bring us her meds and a suction machine. When her alarms went off in the night and she turned blue, fear would grip my throat and I would start thinking of how much to pack for the hospital. But instead, we would hold her, and pray, and eventually go back to sleep. It wasn't easy, and sometimes it still felt like giving up on her. But it wasn't.
Eventually I stopped hooking her up to her monitor except at night. Suddenly she looked pinker and my stress level dropped. The seizures, however worsened, and each one seemed like it was the end. We had hospice support, and family support, and dinners brought to our door.
I brought Lily to bed with us. I kept a hand on her all night long. I smelled her head constantly and took pictures of her big feet.
One Sunday morning just as we were waking up, it seemed like Lily was ready. Her oxygen went down down down. She was sleeping. We were crying. I began to panic, it seemed scary and wrong to do this without the hospital support. I wanted staff, and curtains pulled, and someone in scrubs with authority to tell us what to do. But the feeling passed, and I tried to be brave, even without a doctor there.
We all sat on the bed, even the babies. We were in pajamas. We were next to the window. It was sunny, and quiet. We sang to her, Consider the Lilies. And Lily, slowly, left one home for another.
Hospitals may be for healing, but when it came time for Lily to be fully healed, we had all we needed at home.
- Posted using BlogPress from my iPad

Welcome Back

2011-08-29T18:36:00.003-06:00

Well, thanks to those who let me know my blog was inaccessible for a couple weeks. After investigation, turns out my custom template was not compatible with some of my widgets. Something about javascript? ???

Anyway, I had to change my template. Kind of sad, as that was my first original, fully custom template, but change is good too.

If you have been gone, welcome back. You haven't missed much, just some long ramblings on my feelings on hospitals, which is what I thought was scaring people away.

If you are checking to see if I've fallen pregnant, or had another child dropped in my lap, I'm sorry to disappoint you. We are hoping for a long, peaceful (and 99% likely permanent) reprieve from that kind of crazy.

Rock Tasting

2011-08-26T17:27:00.003-06:00

First of all, if you've had trouble accessing my blog or others from certain computers, I guess there is an issue with Google Chrome as a search engine for some blog viewing. Internet Explorer and others seem to work fine. You may be able to tell I really don't know what I'm talking about. The kids put together this "Breakfast" while the dads were cooking the real one. Ava tasted a lot of rocks and it looks as though Ella might have one stored away in her cheek as well.

Fish Lake

Had a quick(!) getaway up to Fish Lake to stay overnight with some friends last weekend. I snuck out of work early at 2:00 on Saturday and we left the lake for home 24 hours later. Sheesh! It was still good to to be up out of the city, to stand on the deck and desperately suck in fresh air, and spend time with good friends, eat like crazy, and even to have a few hours in the car with my hubs to read aloud and chat.

I cannot believe this was Ava's first trip to the lake! We were staying at a friend's cabin although Zar's family also has a cabin in the area. It's different now with the kids wildly running around, getting filthy, playing games, screaming and laughing. One of my favorite things used to be to take Charlotte to the lake where the altitude and lack of media made everyone good and snoozy. Many naps were had by all. The nappy days are done for now, I think. Hello to the rock eating days.

Thank you!!

2011-08-24T17:03:00.001-06:00

I am so excited that in just over a week our Deals that Matter fundraiser has hit $100! I had no idea it would be so successful! Even better, for the next three weeks we will continue to get 100% of all proceeds from sales donated to us, and after that it drops to 15%. After September 16th I will probably remove our tree from the cause list as we will likely have plenty of funds for the tree and there are so many great causes on there to choose from.
Thank you all so so much for supporting us through deals that matter and keep watching for great deals over the next few weeks. Hopefully we can turn these little donations into a BIG donation for Primary Children's Medical Center.

- Posted using BlogPress from my iPad

Hospitals. Part 2

2011-08-18T19:44:00.002-06:00

After I left the surgical oncology job at the hospital, I went to a different sort of nursing job. I am not in the hospital every day. In fact I spend most of my time in a donor center, doing paperwork and drawing platelets from donors. There are a few other nurses and we take turns going up to the hospitals and performing therapeutic apheresis. It's not very much like dialysis, but it is. It is used to treat a lot of autoimmune disorders. It is also often used as a last ditch effort. I saw it on "House" a few times, if that gives you any idea. It's not the most common procedure and many of our patients are flown in from out of state. I've been at this job for seven years, and I expect I will be here for the rest of my career, if things stay the same.

At first I missed the hospital setting. I missed going room to room and I missed wound care. (yep.)

Then, after being at my new job for 6 weeks, I found out I was pregnant.

Thank goodness for that job. Thank goodness I left the oncology ward when I did. There isn't any possible way I could have coped with what was to come if I were still trying to work nights and feeling afraid and pressured and on my own all the time. It's just another reason I know God is in the details.

Of course, I was pregnant with Charlotte. A few weeks later I received that phone call at work that changed the world. Things weren't right with my baby.

The hospital, over the next 4 years, became a very different place than I had known. As a nurse, you go to work, you become deeply involved with your patients, you go home. It is, in the end, still just your job. Having a sick child is not that same.

It is 24 hours. It is living in a state of constant stress, senses always at the ready, never dipping more than inches below the surface of sleep. That deep warm blackness below is not for you, because you have a sick child. You can't afford to sink in, even for a moment. Except sometimes, under the constant monitoring and overwhelming exhaustion at the hospital.

The hospital became all places. It was home, it was hope, and it was hell. Our first big staycation there was after I received that dreaded phone call at work, that Charlotte wasn't breathing. She was there almost a week, and they tested her blood, her brain, and after every test I hoped they would find something that could be fixed, hopefully with simple medication. All they found was worsening pulmonary hypertension, and she came home on 24 hour oxygen which she had the rest of her life. When they brought us the tank I cried into my husbands chest. I could not imagine how I would handle a baby on oxygen.

Charlotte spiked a major fever and went back to the hospital soon after. It was a kidney infection, and further studies showed a crazy urinary system. She went on permanent antibiotics. Sometimes I ran into nurses I had gone to school with. It was so bizarre to be on the other side, to be a patient where we had once both been students. She would be in her scrubs, her gloves donned, smiling behind a mask and I would squint at her in the dim light without my contacts in, face dotted with zit cream and wearing rumpled pajamas. Once I became overwhelmed and left to walk the halls in the middle of the night, looking out the window at the end of the hall at the city below, marveling at how different the hospital feels on the other side.

The hospital is frustrating. Everything takes forever. Nothing gets done on the weekends. A doctor will promise to come discuss results and options with you and you will wait all day, afraid to leave the bedside for a plate of nachos, and they will never come. No one understands your child and they label them. You can tell the ones who feel like it's not worth their time to treat your child. Your child who will never become president or discover the cure for cancer. Your child who will always, always be a child.

The hospital is terrifying. I have watched Charlotte's breathing become more and more labored, waiting for hours in the ER, until what might have been stayed with high flow oxygen or perhaps c-pap now requires intubation and a lengthy ICU stay. I have shivered on the floor of the dark PICU waiting room with my husband, having been sent away so they can try and save your daughter's life. I have sat in the surgery waiting room alone, there for a simple hearing test and without my family, to have the doctor enter the room and pull me quietly into the private consult room, to tell my my baby's heart just stopped. I have heard that quiet knock on the sleep room door to summon me to her bedside. The bedside I left hours ago dark and peaceful now flooded with lights and surrounded by people in masks, alarms and lights flashing. I have called my husband, in the middle of the night in a major snowstorm, to tell him he had better hurry because Charlotte is not doing well. It is surreal. It is exhausting.

The hospital is incredible. There my daughter was pulled from the brink of death time and time again. I have heard her tiny raspy cry for the first time in weeks after being extubated and thought it was the most beautiful sound. I have seem my daughter's skull reshaped in a day which brought about bounding leaps in her development. I have attended the most amazing spiritual church services there, I have met the most amazing mothers, nurses, doctors.

The hospital, still, is cozy. Sometimes it is the only place where you can rest. After trying your best to stay at home, to fight the fever and the congestion for long sleepless nights, to finally give up your child to the nurses with the equipment and the monitors and the drugs and to lie down on the most uncomfortable lumpy chair in the universe wrapped in quilts donated by youth groups and just fall into a dreamless sleep...sometimes it is the most deeply you have slept in months. To hear the raspy breathing finally quiet after the respiratory people leave. To finally feel it is safe to rest.

And, yes, sometimes it's okay for a few days to stay in your flannel pants and watch daytime TV in a rocking chair holding your baby, eating donuts you've looted from the hospitality cart. Sometimes, after all the stress, it's okay. You watch your baby sleep and take dozens of pictures. You surround her with toys and balloons and make a trip to buy ridiculously expensive super soft microfiber jammies for her to wear from the baby boutique. They are brown trimmed in pink. You decorate with pictures of your child when she is well, so the nurses know how gorgeous and happy she usually is. Friends bring in a small fake Christmas tree the nurses keep telling you to send home, but you don't. You bring a pile of books and pillows and eat things you would never eat at home. Basketball and hockey players come and wave awkwardly from the hall. You wear slippers. You gain a pound a day. People bring you sushi and smoothies. Friends come for a visit after work. They spend New Year's with you eating cafeteria frozen yogurt. Your baby starts smiling again, and the cultures don't grow anything, and you know everything will be fine. And it's cozy.

The last time we took Charlotte to the hospital we walked into packed emergency room. There were people up and down the halls coughing, kids in footie jammies. Charlotte was hot and limp and still, we almost walked out. It seemed so hopeless in there. But the nurse beckoned us forward, and took us right back, past the waiting masses. We were so grateful. The virus panel came back fast and it was RSV, and I was relieved. It wasn't heart failure. It was something to support her through and it would end.

I was at the hospital, three days later, when I knew we weren't going home this time. From that moment the hospital became the site of all Charlotte's lasts. I was puffy and sore and all cried out. Things slowed down. I had time to take in all the last moments, but even when the doctors were optimistic, hopeful, I knew. I still paid close attention, because I knew these were the last.

Charlotte's life began and ended in a hospital room surrounded by her family, being held, and passed around, and loved. Charlotte's hospital room was never short on love. And that day her room became the gates of heaven. You couldn't quite see them but you could feel it. And the hospital had never been sweeter.

It's Halloween! And Tree Update

2011-08-17T17:42:00.005-06:00

All I think about is Halloween and the Christmas tree. I actually considered decorating for Halloween today while the girls were napping, but decided even for me that's a little ridiculous. So I thought more about the tree. I got some great ideas and responses from my last tree update! I am going to go with a pennant tree top, just got to figure out how to go about that. A couple people had an amazing idea to make a tree skirt with stripes radiating out from the tree like the top of a carousel. Awesome. Too bad I have no sewing skills, but I have friends and family who do. Saving my Jo-Anns coupons for fabric. I also found some cute glass candy ornaments today, multicolored and small like little wrapped hard candies. Thinking about throwing a few of those on there. I need to go down to my basement and do a dry run, put what I have on our K-mart special tree and figure out if I need more horses. Once Christmas stuff comes out I will go get some garlands and a few big shiny balls, oh yeah, and a tree. There were other major ideas like getting a little popcorn or cotton candy machine to auction off with the tree, but we will see if we raise enough money on Dealsthatmatter.com.

So a few friends, knowing how much I love the fair, forwarded me an email for a 2 for 1 fair tickets. I jumped right on that, and was introduced to this amazing website called Dealsthatmatter.com. It's like Groupon and the other great deal sites except they give a portion of their proceeds to charity. And even more amazing, we were able to sign up as a cause to make a little money for the tree! They have State Fair tickets 2 for 1 for a few more days as well as clothing deals, ice cream, and that Pass of All Passes for next year everyone around here seems to know about. For the next 30 days 100% of all the proceeds for deals bought under our cause will go to our tree fund. There are also tons of other great causes, both big and small. So go buy a fair ticket or a frozen yogurt or a weekend getaway and search for Charlotte and Lily under Choose a Cause. Or you can just follow this link. Or the button on my sidebar, for that matter.

As for Halloween, we have finally...well I guess it's still August...but we are settled on Toy Story. Ella ONLY wants to be Buzz, and this has remained stable for months. Luckily we have friends who were Toy Story last year, and their toddler daughter was Buzz, so we will just be borrowing costumes for the most part. Ava will be Jesse which we will have to put together, and Zar will be Woody, and I'm going to be Bo-peep with my awesome costume my mother-in-law made me a couple years ago. See above. It doesn't really look like Bo-peep from the movie but it's so great, and I got called in to work on Halloween that year and didn't really get to wear it. Then I was barely not pregnant so it wasn't going to work last year. I'm PUMPED.

I LOVE this time of year. As in Fall. Although it is still August. LETS GO SEPTEMBER!

Hospitals. Part 1

2011-08-13T00:14:00.001-06:00

I have always liked hospitals. My earliest hospital related memories involved my siblings being born, a snippet or two I even recall from the birth of my first sister when i was 18 months old. Or at least I think I do.
I remember going with my dad to buy flowers for my mom--a plant with tiny purple and yellow buds--and going to visit my mom and my next baby sister when I was 5. I remember the bed went up and down. I remember it was sunny. Mostly I remember my mom was there and she was away for what seemed like so long. She had bundled outfits together for me in my drawer before she left, so my dad wouldn't have to match.
And then when i was seven, I remember waiting with my sister and a nurse in a dimly lit room with a tv in what seemed like the middle of the night. I remember the excitement and anticipation and i loved it, even when my brother appeared in my dads arms all wrinkly and red and unattractive and I thought--"oh, too bad for our family. We will love him anyway."
I knew my dad worked at the hospital and I knew whenever we were here it was because something exciting was happening--my friend was getting a sibling or my sister was getting her tonsils out and that came with Popsicles and a balloon bouquet that almost destroyed me I was so jealous. Sometimes we got to visit my dad and he got to wear blue jammies and make balloons out of latex gloves. The hospital was a mysterious adventure.
In high school a friend said once that she hated hospitals, and she had good reason-- a grandparent dying slowly and the smell of the place. I announced that i loved hospitals....well...because they are fun. And dim and cozy and....(here I tried to be poetic and intelligent)...people go there to heal.
I had no other extensive experience with hospitals until my first day of clinicals in nursing school. I learned a lot. All the patients were so old. And most of them cranky. There were no doctors....where are the doctors!? Ah. They come around once a day, to round, and then they disappear. The hospital I was at was not the cozy carpeted private facility I had known back in the baby days, this was cold and white and yes, had a distinct smell. The rooms were not sunny. No one blew up gloves.
And yet I still loved it. There was so much to learn and so many crazy conditions I hadn't known existed. It was another world and I was going to be a part of it! I got to wear scrubs. I found out what the human body actually looks like, minus the editing. Things that would once shock became every day. There were awesome people, both patients and nurses and although every day was not wonderful, every day was still an adventure.
I especially loved it at night. Things slowed down and it was quiet. Sometimes even cozy again. Our hospital is up on the mountain and at night the whole city stretches out before you, twinkling in the black or blanketed with snow. I would take a deep breath and look out the window when I got over-stressed. Or when I did something stupid in front of a patient. Or when I had a patient who didn't know who I was or what was going on and was scared and upset. Wouldn't take their meds, let me listen to their lungs, wouldn't just go to sleep. Or when someone died.
My first death in nursing school was good. She was very, very old and her whole family was there. The nurses knew it was coming before the family did and I was a little shocked and offended at how casually they discussed it. It wasn't familiar to me yet. It was still mystical and not to be mentioned. She was our patient, mine and my preceptor's. There was a hospice nurse there, a southern black woman who knew the patient well. She was smiling and hugging everyone. A grandson ran out of the room sobbing. When she died I was out in the hall with the hospice nurse. The family let out a collective cry and the nurse announced "Oh well done, Hallelujah!" and rushed in to hand out more hugs. That's how I decided I wanted to be. The family kept crying, holding her hands, but they were smiling. It was warm and dim and cozy.
My first nursing job was short lived, just 5 months. I was there when the hospital opened and a lot of kinks needed to be worked out. Staffing kinks too. Lots of new grads. I cried a lot, I hated 12 hour shifts, I made dumb mistakes. I loved the patients. The views from our new giant rooms were incredible and I worked mostly nights. I was able to sit and talk for an hour once with a woman at night in her room when she was lonely. I cried with a patient whose doctors came in and told him there was nothing left to do while we were discussing a sitcom. I prayed with a woman. I broke down in happy tears when a catheter finally went in and the bladder emptied. In the end it was staffing issues, and exhaustion that made me leave. Our manager thought it made sense to work two nights and a day shift every week. Once she scheduled me for 24 straight hours. Finally she called and told me I had to work the following night, even though I had I requested it off three months prior, had covered a sick call last minute that week and had a friend flying in from out of state to see a concert for her birthday.
When I resigned she tried to convince me to stay and told me I was a good nurse. That my patients loved me. That just gave me more confidence to go.

- Posted using BlogPress from my iPad

I Hate Potty.

2011-08-12T18:12:00.004-06:00

Ella is running around bare bottomed shouting "I want a notebook! I waaaant a NOTEBOOK!" I don't think she's going to get it.

All she has to do to get the notebook is pee. In the big girl pink princess throne music making potty. She has announced recently that she is going to wear diapers FOREVER, rather than have a tricycle, or a Jesse Doll, or look cool in preschool, or be just like her friend Caro. And cousin Hayes. And Mom.

Well I decided to give up, and was grateful I can still drive around and run errands for hours without worrying about being within 10 seconds of a potty at all times. Grandmas are both more willing to do the whole stay at home for a week naked and make her use the pot thing. Ugh. Sounds like something I would rather do in the dead of winter, not in these last precious summer days that are not unbearably hot and perfect for park and zoo going.

By the way, the above is the Potty Basket I put together for her, which includes lots of items from Target's dollar bin. A coloring book, crayons, warm fuzzy pom poms, stickers, blocks, a foam clock (she recently discovered our bathroom clock), Winnie the Pooh bandaids, a plastic microphone, a mini-football, and thrown in at the last second, a tiny notebook, which she has decided is perfect for writing down clues while watching Blues Clues. The notebook is what she wants. Today at grandma's she had success and got a little personal package of kleenex with ducks on them. She was thrilled.

However much she desires the notebook, it doesn't seem enough to overcome her rejection of the potty. She's mad. She wants to go to the picnic. She wants the notebook. She wants the potty to play music. She just really, really doesn't want to pee.

