Sunday, December 27, 2009



Merry Christmas!
My Christmas miracle was Ella looking at books upside down next to the tree and knowing Charlotte is celebrating in Heaven.
The greatest gift of all is Christmas itself.

Wednesday, December 09, 2009


I have been busy and not in the mood to blog.
I remember a psych class in nursing school, talking about how the Holidays are especially difficult for those who are grieving. I actually remember thinking that I felt I would have an easier time during the Holidays, what with the focus on the Savior and Goodwill to all men, service and Joy to the World. So life decided to teach me a thing or two.
The Holidays are hard. They are wonderful. I love Christmas, and the last thing I would want would be for it to become a sad time. But Christmas definitely brings everything to the surface, the music, the the lights, everything seems to bring an achy, lonely feeling. Like something barely remembered but desperately longed for. I have to expect the first year to be the most difficult. I am still enjoying this time of year, and it's still zipping by too fast for me. Zar would have something different to say. But setting up the Christmas tree on a snowy day, I wish I had two little daughters here to stare at it wide eyed and fall asleep in the glow of it's light.

Thursday, December 03, 2009






Charlotte's First Festival Tree
"Fly Away Home"

Wednesday, December 02, 2009

I am so happy. Charlotte's butterfly tree we donated to the Festival of Trees raised $2300 for Primary Children's Medical Center at Opening Night last night! We don't know who bought it and aren't sure we will find out, but I am so grateful to them. It brought me so much joy to walk in last night and find out Charlotte's tree had sold and so many people commented on her beautiful picture. I left my camera in Zar's car so I will upload pictures of it tomorrow.
Thank you so much for everyone who helped decorate the tree, donated to the tree, helped with transport and reinforcing and especially to whoever bid on her tree! I could not have done it without you and what a great kick off to the Christmas season. I know Boof loved it.

Tuesday, November 17, 2009

Ella sorta likes having her picture taken.

Thursday, November 12, 2009



It's already a Charlotte day. Ella awoke for her early bottle at 6:30, and after fetching it from the living room floor, washing it, filling it with organic winder farms milk, heating in, stumbling back up the stairs and depositing it into my daughters waiting face, I got back in bed with my cell phone.
I scrolled through my various free shipping emails and eventually found my way to Charlotte's caringbridge site which I haven't updated since June and probably again until February 21st 2010 and perhaps never again. First I read the reader comments from the days after and the day of her death, and quietly cried next to my snoring husband. Next I read, from end to beginning, every jounral entry for more than three years, forty pages of tiny print news and frustrations and joy and deep, deep sorrow. I got that pit in my stomach again reading about cardiology appointments, always my most stressful and feared appointment with Charlotte, and rememebered our superstition that as long as I went to the appointment alone, the news would be good. If Zar came with us, or felt like he SHOULD come with us, the results would be disheartening.
I had forgotten the sly way Charlotte snuck her thumb under her g-tube and would try to pry it out. I hadn't thought much about the early, early days, when she couldn't hold her head up and didn't make eye contact and watching her suck on her hand was a huge joy to me. I had forgotten that while learning to sit up she would often throw herself backwards violently and laugh and laugh when I would lunge wildly to catch her. Her therapist suggested that maybe I should let her fall once so she would be more motivated to sit up on her own. I had forgotten about how once her hearing improved, I would sneak into her room while she slept and then wake her up singing her Booper Doo song just to see her startle to sound. For posterity's sake, here is that song.

Morning, Morning Booper-Dooper!
Morning, Sweet and Precious Booper,
Morning, Such a Darling little Booper!
Let's have a Ba-ba in the morning!

That progressed to "let's kiss the mama in the morning" and other variations, once she stopped having ba-bas.
I ended up reading journal entries until 8:20. I disproporionately wrote much more when she was ill or in the hospital, but it reminded me of all good, sweet hospital moments. When I overheard the nurse giving report and saying "Now, I know we always say this is the cutest kid ever, but really, Charlotte is truly the cutest kid ever" (okay, I had my ear pressed to the door listening) When Dr. Day called the room to check on her when he noticed she had been admitted, and then came the morning right after she passed away to apologize for not being there for us (and he had been WONDERFUL!), being so pleased to see Dr. Brownstein because she knew how to get things done, and would tell those dang residents what's what, meeting John Paul and his family, the visits from friends and family and jazz players, the New Years Eve we spent with Katie and Alex and Boof watching tv in a cramped hospital room, but they stayed to ring in 2008 with us. I remember chasing the ambulance up to the Emergency Room when she stopped breathing on the school bus, and as I ran after her gurney seeing the paramedics stroking her hair and calling her sweet Charlotte to comfort her and being so sweet to her without even knowing crazy mom was fast approaching. We had many great experiences in the hospital. It was better being home, of course, but the hospital had good things. Good test results, good doctors, good nurses, good visitors, good donuts. And those extremely sweet moments, hearing Charlotte's voice again after a long intubation, all raspy and tired. The doctor saying her heart didn't look any worse than usual. The EEG being normal every time. Holding her again after successful surgery. The misplaced pride I felt every time they said "well...Charlotte doesn't follow the instruction books." Seeing a new doctor shocked when Charlotte reached out to his face and smiled for him. He was expecting her to be much less responsive. She was so defiant!