Can't we just wait till December? Seems Ella thinks so.

update: she did not earn the notebook and I need to stock up on carpet cleaner.

Erin's Favorite Things

2011-08-09T15:07:00.004-06:00

Most of my random blog posts are born in my brain when I can't sleep. Last night I was thinking about how I had to take Ava to her doctor's appointment this morning and then had a lot of cleaning to do. Then I thought about that great clean house smell you get after a major day of cleaning, and I felt a little better. And I was grateful for Pine-Sol. And thus, this post was born. A short list of my current can't-live-withouts. The Tangle Teezer or The Knot Genie

This is a brush I originally bought online from England for like 18 bucks before Ava even arrived in our home because I heard on the Adoption hair care boards that it was great for AA hair. Well it is. It is also great on my hair, and on Ella's. It's meant for extra curly hair and gets out knots and snarls quickly and painlessly, but also glides through straight hair and feels like a little scalp massage. (Ella would disagree on painlessly, she is quite dramatic about getting her hair brushed). They are now available locally at stores like Cookie Cutters--they sell the Knot Genie which is very similar but a slightly different shape, I prefer this one because it fits just so in my hand and is easy to grasp as I chase Ella around trying to brush out wet hair. So now I have two, one for upstairs by the bath and one downstairs for doing hair in front of the TV.

which brings me to:Yes, it's expensive. And easy to get sucked into their ridiculous automatic delivery system and hard to get back out. I got lured in by a free one month supply and luckily I loved it, so I wasn't too furious when the giant 3 month supply arrived with a bill 6 weeks later. In case you don't know about Wen and don't frequent the Infomercial channel, this is a hair product, a Cleanser, if you will, and you just use this and no conditioner. You put on a ton of it, massage it like crazy, add a little water, brush it through with a tangle teezer or painful wide tooth comb they provide, let it sit and rinse out and my hair is so much softer and bouncier than it ever was. I'm growing it back out just because of this stuff. I've used nothing but this since the beginning of June and I will never go back. Bad name--when I hear the word Wen I think of a big ole cyst on some dude's face (true, look it up, you would think they would have before naming it) but maybe that's just me. They have a much less expensive brand called Hair One at Sally's which I tried, and it's good, but the Wen is just enough better that I'm sticking with it for now. However the kind they have for curly hair at Sally's with Argan oil is awesome for Ava. It's all I use on her now.
Have you tried these? They are delish. Probably somewhat better for you than a cookie so you can go with that idea as you eat the whole Costco box. Which is why I only have an empty wrapper to take a picture of.

Naps. I have always appreciated naps, but on this day, when we took Ella to a water park and she was a big grump the whole day, I was thrilled when she fell asleep on a damp towel and let me snooze next to her under a tree in the August heat. It was incredible. I woke up all drooly. And Zar got to go on slides to his heart's content.

As promised, Pine-Sol. Yes this is a giant 1.36 gallon bottle. I fell in love with it two years ago as we were arriving at the condo at the beach we have gone to with my family for years and years, and it had just been cleaned with something incredible smelling. Now it still reminds me of the beach and vacations. While I was pregnant with Lily I could not get enough of it, and made a little solution of it in a spray bottle that I used as an air freshener. And occasionally as a body mist. Probably not the best idea but pregnant ladies be crazy. I must include my beloved Vita-mix, bought at the State Fair circa 1999, back when I was working full time, living at home, and a $400 blender seemed like a fine idea. Best investment EVER. Right up there with higher education. Of course I make my spinach smoothies which keep me from living a totally veggie-free lifestyle, and it's also great for pureeing baby food, whipping up instant pudding, sauces, and those pesky tomato soups with big chunks of tomatoes in them that just ruin it. After a whirl in the vita-mix they goes down nice and smooth. Vita-Mix, I love you.

The Ipad. I didn't know I needed one until my dad offered to help pay for one so Ella wouldn't always be demanding to play Monkey Preschool Lunchbox on his. It changes EVERYTHING. The world will never be the same.

I wish Charlotte could have had an Ipad. I picture her in her little red wheelchair and her desk using her fat little fingers to scribble and make bubbles and maybe even point to the pictures she wanted to express...oh man. If you have a special needs child, you must get an Ipad. I'm sure I'm not the first person to think so.

... taking a moment to breath and remind myself that Charlotte certainly doesn't need an Ipad now, and if that's my biggest regret regarding her, (it's not) then we are very lucky. We will get into regrets another day. Or maybe we won't because we are doing quite well at the moment emotionally.

But anyway, why would I waste time with this stupid pointless post? Because of one thing that is waiting for me at the top of the stairs that definitely makes my Least-Favorite Things List. Thanks for indulging me. If you feel like futher distracting me from my household duties,

I will be checking the Ipad (sniff!) for any suggestions you may have for future favorite things lists. For now, back to laundry day.

Fun while it lasted...

2011-08-05T18:01:00.003-06:00

A short, somewhat cautionary tale of my Bridesmaid Eyelash Extensions. Please excuse the ridiculous photos--tiny cell phone pic, massive forehead pic, and No-make-up hide-my-wonky-nose pic. It was quite distressing taking the photos for this post, and believe it or not,

THESE were the least offensive of the bunch.

Before my bro's wedding a couple weeks ago, my sisters and I got eyelash extensions. It was cheap--done by a student who came to us--and it was fun. New and different and glamorous. My sister-in-law-to-be had them and looked all Disney Princess 24 hours a day, even while fainting on the beach after we all passed around a tummy bug on vacation (which may or may not have started with me.) My sisters both looked awesome after our discount appointment. Mine were a little too dramatic, possibly because I'm over the big Three-Oh so they just looked a bit desperate, (or somewhat aging exotic dancer) or because I'm the palest of...well...pretty much anyone, so they looked really, really big. But fun. Perfect for the last big family wedding. Yes it's probably not the best to trust this to a student who is charging like 1/4 the normal price, but really she did a great job gluing the super-lashes on one...at...a...time...and I did a great job falling asleep and snoring myself awake every 2 minutes for an hour and a half. No one got an infection or anything else creepy, so forgive me my less than super-cautious nature when it comes to cosmetic issues...

And this is me now. man my nose looks terrifying up close... You see a couple hangers-on; tough little buggers who did not succumb to my steam and olive oil soak yesterday. Let's be clear--you aren't supposed to take them off. You are supposed to go get "fills" every 3 weeks or so to fill in the ones that have naturally fallen off. That just wasn't in my budget, financially or time-wise, and I became alarmed when it seemed mine were falling off with half a lash still attached, leaving me with sad little lash stubs. Yes you can go get them taken off safely and professionally, but what a waste of a babysitter. So I went with the Google method of oil dissolving them off and this is where I am left. Yes a few may have been accidentally tugged off which resulted in complete loss of lash. Also a no-no.

I looked into going and having them professionally re-done which, as aforementioned, is expensive and time consuming, and then there's the Old Stripper issue....
So I'm just going to stick with my own lashes for the time being. With make up they really are fine, and I don't look too much like Creepy Robin Hood like I do in picture 2 above. In a few weeks they will have grown back in, and will always seem wimpy and sad compared to the Sleeping Beauty lashes I briefly enjoyed.

That is...unless I try that stuff Brooke Shields sells.

Funny how I never gave my lashes an iota of thought until two weeks ago. Weird things creep in when you aren't worrying about life or death, turns out.

But, you know, live and learn.

Charlotte and Lily's Tree Update

2011-08-02T15:42:00.004-06:00

Well as far as I'm concerned Fall is fast approaching, which is fabulous as it's the best time of the year. Football, the State Fair, Halloween, sweaters, boots, Cornbelly's, pumpkin patches...it's the ultimate.
It also means that suddenly I have to buckle down on Charlotte and Lily's tree for the Festival of Trees. This is the big main fundraiser for our local children's hospital, Primary Children's
Medical Center, where my girls received much of their care. We decorate and donate an artificial tree in honor of my girls which will then be auctioned off, the proceeds to benefit the hospital. We did a butterfly tree in 2009 for Charlotte which sold for over $3000, which was amazing, and also most likely beginner's luck.
You may remember we are doing a carousel theme this year to fit with the awesome carousel horse we were given by some friends and neighbors shortly after Lily's funeral. See below if you have forgotten her to see how she currently looks, quietly awaiting her days of glory in my basement. I have also received some donations via our paypal button for which we are very grateful, as well as a couple gift cards which I am saving for last minute items. I hit up my parents last week and asked if they would like to buy the pre-lit tree itself again this year, and they accepted my offer to be a vital part of our project.
I just wanted to show you what we have so far and get any input.

I'm not sure what to do with these little guys. They are quite cute really, and originally I thought I could just spray paint them all gold or silver. I'm not incredibly artistic but they could be so, so gorgeous, you know? Anyone have any bright ideas? These could look great or very cheesy. These I found on sale and bought 25 of them. (update--went back to Sundancecatalog.com, they were down to clearance, so bought more, now have 50.) I wanted something to represent the mirrors and jewels you often see on carousels. I'm fairly pleased with them, but might change out the ribbons.

These are the carousel ornaments, most of them from Hallmarks collection. I also came across a few other non-Hallmark items which I snatched up. We probably have about 12 of these. I realize I will be needing more. I have been buying them online. A few of the animals are considered collectors items and are way expensive, (the giraffe for $200) so I am not going after those. My favorite is the tiger anyway. He's like $9.
I'm not sure if we will use these. I have a couple boxes of them I originally bought for Charlotte's "Princess Pea" tree (one of her nicknames) which then I didn't do because I had two newborns, one being Lily, who was in the hospital at the time. I still may do the Princess Pea tree in couple of years so am not sure if I will save these or not. Guess it depends on what else I find. The big carousel horse has a lot of pink and green which would make these ornaments perfect, but the small carousel animals have more jewel tones, which I am thinking I would rather focus on for this one. Green and Blue and Gold and Silver. Red or purple accents. Thoughts?

And here is the star of the show. Isn't she lovely?

I still need to get balls, a tree skirt, garland, and other fanciness which I will be on the look out for over the next several weeks. I am unsure of what to do about the tree topper--I was thinking maybe a flag like you might see on top of a carousel, but that might be silly. Ideas?
We have been assigned spot F-1 which is a corner lot. Which is good but also bad as it means we have a lot of room to fill.
Thank you to everyone who has donated to our tree! I have been so touched! Doing the tree in 2009 was so healing and a wonderful way to celebrate Charlotte and the wonderful Christmas Season. Decorating day is at the end of November and the festival runs the first few days in December. If you are local and have never been you should really go. There are so many awesome trees to check out. It's the kick off to my Christmas season, (if you don't count the day after Halloween, which is my official kick off day. Heh heh. I just can't get enough.)
I would love to hear any ideas or inspiration you have!
Thanks for checking in!

Fear

2011-07-31T19:57:00.003-06:00

Ella has developed her first fears in the past few weeks. She is afraid of fireworks, which made pretty much the entire month of July a nightly struggle. I realize it's a bad habit to let her fall asleep in my bed every night but man, I love the snuggles. And when I try to put her in her own bed and a few popping fireworks go off and she starts screaming, well, I say we will try again tomorrow. We discussed how fireworks are noisy and loud but they are pretty and mean that we are happy. Even as she recites these facts she runs into the house bawling.

The other fear is Ghosts. I'm not sure where she got this one or what her reference is, but apparently she made dad turn off a Halloween episode of Blue's Clues--the newest favorite--because it had ghosts in it. I can't imagine it was in any way scary. In fact had she stuck it out it probably would have resolved her whole ghost fear issue.

My big fear I remember as a child was....get ready....Elevators.

I dreamed about elevators constantly. I remember many of these dreams very vividly. It wasn't that I thought they would break and go crashing to the ground. It was that I thought they would get stuck, and I would be left in there forever. I remember begging to take the stairs at the mall with my mom. I remember feeling so brave and proud when I was able to take the elevator down into the Hoover dam on a family trip. I remember what finally helped me cope was a dream I had in which I was riding in an elevator which was essentially a hotel room, complete with bed, stocked kitchen, bathroom, and tv, so if it got stuck at least I would be left alone forever in comfort.

I have been through various other fear phases in my life; the basement at our house, clowns, spiders, kids that would sleep walk while I babysat them, but Elevators was the one I really struggled with. Of course now it's seems so silly and easy to dismiss, but I'm trying to remember those dreams and feelings when I get annoyed that I'm spending a summer holiday on the couch with a crying toddler.

As an old teenager/young adult, my fears matured to include never finding a husband, being cheated on by husband, not being able to get pregnant, and then, of course, having Charlotte pass away while I was at work or otherwise away from her. None of those came to pass, for which I am very grateful. Of course, now my biggest fear is losing another child. Even having done it twice, and knowing it can be survived, I can't imagine I would be able to go on if something terrible happened to one of my girls. Just typing those words is making me feel sick, as I'm sure it does for all parents.

Oh Ella, how I wish I could let you keep your fear of fireworks and ghosts. I wish you would never have to know grown up fears. But then, you would never get to grow up.

Some Thoughts on Names

2011-07-24T20:43:00.003-06:00

Buzz Lightyear

....or what was going through my head last night while I was trying to fall asleep.

We named Ella Eleanor because there are so many options nickname -wise. And then we went with Ella. Sometimes I wish we had gone with Nora. I think Grandma E would have liked Nell.

Although right now she insists her name is Jesse or Buzz Lightyear, so I guess it's a non-issue.

I would have loved so many nickname options with my name, having gone by my middle name, Sinclair, for a year when I was in 2nd grade. I was too shy to ask my 3rd grade teacher, at a different school with different kids, to call me Sinclair, so I went back to Erin, which was probably good. Although it was fun to have old school mates come up and call me Sinclair in front of new friends for the next couple years.

I didn't like my name when I was 12 because the old ladies at the nursing homes we visited for mutual would always yell "That's a boy's name!!" So sometimes I would tell them my name was Karen.

Kind of like how my dad would tell restaurant hostesses our last name was "Parsons" convinced they couldn't pronounce our not-all-that-difficult last name.

I was convinced in high school that if my name were Lydia, I would be beautiful, and if my name were Sam I would be confident and athletic. And my struggles with my weight were due only to my short, non-exactly feminine name. Which is funny because then, what about Sam?

I wrote a poem as a teenager about my future daughter, and I titled it "Danielle". A year later I renamed it "Lucy". Then "Audrey", And later, "Carmen". Now we have a cat named Carmen, and four daughters, none of whom are named Danielle, Lucy, or Audrey.

I think the most beautiful name in the world is Charlotte. Charlotte's middle name is Grace, and Ava's middle name is Mahalet, which was given by her beautiful birth mom. She said it means "Grace". Ava means "like a bird."

Nowadays I like my name.

Lily's name was perfect for her. The last line of her obituary, which I read the other day for the first time since I wrote it, was "May you bloom ever brighter until we meet again." The lily bulbs we were sent after she died started blooming this week.

It's probably good I only have daughters; the only boy names I like are Jake and Kyle. My brother and my dad. And Reza. Which would just be strange. And John. And no son of Zar is going to be named John. Reza makes more sense.

I don't even think of my husband's name as different anymore, although the night I met him he pulled out his license to prove he was telling the truth.

My sister went through a phase where she daily changed her name to a different flower name--Rose, Violet, Lilac. She suggested Sunset as a good name for our new baby sister. I suggested Diane, which was immediately shot down as apparently my dad had dated a girl by that name. Which was traumatic for a kindergartner to hear. We were at Wendy's. I had never considered that my parents had once not been my parents.

I love the name Wendy.

mmmm.

A Frosty sounds good.

CONGRATULATIONS

2011-07-22T19:02:00.002-06:00

Mr and Mrs

They do Look sweet...

My brother got married yesterday. He is the youngest of four kids, and the only boy, and he married lovely R who is the youngest of four kids, and the only girl. They have lots of experience living with member of the opposite sex, but I think he is used to a lot more drama than she is. The dynamics should be fun!

We Love her. You would think someone so beautiful would be somewhat obnoxious, but she's not. She's perfect for our family and she is perfect for him.

My girls were not so perfect for the wedding. Ava was thrilled with all the attention and snuggles but would not hold still for an instant for a picture. Ella is a bit overtired after a month of vacations and being babysat away from home, and spending very little time camped out watching Minnie as she prefers. And so, even when bribed with M&Ms to smile nicely in photos, and wear her flower crown ("Just like Tangled!!") and stop crying please, she resisted. In fact, she announced "I don't want emmamems, I just be BAD!"

hmmm.

My parents have successfully raised four (awesome) kids into fairly stable and somewhat contributing members of society. What a relief.

Having just begun, I can say it looks like quite a long road ahead.

Oh Some must push and some must pull...

2011-07-18T17:26:00.005-06:00

ah beautiful prairie with it's outhouses under the big pink sky...

best to only look at this picture from a distance...

When I was a delightful teenager our area held a Pioneer Trek...and I refused to go. Obviously. I was a cranky high school girl, and it was the appropriate thing to do. Unfortunately I really did want to go, and of course I expected my mother to force me into it. Well the days went by and she didn't bring it up, and then my sisters left for the trek, and I stayed home. I've been bummed about it ever since. This week I finally got my chance to go.

Pioneer Trek, for those who may not know, is a Mormon phenomenon where the teenagers dress up like pioneer ancestors and go push a hand cart across the prairie somewhere for a few days. Some treks are really hard core, with very little food involved and rules such as No deodorant and no chap stick and many, many miles. My first trek was not this type. We went 14 miles total in 3 days. We had all sorts of modern conveniences and enough hot, good food to last actual pioneers a few months.

When I got back to work with my sun burnt puffy lips and red peeling nose, a coworker asked where I had been, and when I told him he shook his head and said "Ah you Mormons. I'm Scandinavian and you don't see me out on a Viking Ship."

But really...wouldn't you WANT to go out on a Viking Ship? Thought so.

It was hard work. I was one of the medical staff going, and we were BUSY. Most of the issues were just your typical teenage drama--I stayed up all night playing truth or dare and eating candy and now I don't want to go walk in the hot sun all day...that kind of thing. But not all of it. We had some real medical stuff, and it's kinda spooky to be out there.

Of course, not nearly so spooky than it was for the actual pioneers. We were in the area of Martin's Cove, in Wyoming, where a large group of late season handcart pioneers were stuck in an early snow storm in November camped for 5 nights in a cove of rock somewhat out of the wind. About 20% of them died and buried out there. Plenty of them lost hands and feet and had them amputated out there in on the trail. They were all starving. And after the storm died down, they still had hundreds of miles to go. I had heard many of the stories before but it's something else to actually be there and hear the stories. Kind of made me think if they could travel from Europe across an ocean and country and starve and freeze and die for their faith...maybe I can teach primary once a week. Not only that, Charlotte and Lily as well as Ella and Ava were never far from my mind. In a much smaller way than they did, I've watched my children suffer, and I've watched two die in their father's arms. It sounds ridiculous but in that way I feel a kinship with the mothers who had to do the same, but then had to leave them out there and keep walking.

It was awesome. And yes, my nose is bright red and I'm covered in bug bites and scrapes and my brother is getting married in three days, but I'm so glad I finally got to go. Thank goodness for large helpings of spirituality. It helps me to keep walking.

sorry...

2011-07-11T23:21:00.002-06:00

So proud...
up on my feet again!

frightening foreshadow for teen years?

Yeah, bad form to complain about a beach vacation. I sincerely apologize. Had a bad day. And the barfs. And Ava is getting molars.

In brief update--

Ava is ALSO now a full-fledged walker, and it is awful cute.

Ella loves the ocean and I've pretty much given up potty training for now. (unrelated.)

In the middle of a crazy month--vacay, pioneer trek (my first!) Jake's wedding and related 35 bridal showers, and Harry Potter, so you know. Blogging is falling by the wayside.

Also in the middle of low-carb pre-wedding detox from major donut binge in CA. Uploading photos tonight also forced me to observe my somewhat distressing "Before Photos." (man I've taken a lot of Before Photos....)

Plus I've just been too busy to focus on grief, the working through thereof, or Lily's headstone, so that's making me feel guilty and I don't really want to go there right now.

Thanks for standing by.

(dear husband, I don't want to hear how much this entry stinks. Start your own blog. --Your loving wife)

Vacay

2011-07-07T23:12:00.001-06:00

Vacation with babies is...less than relaxing. Doesn't help that we are all passing around a stomach virus. Looking forward to clean clothes, not sleeping in the same room as my kids and eating something other than cheese and cap'n crunch. Oh and sheets that aren't perpetually damp. It's been fun and good to be with fam but I'm ready to come home. Going to try hard to get a few pics of my beach babies tomorrow, provided I can muster the energy to get them all ready and out on the sand. Ella seems intent on getting herself swept out to sea...so back to that "less than relaxing" issue I mentioned. Seems easier to stay cooped up watching The OC on DVD and unwrapping popsicle after Popsicle. Happy the kids are so worn out from fit throwing I have a moment to sit...and just sit.

- Posted using BlogPress from my iPad

Happy 6th Birthday Booferd

2011-06-30T02:00:00.001-06:00

Our first born, Booferd de doo, aka Charlotte Grace, would have been six years old today. We celebrated three birthdays with our special girl, and now, three without. (not counting her Birth Day, that is.) Luckily the sour mood I have been in for a couple weeks has lifted, as well it should! Boof's birth day was the brightest happiest day of my life, and not a day to be looked back on with any semblance of sadness. It was incredible. After she was born I had no pain despite having been in labor all day and then having a c-section. I was on an incredible high and it wasn't from the drugs. The memories are sharp and clear and I felt like I could have run a marathon. I have not had the same experience with my other kids births. (Not even Ava's...that day was exhausting.) Charlotte's whole life was like having a window to heaven in our home.
For the past four years we have celebrated Boof's birthday with a little backyard BBQ at a dear friend's home. This year we decided to celebrate Lily's at the same time, due partially to the fact her birthday is less than a week after Ella's and also because a warm bright summer BBQ seems the perfect way to celebrate such sweet little lives.
It has been no secret that Lily's Birth day and entire life was much more touch and go and difficult than Charlotte's was. It was hard. Charlotte's was hard too but there was enough joy and incredible highs to soften the worst moments. Lily was a little too close to heaven to stay firmly on this earth. Every other moment she was being pulled away. I thought about that fact when we released pink and white balloons into the warm June evening last weekend. What a fitting tribute for a little girl who wasn't meant to be grounded here for long.
We love you little girls. One more June closer to being with you both again.

Enjoy Life!

2011-06-28T17:12:00.001-06:00

This guy sure does.

MAD SKILLS

2011-06-26T15:35:00.004-06:00

Check out my mad hair skills. This is my first veil style attempt. Yeah mom, you got mad skills! (please ignore Ella consuming her somewhat-good-at-church-reward-sucker instead of her healthy balanced lunch) I am enjoying recording my hair learnings as we go, as I learn to part somewhat and twist and braid and one day cornrow, so I can look back and see where I've been and how much I have grown.
Because--(and here comes my weekly thoughtful post)--continuing to grow is what life is all about. I've been down this week for various reasons, some of which I've documented in prior posts. Today after struggling through the first hour of church with my wild, loud, poopy girls (yes, Ella announced during the meeting "I'm pooping! I did it! Change my diaper!") I got a chance to sit with my husband during the second hour and feel sorry for myself and pick at my nails and make deep sighing sounds. Then during the final hour, I sat alone, and realized that I'm being a boob, and I'm not the only one who has suffered, I'm not the only one asked to do things I would rather not do, and hanging out stagnating like I would like to do probably isn't the best thing for me or my continuing maturity aka eternal progression.
So yes, I would prefer to just lay around and rest and take a year or two off to be a mom of two tiny wild poopy girls, and apparently Ella would like to continue to use a diaper for the foreseeable future. Just this morning when I presented her with her potty she screamed "NOT YET MOMMY!" and ran upstairs sobbing for a pull-up. Which is just what I've been tempted to do. (well, sort of.) So here's to developing mad skills, whether they be hair related, potty related, or actually practicing what I preach.

Summer Grubbin'

2011-06-22T18:14:00.002-06:00

Remember that sleepy itchy grubby dusty sore feeling you had at the end of a good long summer day? Well these kids know it well. Here's to summer grubbin!

Welcome to Italy

2011-06-21T16:09:00.007-06:00

I'm feeling a bit fragile this week, what with Charlotte's birthday coming up. It's making me act like a jerk. Not wanting to see a friend's new baby because he will be small and cute and soft like Lily was last I saw her. Not checking blogs of close friends from our special needs world because I feel left out or something similar. Feeling resentful that old therapists and nurses and docs from our past don't just call up to say "Hey" and exclaim what incredible kids were Boof and Lily. Like everyone is moving along without us. Ridiculous, I know. Here I suddenly find myself in Glamorous Italy and I'm really missing Holland. Special Needs is a family, and it's a good one. It's close and strong and there to hold one another up. Once you are in, you are never out, even after they come to pick up the oxygen concentrator. My feeling left out is all my doing. Truth is, I just don't like the grieving. The sudden kicked in the gut feeling. The quiet. The look Non-Special Needs Family people get when they find out I've buried half my children. And the fact that I tell my story so matter-of-factly, because it's just my reality. Lot's of people's worst nightmare, my every day.
I miss my snuggly girls. Charlotte was a supreme cuddler. When I woke up terrified in the night thinking I hadn't turned on her oximeter alarm, I could go in and lay with her and hold her little chubby hands and bury my face her in thick coarse hair, smell her sweaty head. Lily slept between us the last few nights of her life, which was difficult with the feeding tube and pump and oxygen, but so worth it. I could lay my hand on chest or squeeze her foot. Hear her breath.
Lately after I finish reading to Ella at night, she immediately announces "I want to sleep in mommy's bed." Zar tends to not come to bed until very, very late, or very early, depending on how you look at it, so I let her. I love having her there, listening to her suck her thumb and sigh, being woken up suddenly by a grubby foot to the nose, but she will not have the snuggles. "NO!" She squawks. "MY PILLOW! NOT YOURS!"
After she falls asleep, sometimes I can lay my finger in her tiny curled hand, fingernails pink and chipped and slightly sticky. Usually she lets it be. Then I sigh and think on the difference between my girls. Two gave their whole selves to me to care and cuddle for, and the two who, already, are running away from me at the park, climbing out of their high chairs and only accepting hugs when they have scraped knees or bonked heads. Or are asleep.
There is a sweetness and sacredness to the absolute dependency I once knew. I miss it.

Daddy's Girls

2011-06-21T15:27:00.003-06:00

Happy Belated Father's Day to my dear husband, Daddy to Princesses and Queens. We Love You.

Six Years Ago

2011-06-14T15:18:00.002-06:00

Six years ago I was in my last days of waiting for Charlotte. One day I came home from work, sat down on the mattress that was our bed at the time, and self shot this picture of my pretty little 24 year old first pregnancy belly. (Don't worry, my lower hand is strategically covering the stretch marks.)
I was feeling serene (at least that day) because I thought this journey was almost over. Within a couple weeks I expected to be induced, deliver, and hopefully, hope upon hope, spend a few precious moments holding my first born daughter before she died. At that point we prayed daily that she would be born alive. That she would breath. We didn't dare think she might breath and live and for the next 3 years and 8 months. And we were terrified of what might happen if she did.
So in this picture, I'm thinking in just a few weeks, after I go through the hardest days of my life, I will be free to lay in bed and heal and cry and read. I will spend a week in Hawaii with my family to just be away. To reflect. I will come home and go back to work. I will never really know this poor little baby inside me, this flawed and yet perfect little spirit we would name Charlotte.
I didn't know the brightest, sweetest day of my life was just around the corner. And that the journey was just beginning.

Some long winded ramblings

2011-06-09T15:46:00.005-06:00

When I was in high school I was a big fan of Deana Carter--a country singer I haven't heard tell of in years but who became popularized by her song--"Did I Shave My Legs for This?" I loved that song--even wrote my own version "Did I Waste Five Good Months For This?"about my first real romance which only lasted...you guessed it...Five Months, but in retrospect seemed like it dragged on for years.
Anyways, Deana's whole album was fantastic, especially "Strawberry Wine" (come to think of it maybe that one was her mainstreamer) and "We Danced Anyway." My best bud Bink and I went to her concert when she came, out in a dusty field in Murray on folding chairs. It was AWESOME. She played barefoot and we were in the front row or nearly front row. When she sang "Strawberry Wine" she had a line that went "Well I still remember, when 30 was old--" and I remember Bink snorting and saying "It is!" And at the time I thought "well how ridiculous, of course 30 is old. I'm 16 (or 17, somewhere in there) and I'm getting old myself!" Well I'm here to tell you something. 30 is old.
That may not mean much coming from a 30 year old who thought she was over the hill at 17, but I gotta tell ya...I'm old. Already I hear words on the television and I don't know what they mean, and I'm older than the Bachelorette and most of the Bachelors too, and every day I find myself more and more drawn to twangy country music. I make no apologies for my love of country music, but I used to at least preface my love with "But only MODERN, you know, not-twangy stuff." Nope. Love me some twang. And the stuff that was MODERN in 1995.
I got to thinking about all this today when I was convinced by my hair girl (31) and my friend Katie (30) that it was okay for me to have one of those feathers in my hair like I've seen on little 12 year olds lately who turn out to be 18. And I then I spent the rest of the afternoon keeping my head turned just so, so no one would notice it.
The other day my dad said something about it being difficult to just stop and appreciate the place you are in NOW, and not wish for yesteryear or dream about when the kids are a little older and you can take them to a movie, or better yet, LEAVE them and go to a movie, etc. I think I am appreciating where I am now, but it's only because of where I've been. I loved elementary school. I loved high school (mostly.) Man college was FUN and I didn't even know it. Being a newlywed with a full time job and all the time in the world to go to the gym and take weekend trips was awesome. And life with Charlotte was so RICH and precious and short. I knew it was going to be short. I knew one day I would be starting again at motherhood with kids who didn't go to the doctor every week and could crawl and walk and throw things in the toilet. When Ella came I knew those days were beginning and I was apprehensive. Then in a whirlwind, Charlotte was gone, Ava was here and I was expecting Lily. I really didn't know what would happen with Lily. I thought she might stay for a long time, and I really did hope she would. Because the stress level is so much lower with non-medically fragile kids, but I was so GOOD at special needs parenting. I felt like I was doing a great job with Charlotte, and I giving her all I could, and making her life as best it could be, and I knew she was happy. I wanted that again. Parenting Ella and Ava is absolutely delightful. They are so fun and smart and hilarious. But Ella runs away from me in Costco and smacks her sister and refuses to potty train, and I don't know what I'm doing. No one tells me I'm so strong or so brave when I'm counting to three as Ella streaks away from me in a parking lot with her pants falling down. And I see a black woman in a store and my heart just aches if she doesn't smile at Ava and I. I duck my head if Ava's hair isn't freshly done. I don't know what to say or do when a family glares at mine at a restaurant in Vegas, because, presumably, we are all painfully, shockingly white and Ava is black and should be heir to a rich, strong culture that I can't give her.
Charlotte left. Lily left. Without some major interventions from above (and don't get me wrong, there have been many of those) I will never be a special needs parent again. I'm a bumbling, old, white mom who can't control her toddler, corn row her baby's hair or respond like an appropriate mama bear when I should.
I will learn.
Someday I will look back and wish for my tiny tots who squawk and push and refuse to get dressed and roll away and pee before I can a diaper on. Someday I will whine at my kids and beg for a hug and a snuggle when all they want to do now is drool on me and fight for a spot on my lap. And someday I will smile at that 30 year old who was afraid, and old, and tired, and yes, very, very happy, but not yet grown up enough not to put a feather in her hair.

2011-05-31T16:44:00.003-06:00

Once I took Charlotte and newborn Ella to Harmons to do the grocery shopping. It was drizzly when we left, but I needed to get out of the house. By the time we got there it was a downpour. I decided to sit in the parking lot until it let up a bit, as carrying Ella, Charlotte, a tank of oxygen, and a purse into the store in a downpour didn't' seem like the best idea. Plus I had just had a c-section. I think this was my first trip out of the house with both kids after getting out of the hospital.
Anyway. It rained and it rained and Charlotte just sat back there clicking her tongue and looking out the window, and Ella snoozed. Pretty soon I decided we had better get going. I had left the house in a desperate rush and hadn't nursed Ella before leaving, and I didn't have an unending supply of oxygen either. And I was thinking I could use a painkiller somewhat soon. (C-section, remember.) The carts around us were soaking wet so I didn't want to just dump the kids in there and make a run for it. In hindsight that would've been a better idea. So finally I hobbled out of the car, put on a sling, pulled Ella out of the car seat, stuffed her into the sling, unbuckled Charlotte and slung her over my shoulder, grabbed her tank and my purse, and made a run for it.
We made it inside. I found a cart and tried to put Charlotte in the front but the little seat was this ridiculous spring loaded contraption and I didn't have a free hand to hold it down and put her in. It kept popping up and blocking the leg holes in the cart. Charlotte was screaming over being slightly wet and the bumpy ride in. I couldn't get the oxygen off my shoulder without putting her down first, and I was worried about knocking Ella's head with the tank. I started to get frantic. I'm sure I looked like a crazy woman. Finally a store clerk came running over and helped me get Charlotte in the seat and the tank off my back. Then he saw the sling and the newborn and said "OH my goodness another one!" He proceeded to walk me about the store explaining that a woman in my situation who clearly doesn't have it together qualified for disability services and I could just have a seat and he would take my list and fill my cart for me. I said I was very grateful but I declined. Well I got my spaghetti sauce and whatever else I needed and relented when the cashier insisted I really did need to the use the drive up service. I made it home, changed Charlotte's oxygen, nursed Ella, took a pain pill and boiled up some spaghetti.
I found myself thinking about that day earlier today when I convinced myself it was just TOO MUCH TROUBLE to get my girls into a store on a nice sunny day and get some groceries. My, how times do change.

2011-05-31T16:31:00.003-06:00

Am sick. As long as I sit still, I am okay. Hence, blogging. If I am sick, that surely means Ella of the weak stomach will be so shortly. Waiting to hear that familiar call from her room--"MOM I NEED A HUG!!! NEED A HUG!!!! URP! I THROWED UP!" Am blaming kids meal from Sonic on the way home from the zoo today. Somewhat dizzy. Perhaps this is not such a great idea.
I worked Memorial Day this year. I think next year I will take it off again. It's quite good for the soul to spend time at my girl's grave site and visit with the families who come and leave flowers for the children all around us--Ava (another one), Lily (Another one), Jonas, Adam. We went up after work, but it wasn't the same. And we missed everyone. Plus work was a BEAST.
Okay, going to go lie down.

Weekend in Arches

2011-05-29T20:40:00.003-06:00

Missed camping these last few years. Looking forward to forcing my husband to go many times in the future. Although he loved the couscous and salmon tinfoil dinner, and I'm sure he loved carrying Ella on his shoulders up to Delicate Arch. Ella did quite well sleeping in the tent "in the desert" and hiking with BFF Caro. A few tot melt downs but what can you do? Ava stayed in SLC with Aunt Snap and lived the good life, dressing up and going to wedding showers and showing off at church. Can't wait to go again.

Carry Each Other and Do it Again

2011-05-25T08:49:00.003-06:00

My back, feet and head hurt, my throat is sore, and I seem to be irreparably dehydrated. But U2 was so AWESOME. We had no idea we would be able to walk right up the stage. I didn't take my camera because who wants to carry around a camera for a couple way far away blurry shots of the stage? Luckily we were right up front and I had my crappy little cell phone camera.
Incredible. Quite uplifting.
One Love, One Blood
One Life, you get to to what you should
One Life with each other
Sisters, Brothers
One Life but we're not the same
We get to carry each other, carry each other.

Oh Lily.

2011-05-19T17:36:00.005-06:00

Funny how when you have tons to do around the house it's so easy to get caught up in looking at Lily's pictures. I just want to hold her for five minutes and kiss her fluffy hair. Oh Lily.