And of course the most bittersweet of moments, when Charlotte left this world for a better, saying goodbye to her send off party on a blindingly bright Saturday morning in February. It was a good place.
I have been crying a lot more lately.

Today I will bundle up Charlotte's baby sister and we will go pass out the Pennies by the Inch evelopes for Primary Childrens, and then we go visit Charlotte's beautiful headstone. And continue to remember the sweet moments, for we were blessed with so many.

Wednesday, November 04, 2009


It's my birthday. I'm 29. I'm fine with it. We will see if next year hits me differently.
For now, I don't mind getting older.
I have two beautiful daughters, one of whom I'm only getting closer to seeing as I get older, and one of whom I love watching get older along with me.
I have a wonderful husband who got me the wii fit plus but said "I'm not trying to hint at anything with this..."
I'm close to my fantastic hilarious parents and sisters and brother and parents and sisters and brothers in law. It's funny how when you are a teenager you might refer family time as "doing time" and when you are older it's all you want to do. While I was 28 I greeted a new daughter, and said goodbye to my other. I gained a new brother and my other one came home. While I am 29 I think there will be more hellos.
I have friends who have supported me and assisted me through this difficult year with conversation and lunches and little pick me ups. And big pick me ups.
I have my faith. I have my health. I have a cat and a tiny frog. I have a job.
Every year I get closer to finding peace with my body, with my inborn dislike for most foods green and my voracious appetite for cheese and cookies.
Every year I am more and more grateful I became a nurse.
Every year I find some new thing that brings me joy--this year it was the slug ridden, tomato ruled garden. Or as Zar called it, the Useless Harvest. But it made summer more summery.
And I learned to curl my hair with a flat iron. So really I'm approaching perfection.

Sunday, November 01, 2009



Happy Halloween! I'm glad we focused on having a fun Halloween SEASON this year, as the day itself was a bust. I'm so glad we went to Cornbellys twice, and the fabulous Temple View Pumpkin patch twice, and on the ghost tour even though the guide kept referring to the ghosts in question as "Mist-e-vious."
My mother in law suggested Ella be a little lamb this year and wear Cousin Nieve's costume from her first Halloween. I thought that was a great idea and I could be little Bo Peep, but after some investigating it turns out Bo Peep is a currently a popular lingerie theme, and there slim pickings for me costume wise. Kath offered to make me a costume and it was FABULOUS. Luckily I let my sister wear it to work on Friday, so it got some wear, and next year I'll wear it again and be Miss Muffet or something.
Unfortunately I woke up sick on Halloween, and after sleeping all morning and then taking excedrin and caffeine and zip fizz, I started gearing up for a fun afternoon and evening. I thought I had even lucked out and wasn't going to have to work, but my pager went off at 2 pm and I found myself at the hospital for the evening in grubby scrubs and a t-shirt and very curly Bo Peep hair. I missed the ward party and the friend party so after finishing my procedure I went to my moms to wait for Zar to get home from the football game. So...kinda sad.
Luckily as aforementioned, I made sure we had a fab season all together, and now I will not be on call for Thanksgiving OR Christmas...so I guess it was worthwhile.

Wednesday, October 28, 2009


The Seven Year Itch, Hayes Style

At Red Robin, over five dollar burger and apple walnut salad. And steak fries.

Zar: So who is your favorite Disney Character? Oh wait, wait, let me write down my guess so you know I knew who it was. (Writes tiny on a napkin behind his hand)

Me: Uh, okay. Mickey Mouse.

Zar: No.

Ella: Woo!

Me: Cinderella then.

Zar: Wrong. (tosses napkin at Erin)

Me: Robin Hood? You didn't say which Disney character I most would like to make out with.

Zar: (shocked.)

Ella: Ahhhh! Da da da.

Me: Who would yours be? Oh, Belle.

Zar: No, ha.

Me: Jasmine.

Zar: Nope.