2011-05-17T15:37:00.003-06:00

Zar and I spoke in our Stake Conference at church last Sunday. Our topic was "How our kindness to each other allows heaven's blessings to flow unrestrained" or similar. When a member of the Stake Presidency came over asking to speak with us, I was terrified they were calling Zar to some big-time calling, and that would be the end of my church going. Controlling my children in church has been a bit of a challenge. It's hard to accept that I'm the mom with the wild kids. I don't know if it's because my first child had a different set of behaviors and issues to handle, or if my kids are just especially nuts, or if I'm just too laid back for my own good when it comes to discipline. I kind of have this perspective like "Eh, dance in the aisle during the song. Whatevs. At least we are here." I look at these families with five kids who arrive on time and groomed and sit calmly for an hour, and I'm totally amazed. I observe and try their tactics--coloring books. Baggies of cheerios. Quiet books. A stern look. But I always have the wrong crayons, or Ella wants goldfish and not cheerios, and I've lost the favorite finger puppet in the quiet book, and the stern looks are just met with a giggle and Ella taking off down the hall and Ava crawling five pews back before I notice she's gone. I'm sure it's amusing for those around us. I'm going to just cling to that. We are so charming.
Anyways, when they didn't call Zar to be a Stake Big Shot, and only asked us to speak for 12 minutes, I was so relieved I didn't worry about it at all until a few days before the meeting. Talking about all the kindnesses done to us during our "difficult times" would be easy-peasy. Lots of dinners, letters, babysitting, random acts of kindness, etc etc etc to mention. My biggest worry was leaving someone out of my mentions. Well then over dinner with my family, it came to light that Zar understood the topic to be "OUR kindness to EACH OTHER" and not "The general populations kindness to one another." I made him call the Stake Pres for clarification. Turns out Zar was right. I lamented to my mom "But we aren't that kind to each other!" My mom suggested I go ahead and say that in my talk.
So after more discussion with my hubs, and others, turns out we are kind to each other, especially when things are very rough. Less so when things are hunky dory and I want some bulbs planted and he wants to watch something on the Food Network.
So we wrote our talk together, more or less, and we gave it together. Ah yes, we were also asked to speak TOGETHER which sounded super awkward to me, but then it was nice having Zar standing there and throwing in the scripture references and such that I hadn't focused on in my talk writing. Anyway, it went fine. Better than I expected it to, and it felt super good to sit down when it was done. Phew!
It has also made Zar and I be super nice to each other these past few days. Except when I was running late for work yesterday, couldn't find my keys and was stressed about my patient. I may have yelled at Zar a bit as if he had hidden my keys and told him he couldn't just have himself a good soak in the tub when the kids were awake and I needed to leave. And then stomped out.
So I texted him later to apologize, and to apologize for waking up screaming the night before when Ella fell out of bed, and for falling into a Benadryl coma at 8:30 the night before and not packing the diaper bag. And he said it was okay, and he had found my keys in the diaper bag I didn't pack, and Ella made a big boom when she fell out of bed and scared him too, and he understands it's stressful when you can't find your keys, and that he loves me.
I texted back "Oooh I can feel heaven's blessings flowing unrestrained."
And he wrote "You are a dork."

Vote for Fictionist!!

2011-05-11T19:57:00.000-06:00

Hey. So I had been voting for Fictionist all along because I'm friends with Stuart's (lead singer) big bro Andrew. So today I actually decided to listen to them, and turns out they are AWESOME. So go vote for them, because they are great, and from Provo, and Mormon, and all that. I even put up their badge on my sidebar. You just gotta click 5 stars. That's it. Woo!

2011-05-11T17:31:00.000-06:00

Ava got this book at her 1 year check up yesterday. (All well. Small body, big head. Lots of shots. Slept for 16 hours afterwards. It was crazy.)
Ella was looking through it while waiting for the shots, and began to name the obvious characters within. The little black girl with piggies is clearly Ava. The blond with piggies is Ella's blond friend Caro. The pale (boy) in blue, obviously, is Ella herself. The black boy is friend Elijah, and the pink headbanded child on the trike, clearly, is daddy.
Kids are awesome.
A few hours later Ella was perusing the Victoria's secret catalog (not normal bedtime reading material, I promise) and announced that one of the models, a blond in a white "bombshell" push-up bra, is also "Like Daddy." That is one I would have happily claimed for myself, but apparently not.
Will have to get some tips from daddy.

Happy Happy Birthday Ava Dear!

2011-05-09T22:05:00.005-06:00

Ava's first birthday was a wonderful celebration of a wonderful girl. It was such a relief to focus on celebrating our incredible Miracle Baby (they have all been miracles in their own way) and just be happy. I "went overboard" on the desserts according to all, especially Zar, but you can't have too many treats when partying, right? Ava smashed a cupcake and clapped for herself, and then enjoyed a strawberry and some melon, much more up her alley. She's not a big candy fan. Crazy, I know. Her beautiful birthday cake was made by a friend in our ward, Tiffany. She dropped it off at our house on Saturday while I was at work--within minutes Zar called to say Ella had climbed on the counter and stabbed it repeatedly with a pen, and broke off the top of the "1" and consumed it. Sigh. A bunch of flowers on top hid the holes and it still amazing! Ava charmed in her gold tutu and headband and Ella disappeared into grandma's backyard with her buddies for a few hours and slept like a rock afterwards. Even the weather cooperated! It was a joy in every way, just like our Ava. Happy birthday sweet girl! We thank Heaven and our lucky stars for you every single day!

Birthdays Dresses

2011-05-04T15:48:00.004-06:00

Ava's Birth Day

Ava is about to celebrate her first trip around the sun.
What an incredible first year she has had. What a special and beautiful girl. What a lucky family we are.
Getting ready for Ava's birthday has made me reflect on all my girl's birthdays. I realized today leaving the mall that all of them have had special Gymboree dresses for their first birthdays. (Except my sweet Lily. Something tells me what she will have in heaven will beat even gold tulle and zoo animals.)
When Charlotte turned 1 it was a huge deal, for obvious reasons. She had a sweet little pixie cut from her hair just starting to grow in from her big skull surgery a couple months prior. She had just started focusing her eyes and reaching for toys. It was very special. Her dress was a light blue sundress with embroidered zoo animals along the hem. So dear and looked so pretty on her. I still have it even though it has red mystery stains on it that won't come out. I guess she wanted to be sure no one else would get to wear it. She got a Jeep jogging stroller for her birthday. Shortly after she passed away I ran over it. Guess she didn't want anyone else enjoying that either.
When Ella turned 1 she got a pink jumper with a cupcake embroidered on the chest and a white cream shirt underneath with colorful dots on the collar. My mom also bought her a HUGE petticoat skirt in pink and brown (the colors of her birthday party) and a little long sleeve pink shirt with "1" on it in silver sparkles. She wore the petticoat happily on her birthday and since has thrown a giant fit whenever I've tried to force it on her. Little punk. She got a little rocking horse that Grandma named Taffy. When you push a button on it's ear it neighs and makes annoying trotting noises for the next five minutes. Taffy has been hidden behind the couch.
I've long planned Ava to wear a yellow dress for her birthday, after seeing pictures of a darling pink and yellow party online. I felt it would also be a good excuse for me to get some yellow heels, which I have always wanted. Finally after much searching I found a dress at Gymboree.com last night that was yellow and cute and called to put one on hold. Today I went to pick it up. While at the mall I discovered a couple things--the yellow dress wasn't as cute in person, and wasn't the correct yellow anyway, and yellow heels apparently were in last season. Or maybe the season before...I always take a couple seasons to work up the courage to wear what was "in" two years ago...
My little White Hoof in a Yellow pump I bought online which turned out to be too big, too mustard, and too stripper-esque. Figure I need yellow shoes for my brothers wedding anyway, so the search continues.

Anyway, I was thrilled to turn around and see The Perfect Birthday Dress for Ava, twice as expensive, of course, but with a vague Ethiopian vibe and gold, which is close enough to yellow anyway. She's going to look like a Princess. Stay tuned.

Fascinating!

2011-04-27T15:53:00.002-06:00

Check out the Over-The-Top (somewhat more) Showgirl-than-British fascinators I made for Royal Wedding Watching.

I've always been of the opinion that getting it all out there and FEELING the grief really is therapeutic and helps with the process. I am still of that opinion. But I've noticed lately I'm so much more sad after an all-out memory fest. Probably because the memories are often painful, yes. I don't know. I don't just want to push it down and focus on other things either, (such as work or cleaning up or menu planning or peacock fascinators) although that seems to help sometimes. I guess it's a fragile balance.
I also have been trying to linger on the good memories and let the bad slide on by. Even that feels like a punch in the gut sometimes. Sigh.
In good news, I have always felt like February and April are the most depressing months of the year; February, because it's awful and I lost two daughters in that month, and April because in High School it always just seemed to be the worst and my crush/boyfriend/best friends/teachers always seemed to treat me unfairly that month. So I think I convinced myself it was bad news, and that feeling has stayed. In fact, I tend to wake up with the words of a cheesy puppy love poem I wrote in high school going through my mind--

It's April in my little land
And I'm still waiting here
The skies a grayish whitish hue
that's been gone for a year
And I recall an April past
that held a best friend's smile
who walked with me and teased and laughed--
we haven't spoken in awhile.

And then I want to barf.
But where I was going with this is that April is almost over, and maybe the sky will finally turn blue and not this infuriating anemic pale it's been for weeks on end. Yuck. It was blue this morning and I, dedicated to finally becoming "A Runner" loaded the kids up and drove 25 minutes to the cemetery to push them around in my $27ratty double jogger I found on KSL (similar to Craig's List, non locals). It was somewhat awesome. I love that cemetery. I parked a mile away from Charlotte and Lily's grave and made my way there past prophets and pioneers, fox holes and owl's nests. I re-gathered the plastic eggs and flowers we left there on Sunday, and went back the way I came. I even ran a little. (Turns out the hills are even more hilly when pushing two toddlers.)
I will do it again. But I will bring two string cheeses and not expect Ella, age 2, to share. Foolish of me, really.

Evie and Rose

2011-04-26T12:07:00.002-06:00

Just posting this picture to show the twin cousins in their matching Easter Dresses, all the way in Colorado. The fact that Uncle Ben is wearing weenie little blue Bunny ears has nothing to do with why I chose this one.

Happy Easter

2011-04-24T20:10:00.005-06:00

A smattering of our Easter Antics.

I've Been Here Before

2011-04-19T16:51:00.001-06:00

Remember how I mentioned I was about to retire to my room and make of list of what I want to be? Well I did. Maybe more on that later. What I wanted to share was the gift I found in the making of the list. I grabbed a blank journal I noticed on top of the refrigerator (perfect place) to sit in bed and write in, and found a few unblank pages. I know I've said again and again that my grief for Charlotte is so different than my grief for Lily. At least that is what I remember. (And we know how reliable my memory has been...)
But I found this I must have written one night in bed three months after Charlotte died, and it is so familiar. So what I am feeling now. What a relief...kind of...to know I've been here before and survived:

It's memories of her Lasts that grab me by the throat at night. The Wednesday evening her saturations began to slip down, one number lower, now another, while her respirations crept up. The night in the ICU the nurse and I bathed her and she stared at a light up aquarium while I washed her back and this thought arrived--This is the Last. This is her last bath. I put Mickey Mouse socks on her after washing her swollen feet. These will be her last socks. A week earlier she had worn funny black socks with red flames on them to her preschool Valentine's Day party--her last school day. Her Last bus ride.
The day after her last bath I took pictures of her, a bipap mask pressed harshly against her face and tired eyes gazing back at me. I posted it online, along with snap of myself, puffy, tear stained, with the caption "This is what "Spent" looks like". Shortly afterwards they drugged Charlotte to make her mask bearable, and she did not wake up again. The Last.
And Finally--The Last Night. I guess it makes sense that the last night comes again and again--at night when I can't sleep as I couldn't that night. First because my mind was racing in the dark, seeing her birthday again and again, seeing her hands, her hair, and then because I was perched in a rocking chair at her bedside staring as her lungs became stiff, stopped moving, her blood filling with acid.
Seeing the pile of clothes I had bought a few weeks earlier--82 dollars of sweet toddler clothes, size 3T. Even as something told me not to, I bought them, defiant, because shopping is proof. "She will need these clothes" I told the little voice. "See? I just spent 82 dollars on them."
3 Months. A quarter year. A season. A trimester. The protective walls are coming down. "Hold my heart!" I whispered to Charlotte just before they closed the casket, and the crushing I anticipated when the lid was shut did not come.
And yet, it is coming now. Does she have better things to do now? A fading season of blessed, ignorant comfort. This grieving is easy! She is so close!
And Now-
The casket is finally shut.

I miss both my girls. How unfair that the sweet memories aren't nearly so vivid.

Twists!

2011-04-14T21:39:00.002-06:00

Ava's First Hanging Twists!
Can't believe she held somewhat still long enough for me to do this. Again, hopefully in a couple years I will look at these pics and feel sheepish, but I'm quite proud right now.

2011-04-10T21:40:00.002-06:00

Three Diapers.

Now that I'm not a Special Needs Mother...

It's funny that I'm trying to figure out where I fit in. It's funny I've been a mother for six years but my oldest daughter (on earth, of course) is two and my youngest is nearly one. I've dealt with so much, and yet I've never dealt with potty training. It's strange feeling like such an old soul and yet so inexperienced. And now I'm supposed to just go on and figure out my place, learn to braid hair when I've mastered g-tubes and CPR. Worry about preschool politics when I'm comfortable (so to speak) with life and death.
And so I'm trying to figure out where I'm going from here. Obviously I'm a mother of two(four)tiny daughters, and a wife, and that's where I want to be. Where I always wanted to be. Suddenly I'm back on the track I diverted from that day when my doctor called me at work with "off" test results, but with a lot more experience and, well, depth. I'm grateful for the depth.
I'm grateful for the strength and maturity I would not have otherwise. But I'm getting used to the low stress level and I'm finding little things are getting to me again. That's not where I want to be. So, mom, I'm sorry I freaked out today. Apparently I don't have enough to worry about anymore. I'm going to withdraw to my room, and make a list of what I want to work on from here, along with the potty training and the hair care and the vitally important but somewhat everyday parenting chores. I guess I had better focus on building myself up too, now that life has slowed down and I'm being allowed to drift. I've spent the last few years holding on white knuckled through the rapids, and now I feel like I need to pick up my paddle and dig in.

For the Record...in case I forget later...

2011-04-03T20:25:00.004-06:00

Note to Self--this is your Husband

Lately you have probably noticed I have made various statements such as "I barely remember..." or "It's all pretty blurry", or "I remember doing this...and that's it." And it's true. My memory is not what it once was. It's been frustrating and sometimes I work myself in a tizzy and convince myself it's early onset Alzheimer's, (having read "Still Alice" a few months ago...I remember that) but I have been known to over blow symptoms and assume the worst. (I am: 1)a Nurse and 2) the mother of two children who had very rare and serious illnesses.) So you can't blame me.
Yes, frustrating, but minor. My spelling is going downhill, occasionally I sit at work staring at the computer screen unsure of what command I'm trying to remember that I usually do automatically, and it's harder to separate the "What I've Done" from the "What I was planning to do" and "What I considered as an option" and even "What I dreamed about last night." There is no more "I distinctly remember..." although I find myself saying that a lot. Especially to my husband. "I distinctly remember buying starch." And yet there is none to be found. Or he insists that I made some sort of statement or promise that surely I would never make. Surely not! And yet he insists.
This got especially bad right after Lily died. I chalked that up to grief and mommy brain and postpartum hormonal stuff. Seriously, everything for the past few months is a soft warm blur. I would look at my cell phone and see whole conversations I had with friends via text message that I had no recollection of. The most crazy example was a friend who offered, via text, to bring me bread and jam, then did so, and hung out, and I didn't remember this occurred until I saw the text message evidence and found the freezer jam. (Which was a happy surprise, but somewhat disturbing.) I now remember the bread, sitting at the counter with her, but nothing else. Not what we talked about or if my kids were there or if her kids were there...nothing. (sorry, Julie, I love you!) But that's grief for you. Just to assure you, I never forgot to care for my babies (other than forget to pack socks) or go to work, or wash my hair (that was on purpose.) I'm not at all DANGEROUS, just somewhat...not so smart.
My memory seemed to be improving the past couple weeks and I was, as mentioned, "waking up." Chalk that up to spring, to healing, etc.
Then this past week, it got worse. And then I had an aura. I have had auras three other times in my life, all within the past couple of years, during which, part of my vision goes all swimmy and sparkly and white, like I had been staring at a bright light and was now partially blinded. All other times this was followed but an extreme headache, so when it happened the other day, I rushed to take a pain killer and warned my husband I may be down for the count. Then it went away. No headache.
Tonight, I was upstairs putting away laundry and dropped Ella's Owl jammies down the stairs to put her in. A few minutes later I came down and they were nowhere to be found. I went back upstairs, thinking I just MEANT to drop them over, but no luck. I looked around, and thought maybe I had put them in Ava's drawer, but no. Or the diaper bag. Grrr.
Then I noticed my vision swimming, and ran for the ibuprofen. And decided I was losing my mind. I got online and searched WebMD and did some googling, and read some articles. Just as I was coming to my conclusion, Ella came around the corner carrying her Owl Jammies, which I HAD thrown down the stairs after all. She had hid them under a throw pillow on the couch. And then the aura, as suddenly as it came, went away. (It had made it quite difficult to do my googling, but went away as soon as I found the culprit.)
Wait for it...I have....

PMS.

Well you can't blame me. I haven't had a cycle since 2009, after all. And up until then I had been on birth control pretty much continuously (except during my failed birth control pregnancies). It appears to be all hormonal. Just like my lousy 13-year-old-boy skin, my occasionally wild fury, (Ah yes...that episode I didn't mention in Primm, Nevada when my kids refused to go to sleep and Ella figured out how to open the hotel room door...and I thought she was just going in and out of the bathroom in the middle of the night) and now the memory and auras and hunger and exhaustion (Zar had a few moments of terror thinking I might be pg again...) and maybe even my overuse of parenthesis.
So I'm probably not dying. Yes, my memory will probably continue to go as I age (don't forget, I am THIRTY now) and horrid migraines run in the family. I hope I get to keep my mind. And if I don't, at least I can find comfort in the fact I have been an avid journal-keeper since age 14, and blogger for the past couple years. In case I need a jog to the ole' memory. And if I forget to call you back, or thank you for the jam, or wear deodorant, I sincerely, sincerely apologize.

Disneyland trip (One) 2011

2011-04-01T20:48:00.003-06:00

Home.
I love Disneyland.
I do not love driving from California to Utah in one day, which is what we did today. We got up at four am, I mistakenly packed the deodorant and toothbrushes in the wrong bag and couldn't locate them, and the kids were less than thrilled about the wake up call. On the way we were trapped in accident related traffic twice, (one involving Life Flight, which kind of put things into perspective) and Ella threw up twice, requiring two clothing changes. Ava kept her green beans down without issue, but treated us to long periods of wild furious screaming. Now we are home, bathed, surrounded by giant suitcases of dirty laundry and having eaten nothing but popcorn, nibs, and McDonalds all day, so I'm having trouble gushing about Disneyland as I would like to. I will. Just after a night of sleep in my own bed with my own pillow and then a lovely day at work after which I'm sure I will come home to a clean house full of folded clean laundry. (fingers crossed!)

A Week Off

2011-03-27T08:06:00.001-06:00

See you Later!!!

Just A Dull Daily Update

2011-03-24T20:56:00.004-06:00

This Pic is NOT from Today.
I did not take any pictures today. It's been a rough one and bedtime cannot come soon enough.
Ella has developed a little tummy bug and and woke up miserable this morning. She just lay in my bed watching me get ready for the day with glazed over eyes. It was quite sad. Later when she was talking to Grandma E over the phone she was trying to explain how she felt and started crying. She was feeling sickly AND discouraged. After throwing up pink pedialyte and a couple raisins on me, she fell asleep on the couch right during Ava's morning nap, which was a relief. Ava has learned to clap in the past couple days and wore herself out practicing.
I bought some darling new clippies for Ava last night--sparkly butterflies and flowers, and when Zar went to take the trash to the curb this morning he grabbed the plastic bag with the clips and tossed it in the trash. Strange because he has NEVER thrown anything out before without being asked. By the time I thought to ask him if he had thrown out the bag, the garbage truck had come and gone. Sigh.
Well Ava is asleep and Ella, who is feeling much better, is demanding "Mommy Bed" which means we will be reading various books for the next 45 minutes (current favorites: Why Mosquitoes Buzz in People's Ears and always, always Goodnight Moon) and then I will toss her in her crib and look forward to a day of work AWAY from home tomorrow, as every day, truly, is a work day. Am I right ladies? Of course I am.

Less Words Wednesday

2011-03-23T15:23:00.004-06:00

My First Attempt at Rolling Twists for my Ava, and Ella sharing her creative talents with her sisters in heaven.
I said enough yesterday, and I just cleaned toddler throw up out of my car, so I'm going to have a "Less Words Wednesday."
:)

Yes. A Rant.

2011-03-22T14:43:00.003-06:00

You may not know this about me, ;) but I have a rather diverse family. My first child had severe developmental delays, required oxygen, tube feedings, and a wheelchair. When she was old enough for preschool, I went to her IEP meeting all excited to put together an Education plan Just for Her, that focused on what she needed and not on what other kids her age needed. I left in tears when the woman (who knew nothing about, well, anything) said that our district believes in inclusion and it's "Really Good for the Other Kids" to be around kids like mine. Well to heck with the other kids. My kid doesn't need inclusion, she doesn't need to be sitting alone in an over packed classroom in the corner with an overstressed teacher who doesn't have time to notice she is pulling her oxygen off. She needs a special program. She needs to be safe. Luckily, as aforementioned, this woman was totally ignorant of the field she was working in, and Charlotte, on oxygen, could not go to a "regular classroom." She went to the "Medical Hub" where she belonged, and she loved it. And when she stopped breathing on the bus, someone actually noticed, which was a plus.
My 3rd child is black. At 10 months, I am already asking other moms about diverse preschools, and hoping that growing up in very vanilla Utah will not teach her that all that matters are her differences. I'm sure there are many blog posts upcoming on this one.
My 2nd child will be starting preschool this fall. And right now, I'm nervous. More nervous than I may be when Ava starts. And here is why.
"Parents Resist Anti-Peanut Rules."
I'm just floored at the selfishness, at the audacity, at the level of perceived entitlement.
Really?

Apparently a bunch of moms with too much time on their hands and not enough actual strife in their lives are protesting at their kid's school where a six-year old little girl with a life threatening peanut allergy also attends. Apparently they feel the school is taking too many precautions and disrupting their own children's education with all the hand washing and mouth rinsing. Oh, and they aren't allowed to send peanut butter and jelly to school, obviously. And there is a lot of counter disinfection going on. And a peanut sniffing dog came during spring break and sniffed out the school. And at class parties they are only allowed crafts and games, not treats.
Boo-Hoo.

I, of course, take deep offense due to the fact my child has a peanut allergy. (Although not nearly as life threatening as this child's, luckily). The other parents want this girl home schooled so their lives aren't disrupted. Guess what!? A free and appropriate public education IS something we ARE all entitled to. And part of that education along with cursive and basic math and cellular biology is learning to deal with life and other people. Learning a bit of sensitivity and that we are all different with our own strengths and weaknesses. And maybe if having a Reese's, even if you REALLY want one, is going to potentially kill someone else, you can wait until you get home. And if I think really hard I can think of other examples of parents protesting against certain people attending their kid's school throughout history. And I would think and HOPE we had learned our lesson.
Sure, be annoyed. Peanut butter and jelly is part of American childhood. Peanuts are in EVERYTHING, either as an ingredient or processed with. It's obnoxious. And maybe the way our food is produced is what really needs to change. But until it does, how bout you stop throwing a great big fit about not being allowed to pack a loaded gun in your kids lunch bag? If you feel like your kid isn't getting enough reading and math because they are waiting in line to wash the peanut contamination, e. coli and influenza off their hands, how about you consider home schooling? Then your kids don't have to ever see or deal with anyone different or with different needs. And you can teach them that nothing matters more but their right to a cupcake on their birthday.
Guess I'm for inclusion after all. Would my views be different if I had four healthy typical not remotely out of the ordinary kids? Well, then I would surely be too busy to protest anyway.
Check out the other headlines, Crazy Self Indulgent Entitled Moms. You can surely find something worthwhile to campaign about.

Waking up

2011-03-22T13:58:00.003-06:00

This morning at the Children's museum Ella brought me a book about seasons. When we got to winter, it read "Winter is for sleeping." There was a drawing of many little animals in burrows under the snow. I sighed happily inwardly.
Ah, Sleep. If you know me, you may know I have been overly blessed in the sleep department. My children tend to sleep through the night from an early age. When I sleep I sleep heavy and deep. I have been known to (frequently) invite friends over on a friday night for Cafe Rio and Rock Band, and then sneak upstairs amid the hub bub at 9:30 and get in bed. Rude? Maybe. It was easier to get away with when hugely pregnant or when I breifly had three children age 2 and under, one on oxygen and tube feeds. I just really, really, need my sleep. Life looks so much brighter on a full night of it. A solid eight hours is like air for me. Like a diet coke and an ibuprofin. As in, vital for energy. I will choose sleep over nearly any other activity. In fact I remember my dad waking me up at four AM to catch a plane to Hawaii as a teenager. And I remember thinking "Eh, is it really worth it?"
But if winter is for sleeping, spring must be for waking up.

"We should honor the Savior's declaration to "Be of Good Cheer". Indeed, it seems to me we may be more guilty of breaking that commadement than almost any other!"
-Elder Jeffrey R Holland
The last few months...or really, the last year--seems to me like a brief and blurry dream. Things that happened 12 months ago seem so far distant but my pregnancy, Ava's infanthood, Lily's life, seem so fleeting and quick that it's hard to recall much about any of them. This is one of the reasons I feel as though I'm greiving Lily so differently and so deeply--it's almost like she wasn't here. I don't know why I remember so little. Probably because I was in survival mode, probably because I was focusing on just getting through the day, probably because I've been pregnant three times and my brain is permanently fried.
But I'm ready to wake up. I'm ready to be happy, and to let go of my troubled heart. I know I've been blessed. It always seems to me that each of my girls is their own kind of miracle. And my sweet husband is a rare and precious gem who endures so much. (He loves when I mention him in my blog.) I read the above quote the other night and it woke me out of my blurry dazed survivial sleep mode. Life is good.
Still.
Compared to most of the world I've endured so, so little, and maybe it's time I recognized it. Two girls at home and two girls Safe at Home. A strong hardworking loving husband. A great part time job and big ole mini van. Faith that it's all for my good. And nearly 365 solid nights of sleep a year.

2011-03-16T17:49:00.003-06:00

Feeling totally uninspired. A few weeks ago I had so many things I wanted to blog that I considered doing more than one post a day, which I do not do. Now of course there is nothing and I wish I remember what was so pressing. I've said it all over and over--I'm okay, I'm having a hard time, I have peace, I'm falling apart.
So. Today.
I'm good. My biggest annoyances are that my husband keeps coming home from work later and later and it irks me, and that there is no way I'm going to finish this book before book club tomorrow night. Still feels indulgent to have such petty problems. What happened to life and death? Oh yes. I remember. Death.
And so I find myself seeping back into every day, run of the mill life. Practicing parting Ava's hair. Going to the zoo. Wandering Target. Going to work. Reading to the girls. Rededicating myself (daily) to getting regular exercise.

One of my favorite pictures of Lily is on my screen saver. Ella passes by and says "Oh! I see Lily!" So I pick her and put her on the stool looking at her sister.
"Oh, Lily!" she says.
"Oooh Lily" I repeat. "Where is Lily?"
"Right dere!" Says Ella, pointing to the screen.
"Yes, but where is Lily for real?"
Ella stares at the picture.
"In the bath."
"Ah. Yes. But where does Lily live now?"
"With Jesus. I get down."
And she's off to stuff her dad's socks in her potty chair.

The morning Lily died in Zar's arms, Ella and Ava were with us on the bed. Zar started crying and Ella looked at him and her eyes filled with tears. "I'm sorry daddy! I'm sorry daddy!"
And we all just sobbed. Except Ava, who looked from face to face somewhat terrified.
Ella was nervous and sad all that day. And that week, she didn't eat or sleep very well. She threw a tremendous fit at the viewing, laying on the floor and kicking, and then running down the sidewalk outside screaming with Grandma in pursuit.
But she's been fine ever since. She's very matter of fact. She brings me her book "What Happens When People Die?" and announces "Charlotte and Lily book." She never asked where Lily is. She watched the mortuary man carry her away that morning. She saw her in her coffin. She's only two. She probably (hopefully?) won't remember very much. But I think she will remember her dad crying. And I hope she will always recognize Lily's picture. And I pray she will always know that Lily, and Charlotte are with Jesus.

2011-03-15T16:34:00.003-06:00

Ella's Skin Reaction Test
The top hive is the control hive, number one is Peanut, and the rest are non-reactive spots tested for tree nuts, shellfish, egg, other stuff.

Got a call this morning that Ella's peanut allergy is actually LESS severe than it was last year according to her blood test! She had an appointment a couple weeks ago and her skin test was quite reactive, as you can see above, so we were thinking it had gotten worse which is the usual path. It's still considered "moderate" but there is hope it will continue to subside. Woo! The doctor saw Ava's name on the chart and asked if we needed to have her tested for peanut allegy, I said I wasn't concerned about her. That girl's system can handle anything. Last week she sat on my lap and ate bites of spicy chicken tikka masala. Loved it.
I've been feeling better. My extremely painful moments are not as severe or as often. We visited the cemetery on Sunday--a beautiful spring-y day, and went for a walk, looked for owls, and Ella smelled all the fake flowers we passed on graves. At our girl's headstone I said "oh I miss her" and Zar huffed "I miss them both." I explained that I do too, of course, but I am much more comfortable and at peace concerning Charlotte and her life. I hope I can get to that point with Lily in the next few years. I know what we went through with her was so, so mild comparitvely speaking, but some of the memories are somewhat traumatizing. Which I guess is true of Charlotte's life too, but time has softened the edges.
My daffodils are up and getting ready to bloom. Thank goodness for spring and the hope and sun it brings.

Busy-ness and Christmas

2011-03-10T15:06:00.004-07:00

I've been all for distractions lately. Luckily with the promise of spring, an upcoming Disneyland trip and a zipfizz I've had enough energy to go full speed all day and then crash into bed with little time to "think." As I think a lot of people know, that time in the dark waiting for sleep can be the hardest time. Difficult to stay busy when you are just waiting in the dark.
My latest distractions have been reading, Lily's headstone, planning Ava's first birthday party (she turns one on May 5th, yellow and pink theme, birthday banners, cupcake toppers, food that matches the color scheme...and tacos for cinco de mayo) organizing and getting rid of our overly massive number of baby girl clothes, thinking about preschool for Ella, and the Festival of Trees. Some of you may remember we did the Festival in 2009 with a butterfly theme which sold (yay!) for $3200, which went to Primary Children's Medical Center. They do this fund raiser every year, and people decorate an artificial tree, often in memory or honor of a child treated there, and donate it. The trees are all displayed for a few days in early December at the Expo Center, and people and corporations bid on them. It benefits PCMC which over the years has been a bit of a second home to us. It was a lot of work, but we had a lot of help, and it was a wonderful way to remember Boofus and a great kick off to the Holiday season...oh who I am kidding, I kick off the Holiday season in October.
Anyway, I didn't do it this past year, for obvious reasons, just too much going on. But this year I'm doing it. A friend and neighbor offered us a restored carousel horse for use with our tree, and I jumped at it. Pictured above. Yes it's in my basement, near the ancient box of diet coke, neon skis and Titanic poster. Wish I would've taken a pic before Zar took it down there. Anyway, it's cool. Two years ago I started buying pink and green ornaments for my planned theme for 2010, "Princess Pea" (another of Boof's many nicknames) so I have lots of of ornaments already that match the horse quite well. Last night online I discovered the Hallmark series of carousel animals they did a few years ago, and bought three of them. Kangaroo, tiger, and lion. So the theme has changed to Carousel Animals, with a big awesome Carousel Horse that will be sold with the tree. Obviously I will need a lot more animals, and a new artificial tree (missed the post Christmas sales, STUPID!) and ground covering, and screws and hot glue and garlands and tim tam or whatever that gold stuff is called. I'm pumped. If I can figure out how, I'm going to put a little donate button on my blog so if anyone wants to drop us a couple bucks in memory of Charlotte and Lily to the Festival of Trees/PCMC, that would be so kind. If anyone has any other ideas on how I might raise some monies, it would also be appreciated. I've thought about asking my company, do people do that? I'm going to try and spread the purchasing out all year as we are mostly self funded, and hope I can rein in my spending in other departments. (Costco, bane of my existence!!!)
So that's the latest. I'm proud of myself for DOING something and not just posting another "I'm sad, this is hard, I'm trying to have faith" post. It feels good to be busy, and when it's in honor of my girls, that's even better.

2011-03-08T18:51:00.004-07:00

It snowed like crazy last night. So naturally I decided to do spring cleaning/organizing today. I went through all the girls clothes and bagged up all the tiny baby girl things I'm not going to need again. There were a few special things I kept, mostly because I'm not ready to get rid of them. The blue and white summer dress that Charlotte wore. The outfit I dressed Lily in the morning she died--pink and green and white. The lamby sweater. The white and yellow gown.
Maybe I'm saving them for my sister's babies, maybe they will remain in the drawer until I pull them out and dress my grandbaby in them while her mom is out. Maybe in a couple years, during another spring cleaning, I will stuff them in the bag along with the too small 2T stuff that today is so fresh and cute and crisp. Hard to say.
It's been a month since Lily died. I hate waking up Sunday morning and immediately counting the weeks. I continue to have a hard time with the fact there are so few good happy memories. However I was reminded in a letter recently that Lily spent 40 weeks inside me that were warm and cozy and quiet, and only 14 or so out in the cold rough world. Four in the NICU with her mother hovering over her most days and the nurse the other. Ten at home sleeping and stretching and taking coconut baths. One week in the PICU. One day in a white dress in the temple. Four nights in bed in between her parents,sedated and bundled.
It wasn't that bad. It just wasn't particularly good.
But--
If she had been born still I would've been devastated. If she had in the delivery room I would've regretted never feeding her. If she had never come home from the NICU we would've said "If only she could have come home, if only she could have spent time with her sisters, if only we could have had her with us." If she had died before the terrible seizures began, we would have wondered if heart surgery was all she needed to go on. And if she had died in the hospital, we wouldn't have had that last quiet night snuggled next to her, and held her in our little family in the light of my bedroom window as she died.
So it was okay. As time goes on I can see the wisdom, I can see the pattern, I can almost, almost see the plan.
Some day it will be better than okay. I can hold on to that.

The R Word

2011-03-03T20:57:00.003-07:00

DANG IT, I missed it! Meant to write something yesterday, and can't figure out how to repost this old post. But here it is. Still holds true, but I feel more strongly about it now than I did then.

Whoosh.

2011-03-01T10:00:00.004-07:00

I've been lazy. Lazy with blogging, lazy with exercising, lazy with dinner prep. So
yesterday marked my triumphant return to early morning yoga. Sorta. I went once right after Lily died but it's all a blur. Unfortunately yesterday will be a blur too. Started out fine, yawning my way through the opening breathing and the first couple poses. Then I got nauseous. In case I haven't mentioned lately, this is a pretty intense yoga class--Birkram, so it's 105 degrees and an hour and half long. So it's not all that uncommon to feel pukey during it. So I took a sip of water and regretted it, and then the dizziness hit. I kept getting up and trying to participate, then would flop right back down on my mat. Finally at tree pose, one of my faves and the last standing pose before the floor series, I decided I was going to make this happen. So I stood in tree and then found myself leaning against the wall. I looked at myself in the front mirror and I looked LOUSY. Pale and sickly. The last thing I remember is my hearing sounding muffled and my cheek hitting the wall and beginning to slide. "Ha!" I thought. "I think I'm passing out!"
Again, passing out in Bikram yoga isn't all that uncommon, so I got very little attention. Then I got hit after class with one of the teachers saying "that's not uncommon your first class."
MY FIRST CLASS? Offended. I mean I may have taken a couple weeks off and I don't wear tiger print booty shorts, but c'mon. No doubt had I mentioned my daughter just died so THAT's why you may not recognize me, I would have gotten a new agey speech about my pent up emotions just overwhelming me today and that I really need to take time for myself to release and let go, blah blah blah. Not entirely untrue.
Luckily I felt well enough to go to work, and after hearing my story we all decided it was a good day for one of the nurses to get passed off on her IV Fluids Module, so I got to sit in a chair with a blankey and get a liter of saline in the name of training. Perked me right up.
In the future I will be sure to hydrate before going to 6 am yoga. Diet coke and raisinettes a la Oscar Party won't cut it, supposedly.
Loss of consciousness aside, I am doing alright. I still find myself looking for distractions to stay just ahead of the wave of sadness. I let myself lie in bed and be sad Sunday morning on the 3 week mark of Lily's death. I lay my head right where Lily was when she died. I cried a bit. Zar and I sighed and said Oh Lily, and then did our imitations of her funny little whiney cry.
Deep breath.
I don't wish she hadn't died. The way things were, it was for the best. I wish she didn't have seizures. I wish her heart had been healthy. I wish she had been more comfortable. I wish I could feel her close now. I could feel Charlotte close afterwards for a few weeks. Does that mean there is something wrong with me, or does it mean Lily is so glad to be gone from this place she isn't even looking back?
WHOOSH!
***
Okay. Good feeling. Good crying. Come up sputtering and spitting salt water. Shake it off. Back to the tasks at hand. Back to the other kids. Back to life on this rough little earth. Wait for the next wave to roll in.

ICLW

2011-02-22T16:40:00.002-07:00

I haven't done ICLW in a long time. You join a list of blogs and then for a week you all go around reading and commenting on the other list members blogs. It always turns out to be more work than I anticipate, but it's good. I always appreciate it when people on the list do a quick ICLW Intro post, and we are one one day in, so here's mine.
Married September 2002
Pregnant (on pill) October 2004
Charlotte diagnosed via triple screen, amnio, with partial trisomy 16, partial monosomy 9 in Early 2005, due to paternal balanced translocation. Chose to carry to term, expecting stillbirth.
Charlotte born June 2005 full term via c-section, 6 lbs 5 oz. Came home at 3 days to pass away at home.Lived.
Wound up pregnant again February 2008. (on pill). CVS fails, chose not to retest. Born healthy October 2008.
Charlotte, after living a happy, difficult, joyful life, passes away February 21 2009from complications from RSV.
Decide to pursue IVF with PGD. Unimpressed with local clinic #1, after some testing showing I'm ultra fertile and Zar has a pretty darn good percentage of healthy sperm, we change clinics, and decide to start IVF in February 2010.
Approached at work by a friend who knows someone looking for adoptive family. Meet birth mom January 2010. IVF canceled.
Find out I'm pregnant again on March 5th 2010. Pretty sure mother intuition tells me baby is not healthy. Confirmed via CVS April 2010. Same diagnosis as Charlotte.
Ava is born May 5 2010. I'm with birthmom in OR, delivered by my OB. Very special.
Lily is born October 17 2010 via c-section. I am told not to get pregnant again due to nearly ruptured uterus (FINE BY ME!). Lily spends a month in NICU, gets feeding tube.
Lily comes home. Adoption finalized December 2010. Lily starts having seizures.
Lily passes away at home in daddy's arms February 6 2011, after a short, hard, but meaningful life.
Now we work on the next phase, grieving, remembering. I figure if we are meant to have more I will feel it in the next few years or someone will approach us again--miracle of miracles. For now we are a family of four on earth, two in heaven, working on finding our new, new, new, new, new normal...again...

2011-02-22T09:48:00.003-07:00

Sunday was the 2 week anniversary of Lily's death. Monday was the 2 year anniversary of Charlotte's. So did I go for a walk, release balloons, pray, look at pictures, cry, laugh, remember, leave flowers? Nope. I managed to make myself so busy I hardly had to think about it. Sigh.
Last year on Charlotte's angel day we went to her grave with friends and family and did a balloon release and wrote memories of her and went to eat. This year I managed to wrangle a friend's shift from her at work so I could get the holiday pay. We did spend time with family but I've been sick and spent most of the time wrapped in a blanket on the couch. I feel bad, guilty even, but it is just too much right now. Too much too close together. I don't want to go see the fresh grave in the snow. I don't want to think about Lily's headstone, or work on feeling or healing, or talk much about any of it.
I just need to regroup for a minute. I'm feeling disconnected and feverish and tired. Right now I'm going to go take a shower and dry my hair instead of passing out on the bed to wake to a matted mess an hour later. I'm going to go to the grocery store for the first time in a couple months and make some meal plans. I'm going to take down Lily's baby play gym. Or maybe I'll just leave that up awhile longer.

Feeling is Healing...

2011-02-18T19:24:00.004-07:00

Ella's Famous "Pose" and Lily's paper Lilies

Friday begins my work week. I work Friday, Saturday, and starting this week, Monday. Sunday doesn't really count as a day off as it's soooo much work to get the kids to church and stay for the entire block. But we try.
Today I was feeling good and productive. I was sailing around on my Sketchers Shape up shoes, pounding out paperwork and sipping zip fizz every four minutes. And then suddenly, I thought of Lily laying in her daddy's arms less than two weeks ago. I thought of the hour it took her to stop seizing and breathing and my heart just constricted. Yes, I have peace, but those memories are going to be my "hard moments." With Charlotte it was the night before she passed, sitting in the corner of the hospital room with my husband, sobbing while the doctors worked to get an arterial line in my little girl, seeing her tiny pale hand against the blue sheet, the bright light, the blood. That is the moment that haunted me. I went to counseling a few times after Charlotte died, and talked about those moments. The therapist said "But don't you think Charlotte is watching you struggle with this and just saying 'Oh mom, I'm fine!" And that did it. That moment doesn't haunt me anymore. But Lily's still does. (Granted, it's been just a few days.) I have tried to imagine Lily saying the same words, but it just doesn't ring true. She was just a baby. She didn't say words. Charlotte *almost* did. And she laughed and smiled and had so much joy. Lily didn't. That is hard for me. I feel like I need to hold Lily. And obviously, I can't.
Perhaps I should consider going to a few sessions again, work through it out loud. So far I have done everything, and I do mean everything--to avoid this grief. To keep occupied with other things, my other kids, work, myself. This blog is very cathartic, but maybe I'm going to need a little more help.
I was able to stay at work today. I didn't even cry. I just stood by the drinking fountain clutching my chest for a moment until a coworker walked by, and then I smiled and sailed on my back to the desk. And I was relieved I was able to move forward with my day. And yet I know I need to feel what I need to feel or it's going to continue to attack me at inopportune times. With Charlotte I could replace those hard memories with happy ones, but with Lily, there are relatively few happy memories. She struggled. She seized.She lay in a hospital crib. She cried and slept. Once, maybe, she smiled. And that's hard. I wish I could see her now, happy, and focus on that. Just for a moment, I wish I could see her whole. A dream, a vision, something. Sometimes it feels a bit too dark to walk by faith.

A Gift of Time

2011-02-17T13:08:00.002-07:00

A Gift of Time: Continuing Your Pregnancy When Your Baby's Life is Expected to Be Brief
By Amy Kuebelbeck and Deborah L David PH.D
I've been meaning to share about this for a few weeks. While I was pregnant with Charlotte I was on the lookout for any books or resources to help me though carrying to term while knowing my baby would not be long for this world. The best resources I found were www.benotafraid.net and the book "Waiting with Gabriel", about a baby with only half a heart and his mother choosing to carry to term.
This book, A Gift of Time, came out a few weeks ago. I immediately bought it on my kindle, because I had been receiving email updates on its publishing for years. I had sent in an email when Charlotte was a baby about my experience carrying to term. This book is wonderful. It is informative, it is real, it is comforting, it is practical, and it is very sad. I wish I would have had this book while I was pregnant with Charlotte, and with Lily. Over 100 parents are interviewed and quoted throughout, and I am one of them. It makes me happy to see Charlotte's name there in print (even in e-ink) and hope her story will help moms and dads going through this. Out of my entire experience with Charlotte and Lily, I can honestly say the hardest time was while I was pregnant with Charlotte. The terrible unknown, feeling so alone, afraid of the birth, afraid of what she would look like, if I would even love her, etc. This book addresses all of that, and what comes after. In fact I read the last few chapters the night before Lily passed away. Even though I'm a nurse and I had been through this before, it was still helpful to read about the dying process, about the decisions that need to be made after death, about relinquishing Lily's body, which is another very difficult moment. Luckily that moment was made much easier by a very caring and respectful mortuary worker. Not everyone has that experience.
This book certainly isn't book club fare or casual reading, but if you happen to hear of a mother who has chosen to carry to term despite a bad prenatal diagnosis, I hope you will direct them to this book or buy them a copy. It covers EVERYTHING you go through. It also covers the first big decision, which is whether to carry to term or terminate the pregnancy, and obviously it is geared towards parents who choose to carry to term. This may not be the right choice for every family, but it was the right choice for us, (both times) and this book would have been so helpful to have. I'm so glad it's available and that I was a part of it!
I have been told I should consider writing a book about Charlotte and Lily, and I have even sat down a few times and tried to start, and never really got anywhere. If I never get around to that, at least I was a part of this.

2011-02-17T09:46:00.002-07:00

The Girls were Somewhat Excited to get Valentine Cupcakes

Just checking in today. Not feeling the drive to write. Locals--watch the Trib for my letter to the Editor about our stolen flowers from the cemetery. Should be printed sometime in the next few days.
I have about a zillion thank yous to write, and my goal is to actaully send them out and not just have the stamped and sealed envelopes on my counter for the next six months. Wish me luck!

One Week

2011-02-13T23:13:00.002-07:00

One week ago Lily died.
It's been a long, floaty, numb week. I don't remember Monday, Tuesday or Wednesday--just snippets. Sitting in the mortuary, walking towards the Cemetery office. I was surprised to see the charge for the adjoining plot (My spot, now that Lily took my OLD spot) on my credit card statement--Zar claims I was there when it was run. A few sad sweet moments dressing Lily in white. Then I remember standing in a steamy hallway with two friends at the spa...but the rest of those three days is lost to me. I remember Thursday. Which is a gift. Thursday was special and edifying. People shake their heads and wonder aloud how you cope with your child's viewing--talking to people, speaking to a crowd. I can say I wondered the same thing before Charlotte passed away, but now I know it's a combination of the Lord's tender mercies and your body's reaction to taking an emotional hit. Part of you shuts down. Your brain focuses on what needs to be done and then forgets. I think on a subconscious level you start to deal with grief and exhaustion and memories, but you don't become aware for a few days. And you sleep a lot.
When you become aware is when you start to feel it. You hope you can fall asleep as soon as your head hits the pillow because that's when memories come, and it's painful. Songs just knock you over. Your flowers start dying. And then you go up to the cemetery and find someone has pulled all the roses and lilies from the casket spray left on her grave, and probably given them as a Valentines gift. And left the torn apart left over greenery laying in the dirt. On what is clearly a fresh and tiny grave. And it's ROUGH.
But there are such sweet moments. Your husband's coworker who invites you to Sunday breakfast turns out to be married to a friend from school you haven't seen in years. Your friends send texts and call just when you need them. People write outrageously nice things about you on their blog. Your daughters just want to be held. Another bouquet arrives.

I'm nowhere near perfect. If I'm strong it's because of the last 5 years. If I'm handling it well it's because I believe in heaven, and because I'm somewhat numb. And it was very hard watching Lily hurt. And I have A LOT of help and support.
But you should know I certainly don't feel "Amazing". You should know I tend to let my family live from a pile of semi-clean clothes on the laundry room floor. I go to my cushy job twice a week and get to decompress and talk to adults about not-kids. When I go to my moms I don't lift a finger to care for my kids. I let her change them, feed them, clean up the sprinkles they dump on the floor, and I sit on the couch. When my mother-in-law picks up my kids for the day, I always say "okay, I will be there at 1 after I put away the semi-clean laundry!" and then I don't come until 6. Every...single...time. If I go to yoga at 6 am it's because a major component of this particular class is laying on the floor. If there is something full of carbs and sugar in the area, I will seek it out and consume it. My kids watch A LOT of Mickey Mouse and Elmo. I have been known to spend money I do not have. Zar told me the other day I have been snoring. I let Ella have way too many fruit snacks, chocolate chips, and sips (chugs) of diet coke. Occasionally Ava wears last night's jammies all day...and then that night too. I make snarky remarks to my husband. A lot. My car is a dumpster on wheels 99% of the time, until Zar cleans it out. I don't take care of my possessions, namely cell phones, cameras, and other small electronics. I'm often cranky. Most of my home cooked meals are a variation on chicken, sour cream, and cream of chicken soup. And I haven't cooked for my family in weeks, thanks to all the wonderful REAL meals people have sent. And finally, a few weeks after Lily was born, there was this bad smell in the refrigerator, and I kept throwing stuff out but it just wouldn't go away, and then one day I noticed a puddle of milk on the floor. I opened the frig and a GLASS BOTTLE OF MILK had EXPLODED on the top shelf, soaking the entire inside with curdled, disgusting, smelly old milk. How long had that bottle been in the back of the frig? That had to be A LONG, LONG TIME. And you will notice I did not immediately blog about that. I find I put my best food forward when I blog. So I will tell you now that right away I canceled my plans to go buy something needless and took everything out of that frig, and sanitized and wiped and scrubbed the inside, and checked the dates on everything else and of course, plugged in the Scensty. And told Zar I had FOUND the SMELL, HOORAH! Impressive, right? Not really. Because sometimes circumstances force us to be strong, or brave or have great faith, or to clean out the frig. But you do what you gotta do. Am I right?

2011-02-13T22:02:00.001-07:00

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Afterwards

2011-02-11T20:16:00.002-07:00

Lily's last night

Our day was beautiful. Despite the circumstances it is so gratifying and healing to have so many people take time to come see us and Lily and say goodbye. I was proud of Lily. That's still my baby there. She matters so much to me but how wonderful to know she mattered to others too.

We loved the atmosphere of Lily's viewing. We chose to have it at Larkin funeral home downtown and they had the most wonderful little setting for us. Instead of one big long room we were in a beautiful little collection of homey rooms with couches and tables and stained glass windows and dark wood and of course flowers and pictures and soft light. Lily was in her dear tiny white casket in front of the fireplace. She wore her beautiful white lace dress made by grandma, (that matches the dresses the girls wore in my header--Lily's dress wasn't ready for the pictures but thank goodness I felt prompted not to put it off.)

The day before we went to the craft store and Ella picked out stickers to make a card for Lily--Mickey, frogs, elephants, flowers. The card along with her mouse, a soft blue blanket she used every day, her special necklace and a pink handkerchief made by Aunt Stephanie was with her.

My Lilies for Lily craft was successful! It turned out so cute that even Zar admitted he was glad I put it together. We loved seeing so many friends and relatives (I got lots of compliments on my facial) and it was comforting to know so many people who never met Lily still felt close to her through my blog.

Closing the casket was the worst moment in an otherwise special and quietly joyful day. Just that feeling of finality. Folding her blanket around her, touching her cold little hand for the last time. It was tempered somehow by seeing her dad carry her little casket by himself to the car. It just seemed sweet to this mother's heart.

Zar and I said a few words at the graveside. So strange to be at that same spot again. The day was so similar--bright and warm for February. Balloons all around. Pink flowers. The same white teddy bear was waiting for me on a chair.

This is what I said--or what I tried to say:

Throughout Lily' short life I found myself so often looking over her sweet little body, and thinking how dear she was. She had especially dear little feet. They were perfect. At times I thought to myself that her feet were foretelling of what she would do in this life--crawl, maybe even walk. They were just so suited to life on earth.

As it became clear the last few days that Lily wasn't going to stay, I remember holding her feet in my hands and thinking "What a waste." It seemed so wasteful that she would have been given such wonderful feet that she would never use. And then this morning as I was getting ready the thought came to me that it wasn't a waste. She would use those feet. She would walk and run and dance. The parts of her body that were not perfect would be made perfect, and her feet were a foreshadowing of what her body would one day be able to do. Just not in this lifetime.

When we chose Lily's name it was to remind us that Lily was in God's hands and He would care for her, just as He clothes the lilies of the field. Again, this morning I was enjoying all the beautiful flowers--especially the Lilies we have received, and I thought that Heavenly Father doesn't let the lilies stay long on earth, but that doesn't make them any less special. In fact in some ways it makes them more special. He lets them bloom on earth for a short time and their beauty is not wasted. Lily's life was not wasted. Lily was worth it.

I will miss you Lily, and I am so glad you came to our family. I am so glad you are with your sister, and that we have Ella and Ava. None of us are left alone. For now your dad and I will stay here with your sisters, but there will come a day when most likely we will be with you and your sister, and Ella and Ava will be here on earth together without us. But someday we will all be together again. It will come full circle. It will all be all right in the end.

2011-02-09T16:17:00.002-07:00

So much to say! I will have to wait for later.
Tonight we are going to go get some good food and then I have my traditional (yes, I'm calling it a tradition) pre-funeral facial at my favorite spa. It did wonders for de-puffing last time (wow...last time.)
Thank you so much to everyone who commented on my blog, on the online obituary, on facebook, who called, sent flowers or a card, brought food or who simply thought about us over the last few days. We feel your love and support and the protective soft bubble it provides. And thank you to whoever called the mortuary and corrected my spelling just moments after the obituary was posted, and before it went to press!
I'm looking forward to tomorrow. I'm setting up a silly little "Lilies for Lily" craft for the viewing; Zar has made it clear he thinks it's a bit dumb but the thought has been nagging me for days and I'm going to do it. So if you are coming to the viewing, be prepared to do some cutting and taping. Last time (there it is again) Charlotte's funeral was a wonderful, spiritual, special day and I'm hoping for the same for Lily Pie. Although we aren't doing the huge funeral for Lily--a smaller affair seemed appropriate for such a small one,however, please anyone who wants to come, please come see us. Feeling your love and seeing how Lily impacted you is what will get us through the next few chilly months.
Much, much more, later.
Until tomorrow.

Obituary

2011-02-08T11:49:00.004-07:00

Click here for Lily's obituary, to appear in tomorrow's local papers.

Lily will have a viewing at Larkin Mortuary at 260 East South Temple at 12:30 on Thursday. There will be a graveside service to follow.

Thank you to everyone for their kind words, thoughts, prayers and comments. My phone has been out of commission (again, I know, I know) but it is back on today. We are enjoying time with family and getting lots of rest. Lily is ever close to our thoughts. We miss her little cry! Our home is so quiet at night without her humming oxygen concentrator, her clicking feeding pump, her beeping pulse oximeter, her little growling complaints. Cute sweet baby girl. We miss you.

I'm Grateful...

2011-02-06T22:04:00.003-07:00

Lily slept in our bed last night, and the night before. Yesterday I went to work only to find someone had come in for me so I went home and held Lily and bathed her and napped with her all day. Last night I took Ella into bed with Lily and I and we read books for an hour before Ella's bedtime. That today turned into a bright sunny February day, very much like the one two years ago when Charlotte left. That I had pictures taken of the girls just last week. We had a beautiful family portrait done at Christmas. That Lily's last night on earth was quiet and restful, and we were all together at the end. That at the end her daddy was holding her, just like he did for Charlotte. For hospice care. For social networking so I didn't have to make calls all day long and just spent time with family. And went for a walk. For Ava and Ella and the smiles they gave us today. For my brave sweet tender hearted husband. For our neighborhood and ward. For the respectful and kind man from Larkin Mortuary who carried Lily gently away wrapped in a soft blue blanket with her toy mouse. For dear friends willing to run errands, make calls, send food, give hugs, and say prayers. For my mommy and dad and sisters and brothers and in-laws and the rest of my wonderful family. That I don't have to pump anymore. That Lily let us know she was ready and then went within days. That she woke up a couple times in the last two days and was alert and bright eyed. That we were able to keep her comfortable. That in the last moments with Lily I was thinking of Charlotte, and my grandparents, and Zar's grandparents, and everyone else who I know were anxiously waiting for Lily to come Home, and that I was jealous. Jealous that while we were left aching and crying and holding each other for warmth and comfort on another cold February day, Lily was laughing and hugging and having the time of her eternal life. And that I know when my time comes it will be that much sweeter for having two daughters there to reach for each of my hands.

Lily Elizabeth Hayes

2011-02-06T11:38:00.005-07:00

Consider the Lilies of the field

How they grow, how they grow

Consider the birds in the sky

how they fly, how they fly!

He clothes the Lilies of the field

He feeds the birds in the sky

and He will feed those who trust Him

and guide them with His eye.

Consider the sweet tender children

who must suffer on this earth

the pains of all of them He carried

from the day of His birth

He clothes the Lilies of the field

He feeds the lambs in His fold

and He will heal those who trust him

and make their hearts as gold.

Lily went this morning to be with her Heavenly Father, Jesus, and proud big sister Charlotte.

2011-02-04T21:08:00.002-07:00

Lines from this poem have been running in my head the last two days:

God Speaks

Death is ugly?
Oh, my children,
No.

If you knew
The beauty
That begins where
Your sight fails
You would run
Run, run
And leap
With open arms
Into eternity.

But sad
Is a harvest
of green wheat.

And
So you would
Feverishly
Cling to earth
And finish
Your mortal task
I merely gave
Death
An ugly mask.

-Carol Lynn Pearson

We've bid goodbye to Lily, oh...maybe a dozen times over the past couple of days.
She has leaped to the seeming edge and then inched her way back more times than I care to remember.
I could be wrong--I was sure the end had arrived yesterday--but it can't go on like this for very long....
...right?
The important thing is we have been able to keep her comfortable with the help of hospice and for the most part it is calm and peaceful here. It feels right to have taken the mad dash to the ER and intubation option off the table. It feels good to be home.
Under these circumstances, death doesn't seem to wear such an ugly mask.

I'm Here to Keep my Eye on Her...

2011-02-02T17:56:00.003-07:00

Sisters...
Sisters....

Never were there such devoted sisters....

2011-02-01T17:17:00.002-07:00

Discoveries of Late:

1. Hospice is awesome. It's nothing to be afraid of. Today a volunteer brought over Lily's sodium and potassium so I didn't have to go out in the beautifully deceptive freezing sunny weather with a bunch of babies.

2. Jammie days also are nothing to be afraid of.

3. When people offer help, don't be embarrassed. Say thank you. People want to help.

4. Pandora. What? Where has this been all my life? Set up a "Killers" Station, a "Church" station, a "Beatles" station, and have done nothing but listen to my "High Sierra" station all...day...long for days...on...end--Dolly Parton, Emmy Lou Harris, Nanci Griffiths, country music of my late high school days, I'm in heaven.

5. Having flowers in the house just makes for happier days.

6. It's okay to eat real food. Sometimes when I'm trying to "eat well" that means I feel like I can't have lunch. So I eat small amounts of junk all day (and a spinach smoothie) and realize at the end of the day I have eaten no actual food. ('cept spinach.) The past few days I've been making myself a turkey and cheese and apple slices and stolen bacon from Zar's stash sandwich, and it's filling and delicious and then I don't eat as much junk. Weird.

7. I haven't figured out how to set up facebook on my new phone and it's made life somewhat better. Gave me time to discover Pandora.

8. Reading. This is thanks to my kindle. What did I do without it? Usually after the girls go to bed I go upstairs and read until I pass out and Zar watches TV until he does the same. Last night I made him come upstairs and I read aloud to him from the last book of "The Hunger Games" which I started reading to him on our trip to Vegas at the end of December. I only made it a partial chapter before I began to go (I fall asleep QUICK these days) so I dismissed him, but it was a sweet and tender 10 minutes. Zar is in love with Peeta.

9. I'm still addicted to and loving early morning Bikram yoga. Not every day, but a few times a week. For some reason it's much easier for me to get up at 5am to pump, get dressed and head off in the cold knowing I'm going to be doing hard yoga in a hot room for 90 minutes than it is for me to the do the same to head to a drafty gym and watch tv from a treadmill for 45 minutes. (or much less.) And I feel good. And in yoga you get to be barefoot.

10. Some days are going to be sweet and snuggly and I will listen to twangy music all day and hold my big two year old while she falls asleep for her nap, and bathe my little Lily in coconut oil and style her hair in a faux-hawk, and blow on Ava's tummy while she laughs like a loon until she cries. And the very next day I may bawl for hours because it's just so upsetting they weren't able to seat our whole family of 15 together at a restaurant on Saturday night, and oh yeah, my baby is on HOSPICE, right? But there are still flowers on the table. And turkey apple cheese bacon sandwiches. And faux hawks.

2011-01-30T13:50:00.002-07:00

holding my little lily so will be short. we are hanging in there.

The hospice nurse asked me the other day "are you able to cry when you need to?"

i said "oh, sure, you know."

But turns out, when I need to, I have no choice.

I'm glad it's not every day I need to just fall apart and get all good and puffy. But I'm glad I can cry when I need to.

A Lightness of Being

2011-01-28T16:57:00.005-07:00

Is it ridiculous that thinking of Hospice brought that phrase to mind?
We have been in hospice care for less than 48 hours, and I am in love with it. Making the phone call was difficult--my voice shook, I felt like the operator should burst out "oh you poor thing!" but she didn't.
Two nights ago Bill the night nurse came over and had us sign some papers, looked over Lily and pronounced her pink and precious.
The next day the day nurse, Sunny, came over, with the social worker. We discussed Lily, discussed staying out of the ER, and what might be done to make sure that happens. So throughout the day, I had five new tanks of oxygen delivered, tender grips for those slippery cheeks, tubing, a chaplain for emotional support, and our very own suction machine. No more 3 hour trips to the doctors for a good deep snuffing!
I love the idea that we have someone other than 911 to call in the night if Lily just doesn't seem comfortable. I love that, in that case, we have medications available and on hand to help her calm down. I love that all our needs--from oxygen to feeding supplies to "someone to pray with us" is available at one number 24 hours a day.
I just feel relieved.
It has really helped me get down to the good stuff--enjoying Lily. Taking a long nap with her in bed after an exhausting photo shoot with usually quite photogenic and camera loving Ella. Bathing, patting her, and loosening her goo and then being able to get in there after it! (tmi?) I just feel supported and taken care of and it is so, so comforting.
Last night I fell asleep on the floor at 7:20 and didn't wake up until Zar drop kicked me up to bed at 11. I was tired from the busy day with all our visitors, tired from taking care of three babies (one of whom screamed rudely at me all...day...long...) and tired from the slight illness I picked up after being barfed on two days ago. But also I think I was just relieved, and relaxed, and feeling like it was a safe time to finally just let go and briefly let down my guard.
Although I apologize to Zar for not responding to any of his questions, and not helping get the girls in bed, and not remembering all of this the next morning.

2011-01-26T16:41:00.002-07:00

Apres puke snooze...

We had a rough night. Lily didn't want to keep her sats anywhere near an acceptable range for more than a few minutes. This was a combination of the monitor, wriggling around, the tender grips that just won't stick well on those lotioned up cheeks, and of course, Lily. So although it was not so dire a situation as the numbers would have you believe, there wasn't much sleep to be had.
Went to McDonalds (again) because Ella was asking for the Park...and with the wet and cold back in town, that means Playland. During lunch Lily's doc called to discuss her echo that was supposed to take place tomorrow. There was some question as to whether she was healed up enough from her last PICU admission. I said she really didn't have any sort of infection at that time, but now, on the other hand, she is junky and coughing and I don't know whether it's from a virus or whether more fluid is backing up into her lungs. Either would be totally possible. We decided to give it a few days and see if she improves, and if not, decide whether to go ahead with the echo. I'm not even sure we want to put her through even that. I hadn't really realized that with it being a sedated echo, she would be intubated, something I wanted to be done with...but is it okay if it's for diagnostic and not heroic purposes? And I guess you need diagnostics to even get to heroics. There is no right answer. I don't want her to have another iota of pain in her life, but sitting around waiting for heart failure isn't exactly pleasurable. I decided it's time to call hospice.

Ella had been increasingly clingy today. About ten minutes after talking with cardio, she demanded a hug, and then wouldn't let go. She was sitting on my lap while I talked with a friend when she announced "I wanna feel better!"
"You want to feel better honey?"
"BUUURRAAAAUP".
So we pushed around the vomit with a rag best we could and headed home.
Our clothes are in the wash and Ava is napping, Ella is snoozing/watching Minnie, and tonight hospice is coming over to assess and admit Lily. I really think it will be a great resource for us, but it's still a hard step.
Deep breath. We are all going to be okay.

Let it Be

2011-01-25T18:17:00.003-07:00

We've been staying busy and happy these past few days. Get togethers with friends, almost an entire church block, two awesome girls nights out, (and the boys got one too), a yoga morning, and we even made it to the park yesterday for a sunny warm winter day on the swings.
I'm trying to take a different attitude to our current situation. (Thanks Aunt Carolyn!) I want to look back on this time and say "Remember that cozy special winter when Lily was with us? Remember how we just took it slow, hung out together, did fun things with the girls, and focused on each other?"
And so I'm focusing on just being well. Friends, good food (and a little junk), exercise, reading, taking deep breaths and letting Ella dump out her sock basket every 20 minutes. Only it turns out, if you leave the socks all over the living room floor for the day, she only dumps them out once!
As for Lily, every morning while the girls eat their breakfast I fill up the baby tub and give her a warm bath with coconut oil for her poor sensitive skin. I massage her head and brush her hair, massage her limbs and thump her back to loosen the goo. I dress her in fleecey footie jammies and hold her out for her sisters to kiss. It's a sweet and quiet few minutes.
With three little girls it's not always serene around here, but we have our moments of zen.

Alternate Reality

2011-01-21T17:40:00.005-07:00

Bowling. We went to see Lily's pediatrician today. Lily started satting low (as in, below 80) this morning at 6:30. Thought maybe she getting ready to go. Instead found she was full of boogers. Salined her and suctioned her (via bulb syringe) and decided to take her in for a good suction before the weekend. She's got some goop in her lungs. Awesome. The other girls have been had super mild colds, I think, and of course for Lily this is a big stinkin' deal.

On the way to the doctor's office I was half listening to NPR, on which they were interviewing a woman about video gaming, something I have zero interest in. This woman was a busy professional and also was very into online gaming, and had written a book about why gaming is really a good thing, and makes us into better humans. Or something. Her argument is that, rather than being relaxing, video games offer POSITIVE STRESS, that is, stress we choose, and makes us perform to our fullest capabilities. We work harder. We collaborate. We notice other's strengths and use our own to their greatest potential. We are focused, invested, and at our best.

This sounds ridiculous as I type it, but I found myself thinking that I am exactly in that place. I didn't exactly choose this stress, but I didn't say No when it came around, and I could have. I'm not saying that having a child with a terminal illness is a game, but it is an alternate reality, with different rules, and different values, and different locations and outfits and weapons. I am focused. I am being careful to care for myself, my family, and what needs to be done and letting the rest fall by the wayside. I am gaining strength and optimism from others who have traveled this road before. Yes, my house is more of a dump than usual, I haven't been to work in a couple weeks, I have two outfits I wear constantly--my "going out" outfit and my "cleaning/yoga/playing blocks" outfit, and both have stretchy waistbands, and it is what it is.

And I'm just doing what needs to be done. And I'm not relaxed. But I'm not out of my mind with grief or stress or depression either. Once in awhile I seem to "wake up" for a second and want to scream "THIS IS CRAZY!" THIS IS SO, SO SAD!!! WHAT AM I DOING???" Kind of like people probably do after spending hours gaming online. But I wouldn't know. I'm not a gamer. I'm just a mom with a baby who is dying. WHAT?! DID I JUST SAY THAT?? THIS IS CRAZY!!! THIS IS SO, SO SAD!!!

(insert clever reference to some sort of online game here.)

2011-01-19T15:26:00.004-07:00

Usually when I take pictures of Lily I get faces like this:Hmph.

So this afternoon, when Ella started throwing her entire toy box all over the room AGAIN, and the stupid cell phone insurance company sent me ANOTHER defective phone, and I was wondering how we manage to produce an entire load of dirty laundry EVERY DAY...it was quite a gift to walk in on Lily having a happy conversation with Tigger.

Oh hi Mom!

With her monitor not on she honestly seems to be doing a million times better than ever before.

Endure All Things

2011-01-18T17:06:00.003-07:00

We went back to the ER last night. Lily was holding her own on 1 liter, then went up to 2. Then needed 3 and that didn't seem to hold her. We called some friends who came and helped Zar give her (and I) a blessing. And then we went to the ER. I just felt like we should go.

Nothing was actually "done" to her. She was listened to extensively and that was it. We came home 4 hours later, but I'm glad we went. Here's why.

Last night I was at the end of what I could endure. I felt like I was watching Lily die, and I was terrified. I was afraid her pulmonary hypertension was getting a million times worse. I was afraid she was shunting blood all over the place. I was afraid we were nearing an "end of life" situation. I was right. And it's okay.

Lily is mixing oxygenated blood with oxygenated blood and sending it out through her body, so yes, her sats are going to be lower. This is because her pulmonary pressures are getting higher. Surgery would be unlikely to help, and it would be very risky and difficult and painful. Maybe meds might help, and we may give those a try. But she is comfortable and cozy, and as long as she stays that way, I'm okay.

We were advised to crank up her oxygen and just leave it. Don't even monitor her. (I can't do that, what with Ella turning the dial down, and the concentrator randomly turning off occasionally) but we turned down the limits. And once we got home last night, we all slept soundly.

We are going to go back in for another echo and make sure we are correct, and see what we can do to keep her comfortable. But at this point we aren't planning on taking any extreme measures.

Over the years, I have often said "THAT would be the WORST." I said it reading "Welcome to Holland" in my first week of Nursing school. I said it looking at clinical pictures of birth defects in class. I said it when I heard that a woman in our neighborhood was pregnant with a baby with no chance of surviving past birth, and she had chosen to carry to term. I said it when I was at an appointment with infant Charlotte and saw another baby her age on oxygen. I said it about kids who required feeding tubes. I said it, knowing it would happen to us, when I saw the obituaries of other trisomy kids I was familiar with. I said it when I read the story of a family who had lost one child, and then lost ANOTHER, to the same diagnosis years later. I said it when I thought about spending weeks in the NICU. I said it, over and over again, when I thanked GOD that Charlotte never had any (confirmed) seizures. And I said it again, after Charlotte died, when I thought of the alternative to her quick passing--that she would linger, and decline, and horror of horror, go into heart failure. And you all know what happened weeks, months, years after I made those comments. And what is to come.
I'm not going to say that anymore.

I would never suggest that choosing not to take heroic measures is the right thing to do for every family in our situation. In fact, many would consider it "heroic" to send Lily to the NICU that first day, or place a g-tube within weeks of birth, or have Charlotte get extensive skull surgery at 8 months. But those were all the right things to do for my kids, and I knew that going in. But this time, when the doctor said that surgery would be unlikely to help, and that her pulmonary hypertension is intrinsic to her chromosomal issue and not to her PDA I knew he was right, and I was somewhat relieved. As much as I want the miracle surgery and the short, precious, magic years with a sweet and perfect child with special needs, this time it's not meant to be. And I know that this...this isn't the worst.

2011-01-17T17:08:00.003-07:00

Okay. I'm going to vent a bit. I might be a big negative.
I haven't blogged in a few days because it seems every time I get it in my mind to do so, something happens that changes our game plan and I have to rethink everything I was going to say. With that in mind, this is where we are tonight.
We had another ER visit today with Lily. It was actually the 2nd time we rushed to PCMC this weekend. On Saturday she was having issues with her oxygen sats, we couldn't get her above 90, so we piled in the car and headed for the hospital. Once in the car she of course started satting at 100, so we headed for homecare instead (which miraculously is open on Saturday) and traded in our pulse oximeter for a new one, thinking the issue was all in our machine. We went up to Park City to do the annual ski weekend with my parents. Lily seemed fine the rest of Saturday, and Sunday. Then last night the same oxygen issues started up again. Turned her up, switched the probe, tried different locations, finally seemed to find a combination where she was doing okay, and went to bed. At around 1:30 it started again and we spent the rest of the night taking turns silencing the alarm. Honestly that's all we did. I really did think it was the pulse oximeter and we would deal with it in the morning. In the morning we did just that, decided it was her, and not the machine, loaded up the kids and came down the mountain. No skiing for us.
At the ER her sats were still at 85 on 1 liter O2, her regular being 0.5 L. We put her up to 2. No congestion. No fever. Moving air well. Chest x-ray actually looks BETTER. We decided she must be shunting blood strangely through her giant, messed up heart and we went home with the plan to call cardiology tomorrow and see if they want to do an echo. When we left she was on 1 L again, satting 99. Now she's on 2 liters again, satting low 90s.
The funny thing is she looks really good. She's active, awake, maybe a bit irritable but if it weren't for the dang monitor we would think she was doing better than ever.
So is this our new normal? Chasing her sats around, up to 2 liters, could even use more but our concentrator only goes that high?
We are tired and frustrated, and unsure what is right anymore. Why is Lily here? She doesn't have much quality of life. She sleeps even more than usual since we started her seizure meds. Her skin is forever breaking out and peeling since the amoxicillan rash. She is covered with bruises from the multiple IV attempts from our PICU stay. Now she is requiring a massive amount of oxygen. I mean, when does this end?
Our only "Hope" as been surgery to fix the multiple holes in her heart, which could potentially bring her oxygen needs way down and fix this latest shunting issue. But I'm certainly not thrilled about putting a tiny baby through open heart surgery when she has so many other issues on top of her heart. Zar and I feel like terrible parents when we look at each other and wonder aloud if she--well...would rather not be here. We keep waffling on the DNR issue; we discuss intubation and what that would accomplish, we change our minds minute to minute.
I guess I'm just looking for permission to completely fall apart for a second and say that this is just too hard. It is too hard with two other little girls. It is too hard when Lily doesn't seem to have much to live for. When it seems like most of her life is either spent sleeping or in pain. When she doesn't even seem to want to be held. When it just doesn't seem worth it, to anyone.
I believe in comfort care. I believe that death is not the worst thing, and focus should be on life, and the quality thereof, and not on just alleviating death. But of course it's different when it's your baby. When you are the one saying "no...do nothing."
My biggest fear is not surgery. It is not even doing the surgery and having it not help. It's this; choosing comfort care only, and then not being able to comfort her. Watching her decline. How long that would take. Just waiting. Just because an option is available, doesn't mean it should be utilized. Unless, of course, it should.

2011-01-12T15:19:00.003-07:00

Quick Update:
We're Home! Hooray for having the experience that convinced the docs to let us discharge from the PICU instead of making us camp out on infant unit for a few days.

No other near death seizures. Some continuing probable seizure activity--lip smacking, small desats, eye flutters. Will follow up with neuro soon. For now just keeping her monitored 24 hours a day and watching for scary seizures.

So happy to be home with girls. Ella welcomed Lily home by burying her in socks. (?) Two year olds are cool.

Awesome Ava is teething and her coping technique is apparently to "sleep it off." She wakes up to gnaw on a cucumber and then goes back to sleep. I haven't even had time to dose her up with Tylenol. Works for me.

Zar gets home tonight and he was able to get an earlier flight! Hope to see him in an hour or so.

Having entered "survival mode" I'm perfectly happy to be home with my girls for awhile and let the Keppra reach it's full potential. We also missed Lily's synagis dose on friday so she isn't protected from RSV. Hoping we can get that dose quickly, although after her last dose she had two big seizures that night. Didn't know that's what it was at the time though. Arg.

Quarantine for now.

A Day of Rest

2011-01-09T21:07:00.002-07:00

Random Pic of Ava and Popsicle because I don't feel like downloading hospital pictures.

We had a quiet day today. Zar stayed at the hospital last night and for some reason came home at 7 am...and then took the Sunday paper into the bathroom and clipped coupons for an hour. That's neither here nor there but shows our rather random thought processes at the moment.

The girls went to Grandma E's and went to church with them, terrorizing their ward, apparently, and Zar and I went up to be with Lily. It was one of those nice low key ICU days; discussing books with the nurse, reading, and nothing going on with Lily except the removal of the EEG probes, some horrific diapers and the weaning and removal of the c-pap and back on high flow oxygen. Oh, and a move to the "Old School" Picu section, a room Charlotte had a few times, but a good room with it's own bathroom, so we will tolerate it.

No seizures since the medication was started last night. She threw a couple of major fits today, flailing and screaming, which I guess could be a side effect of the medication. However it could also be a side effect of having air forced up your nose at high speeds, the occasional sinus bath when water from the c pap overflowed in her face, her sore bum, gas, diarrhea, having an IV or lack of any food since Friday morning. So I'm not going to worry about it yet.

Zar went back up to spend the night with her again. Hopefully by the time he arrives they will have started her on feeds, and they will have a quiet and peaceful night. We had decided if Lily had a good today and tonight we would consider it safe for Zar to go on his business trip tomorrow. Yikes. I feel like Lily will be just fine, but it is sure going to complicate my life for the next three days! Send us prayers that Lily will be good, calm, and uncomplicated. And the other kids too. ;)

2011-01-08T21:17:00.002-07:00

Lily's EEG and first dose of Keppra

The Celebration of the Insane--we found a cause for the Blue Spells!

What...a...day.

For one, it was very, very long. I cannot believe just this morning I rolled out of bed, put on scrubs and went to work. And told everyone Lily was doing great, and would be out of the hospital as soon as we could finagle it.

Well, since then Lily has had five seizures. And I can say seizure now, not "blue spell" or "episode" because we have confirmed seizures. She had her first seizure this morning before Zar and I got there, then another after Zar arrived, and then another while I was on my way up, having left work early, and then another, after being put on an EEG and c-pap but of course during the time the EEG was paused for adjustment...and finally, the last, which we caught on EEG and quickly confirmed was seizure activity. Which wasn't good news, I suppose, but not bad news either.

Prior to the confirmation we had ordered a DNR/DNI. Which means, we had decided that we didn't want a tube shoved down her throat, or her chest pounded on, if a blue spell was lasting too long and it looked like she wasn't going to pull through. That was rough. We felt like there was no reason to intubate, work to get extubated and then have her turn blue the next day and have there be nothing we could do. She was serious about the blue spells too, dropping to an oxygen saturation of 10 today while on c-pap. We hunkered down to wait for the next one, which we feared would be her last.

Then the docs came in with the news that there are storms in her brain, starting on the left and then traveling throughout, and once her brain gets overwhelmed, her heart rate and respiratory rate drops, her sats drop to nearly nothing, and then she has to fight to get back. Apparently she really wanted us to diagnose them, as this is the first time she has had so many so close together. Or at least that is how we are choosing to look at it.

We pulled the DNR/DNI to give her new meds a chance to work, to see if we can calm her storms. We had ice cream cups from the patient "nutrition" room to celebrate. (This was really more me...Zar had a harder time "celebrating") and we steeled ourselves for more PICU time than we originally anticipated.

Funny that a seizure diagnosis also brought hope.

First Post NICU admit

2011-01-07T18:10:00.002-07:00

Lily is in the PICU. She's okay though. At least that's what the nurse said over the phone 20 minutes ago. If you were to ask me I would say "She's FINE! Sheesh." But you learn that everyone has their own definition of "Fine." Apparently our nurse feels that no kid in the Intensive Care Unit can really be considered "Fine" so she said she was just okay, and then proceeded to tell me she was about to wean her oxygen down a little more. That would even get a "She's GREAT!" out of me. But alas, to each her own.

This morning at 4 am Lily started whining. I tried my best to snooze through it and chalk it up to "neuro-irritability" which I learned about from the Palliative care team yesterday, but Zar was up and more agitated than Lily. Yes, her monitor was also beeping a bit but she was Crying for heaven's sake. Anyway, Zar kept waking me up with his "Why is she so sad!?" and "What can we do!?" So finally after I had sent him downstairs for tylenol and albuterol, I decided I had better have a look.

Sigh.

Lily was indeed irritable, and also pale, and pulling for breath, and gagging a bit. Plus her heart rate was occasionally over 200. We started making ER plans, but then after the tylenol, albuterol and a prayer she seemed better and went to sleep, so I put her in bed with me and went back to sleep.

Today was supposed to be a busy day for us, with physical therapy at 9, synagis and doctor appointment at 1030, and hair appointment at 1230, but none of that happened. Instead, although Lily looked better, her heart rate was still too high for comfort and we decided we had better take her in. A few minutes later she spiked a fever of 102.7 so that just hastened things.

I drove her up, got her checked in, went through 7 IV attempts with her, learned that her urethra goes quite a bit "to the right" and ate a soggy english muffin with fake egg. We got to the PICU quite quickly; the hospital is practically empty or so it seems to me. Anyway, no pneumonia. No urinary tract infection. No RSV or Rhino or anything else on VRP. No more fever. Some extra fluid on the lungs, but after screaming through the IV sticks she seemed to open up those lungs and move air better.

So. We are in the PICU. It's all different. This is good as it's easier to separate Lily's PICU from Charlotte's PICU. This is our first visit back in nearly 2 years. Even the room numbers are different. Bed 19 is no longer bed 19. There is a lot more light. Those famed slushie machines I heard tell of were empty. It is FREEZING. Lily has the same mobile Charlotte had, very familiar and dear and somewhat difficult to hear. She's hungry and on high flow oxygen. I am home with her sisters, hopefully Zar will stay there tonight. We are worried about her heart function due to the lack of infection. Her urine output is down. Some question on g-tube drainage. But did get a very nice cream for her amox rash. Looked better immediately.

Hopefully things will continue to be fine, or at least okay.

Forever

2011-01-03T16:51:00.002-07:00

Ava was sealed to us in the Salt Lake Temple on Thursday.

The day before, Lily had two blue spells during the night, satting as low as 20, and then another one during the day. She pulled herself out of them but it seemed to take a little longer than the last time it happened. We considered going to the ER but we figured out nothing last time we did that, her lungs sounded clear and she had no other symptoms. Plus we would have to postpone the sealing. I said to Zar "if we cancel, when are we going to do it? When Lily's gone? There will never be an ideal time to do it." So we decided we would focus on Ava's special day and go up to the ER right after the sealing. Not exactly the "Family Wedding Day" I was envisioning. I had called Lily's cardiologist and left a message, and he called me Wednesday afternoon and after a discussion said he would call neurology for us to check for seizures. Neurology called 10 minutes later and asked us to come in the very next morning. Great. I said any other time, ANY OTHER TIME I would make it work but I really could not cancel my plans the next morning. I could tell he was annoyed with me, which I understand. They were bending over backwards for us. He said he would try to get us within a couple weeks.

It snowed like crazy Thursday morning, and of course I thought it would be good to schedule us at 9:40, meaning we had to be at the temple at 8:25. Fun. Luckily Lily had no other episodes and we got it approved for Grandma to be with her at all times before the ceremony for everyone's comfort. She also helped dress the girls in the gorgeous white dresses she had made for them. I guess Ella threw a huge fit over it (she's not a dress fan--she likes PANTS! PANTS!! WAAAAH!) so I'm glad Grandma was there and just not a soft spoken Temple Old Lady.

My mom had been misdirected once she arrived so for the next hour I had to keep hearing "where's your mom? She's not here! Does she know where to go? Did she forget?" I'm like "You know what...I can't really deal with this so I'm going to let it go." Turns out she was ready and waiting for us the whole time. I got to get dressed in the Bride's room with a bunch of lovely little Winter Brides and all their finery and fur shawls and such. They were all so nervous and cute. I'm sure they saw me putting on my cardigan and thought I was quite an old and unfortunate bride.

The ceremony was lovely, the girls all behaved and acted charmingly, and it was simple and sweet. It didn't matter that we had endured tons of stress over the last 24 hours. What was important was we were there with our daughters--all of them--and after all the stress of life, we will be together again.

Afterwards everyone was suggesting we grab some lunch, and we had to admit that Lily was having issues and that we were going to head for the hospital. That went over well. Once out to the car I picked up a message from Neurology saying if we could get there as close to 11 am as possible we could be seen. It was 10:53. We rushed up the hill and checked in at 11:07. Lily was examined and underwent an EEG, but it didn't show any seizure activity. There is still a fairly good chance that is what is going on, but we can't prove it at this point. We turned up her oxygen and will see what happens over the next couple weeks and call the doctor back.

We got to have a couple calm days and blessed Ava yesterday at church. It was wonderful and Ava's birth mom was there, which was so, so amazing and special. I cried when I saw her there. Zar did a wonderful job, blessing Ava that she would feel connections to both the family she has come to and to her rich heritage, and of course he put in my request--that she will be "noted for her virtue" which I feel is important. Hey...I remember high school.

I'm glad for the New Year. I'm looking forward to some quiet days and short, uneventful blog posts.

Year in Review

2010-12-31T15:55:00.003-07:00

Well I read my 2010<-(this is a link) year in review this morning and was happy to see I accomplished (and then some) my goals for 2010.
Yes, I'm approximately the same weight. Yes, I got a kindle and therefore have read a lot more which I am loving. I am trying to keep my car clean, but now that I drive an awesome mom van there is a lot more room for mess, and therefore it may just appear cleaner. Ella is walking; that was a good one. And I accomplished my biggest goal, of having a new baby, expecting a baby, or adopting a baby. In fact I'm going to give myself an A+ on that one.
Year in Review--without looking back on blog posts, just what stands out in my mind.
January 2010--set goal to have a new baby by Jan 1, 2011. Asked Zar if we could adopt a baby from Haiti. He said no. Asked if, just IF, someone knocked on our door and offered us a baby, if we would take it. He said yes. A few days later that practically happened. We met Ava's first mom, loved her, committed to her and Ava, and began our very short adoption journey.
February--I'm sure it was quite cold and unpleasant. I do hate February. Luckily we had a few marvelous days in Disneyland, always a highlight of the year. Ella LOVED the characters, so many cute pictures. Oh, and I dragged Zar in to an ENT to have his tonsils looked at. He has always been a big, BIG snore-er and I had begun videotaping his apnea episodes at night to prove he was practically dying. In fact this may have happened in January, but the surgery--to take out his giant tonsils and open up his apparently at some point broken nose, was in February. He bravely succumbed.
March--On March 5th Zar called saying he was coughing up a little blood. That night it seemed to be not normal, so we called the on-call ENT and he met us at the hospital. By the time we got there Zar was coughing up A LOT of blood. He rushed him into surgery and I went and camped out in the waiting room, all by myself as it was late at night. And I ate. And ate. And ate. I was really, really taken with how much I was eating, and how it wasn't even making a dent in my hunger. And I can eat a lot under any circumstances, but this was extreme. Zar was released from the hospital at 2 am, I think, and after he was tucked in a drug induced sleep I took a pregnancy test I happened to have. And you know the result. So I stood in the bathroom and cried and shook, and knew, JUST KNEW, that this was another baby with trisomy. I lay in bed and pondered our adoption, and this new baby, and decided that I was NOT going to get to the end of the year and have ALMOST adopted a baby, and HAD a new baby which had passed away, and NOT have a new baby in arms. From then on there was no question on going through with the adoption. Two weeks later I told Zar I was pregnant. He got a big ole rash from the antibiotic they put him on after his surgery. He was not too happy I had put him through the whole ordeal, but goodness it was sure worth it. (for me.)
April--I took Ava's birth mom for her first appointment with my wonderful OB. A couple days later I went back for my first appointment. What a jolly laugh he had. I told Ava's birth mom I was pregnant, and she was nothing but excited, and I was relieved. I went to the neonatologist, had a first trimester screen done, which came back low risk for down syndrome, but high for trisomy 13 or 18. Which pretty much sealed the deal for me. However we went ahead and did a CVS which showed another girl, with the same diagnosis as Charlotte. Many tears all around. Oh well. Forge ahead.
May--On May 5th Ava was born via c-section. Oh she was tiny and sweet, at 5 lbs 14 oz. Oh she was a good girl right from the start, oh how dear, so dear. I spent a few days in the hospital hanging out with Ava and her birthmom, watching movies, had a bad encounter with a very poor creepy social worker, who was eventually fired for what happened. Heh heh. Took sweet Ava home, and found that the upside of actually giving birth is you are THAT MUCH more tired that you don't realize how exhausted you are from caring for a newborn.
June--I was pregnant, I had an infant, I had a 20 month old, I'm sure I pined for a nap. I cut my hair. My sister had her twin girls a few weeks early, but they did great, and suddenly my parents had FIVE granddaughters whereas just months before they had one living and one in heaven. Sheesh.
July--Ella was afraid of the fireworks at first, but warmed up slowly.
August--We went to Newport Beach where I had the awesome experience of sobbing at the waters edge with my giant belly, screaming toddler, and confused and frightened 3 month old. Lots of stares. Figured I would have to live and die in that spot as there was no way I could get back to the condo on my own and my family had changed their usual beach spot for the first time in like 20 years. Said some bad words. Was rescued by my parents after some frantic phone calls.
September--Was pregnant. Getting bigger by the second. At some point Zar got a new job at WGU which was such a giant thrill I can't even tell you. I got off the phone and yelled "HOT DOG!" and then had to watch a few hours of Mickey Mouse Clubhouse when Ella heard me.
October--oh I was SO uncomfortable. I had been getting a massage every other week which was all that kept me going. I highly recommend prenatal massage from someone who specializes in it. Ella turned 2 and I made a cake with Minnies. Then I scheduled and rescheduled my c-section. On October 17 Lily was born in the same room by the same doc as Charlotte, Ella and Ava. She was BIG, 7 lbs 13 oz and my uterus had nearly exploded due to fluid issues, and I was advised not to get preg ever again. (tiny smiley face). Lily spent 20 minutes with us and started grunting, and was whisked off to the NICU where she did pretty well for a few days, and then aspirated her milk and was whisked up to Primary Children's NICU where she spent the next month.
November--Lily got a g-tube and a nissen, went in and out of heart failure, was set up for heart surgery and then canceled, and eventually, finally, came home. A week later she had a couple blue spells and we went to the ER, but never really figured anything out.
December--Our adoption was FINALIZED!! We took Ava to the temple (post coming soon). Ella and Ava began playing together like sisters instead of just crawling on each other, laughing and clapping, so, so fun. Lily had more blue spells, had a normal EEG, and heart surgery may happen in February. She also got a terrible rash from the antibiotic she was put on to prevent UTIs. Rough month for Lily, let's hope 2011 treats her better! I went back to Bikram yoga after 2 years and am currently obsessed.

By January 1st 2012 I will:
Be approximately the same weight, but HEALTHY. Fit even.
I will have made many wonderful memories with my family. I will still be blogging. I will be a calm and peaceful mother. If Lily is still with us I will have done a good job on her daily physical therapy, and held her a lot. I will have devoted individual time to each of my girls, and my husband, and myself. I will have mastered Ava's hair care. I will have put Ella in a fun and safe preschool. I will stay positive. I will not FREAK OUT when the house is a mess and act like I'm going to end my life over it.
This was a wild, wild year. I am hoping for a more quiet one in 2011. 2010 gave me many, many gifts and now I just want to enjoy them and care for them and give them many snuggles.

Happy New Year.