Ella: Mmmmmm ba.

Me: Ariel.

Zar: Oh yeah.

Me: Uh, she's a fish.

Zar: Not when she's on land! Oh yeah! Plus, you can't talk, Robin Hood is a fox all the time!

Me: Exactly.

Ella: Woot woot!

Wednesday, October 21, 2009


I've been trying to live for the moment these past few weeks. I get too bummed out when I think too much of the future, even the very immediate future. Like, ah man, I have to work out today, and then I have to shower. What a giant downer. Therefore, you can see how the less immediate future could possibly put me over the edge. A long, exhausting life ahead. Attempting IVF, paying for said IVF, having IVF not work. Deciding whether or not to accept our family is one of four, with one represented by a string of plastic beads in family photos. Even thinking of eventually moving, which I would like to do one day, just exhausts me. And leaving Charlotte's pink bedroom will be hard.
There are plenty of good things, both immediate and future. I love the fall, and I love the holidays. I love Ella and love this stage she is in, cheering over every wave and grin and attempt to stand. I am so excited to watch Ella grow. Buying a pair of darling shoes that won't fit her for two years makes me a little weepy. And Ella's first trip to Disneyland this winter.
And so, for now, I am trying to make lots of little good happy memories, for me and for my family. Repeated visits to the pumpkin patch, multiple dress up occasions, lots of pictures. It's the easiest way to keep myself from purchasing a leopard print Snuggie and never leaving my couch again, simply exhausted over having to wash my hair.
For the record, I am still doing well wading my way through grief. It's bittersweet, but there is sweetness, for me anyway. I love talking about Charlotte, I love laughing over her pictures, I love seeing the cat curled up on her bed in the sun. But I want to be clear about something that has become very clear to me. My grief is easy and light, comparatively. I was given a baby who we were told would never even recognize us. We were told she would--and these words will echo in a dark part of my mind forever--"stare at the ceiling until she dies." And she was so much more than we anticipated. In hard moments, listening to her scream and cry during multiple IV attempts, seeing her so weak she could barely open her eyes, I would bury my head in my arms and sob and Zar would gently remind me "This is so much better than what we signed up for." Which was true. I can rejoice that the hard parts of Charlotte's life have fallen away, leaving only her joy and happiness and delight. And her 'tude.
We knew she would leave us, we knew we had done all we could, we knew we had made her life as happy and healthy as it could have been. And so my grieving is mostly just missing, with no regret, or fear, or guilt. Just sweet remembrance.
But here is what I want to be clear about. I would not be this way, if, heaven forbid, I lost Ella.
Reading the stories of others who have lost their children fill me with dread. I would not have peace. I would not have faith. I would not have my sanity. And that is why, even though I have lost a child, a sweet and beautiful and perfect child, that I can still praise God. I can still work out and wash my hair. (some days) I can still live this life. So don't be overly proud of me. This is a cozy, leopard print Snuggie kind of grief.

Thursday, October 15, 2009



Our latest photo shoot from Katherine Wallin. We love working with Katherine, she is so fun and friendly and does a beautiful job, and it's less expensive than going to Kiddie Kandids! Check her out at www.wallinphotography.blogspot.com. We did these shots for our 7 year anniversary and Ella's first birthday. Ella wore Charlotte beads in most of them.
I am also hard at work on Charlotte's butterfly tree for this years Festival of Trees. I went to the decorators workshop and to Tai Pan and spent waaaay too much money on beautiful gold, green, and brown sparkly ornaments. And...I haven't bought the tree itself yet! Oh well. For Christmas gifts this year we might do a Butterfly Card with a "Your gift was a donation to Primary Childrens Medical Center." Tee hee. It's a special year, and Zar is especially afraid it's going to be a sad one without Charlotte. I think it's our first opportunity to make sure Charlotte stays a part of our family traditions, and doing this tree is a great way to begin that.
Ella has learned her first sign--MORE! She will sign it when I ask her "More cheerios?" and smile big when I clap and cheer for her. ...unfortunately she doesn't seem to quite grasp it's meaning yet...she will sign it then act furious when I offer her another bite of squash. At this point she recognizes the word and knows the sign, but probably just thinks it means "I'm awesome" based on the reaction it gets. We will keep working on that. Next up? MAMA.

Tuesday, October 13, 2009





Three Days of Birthday!
Ella celebrated her 1st birthday this past weekend. It was so fun, but too much cake! As you can see, she got a pony. She also got lots of darling clothes and socks and slippers and books and blankey and a copy of Mary Poppins. Oh yeah, and a tiny frog, Ella's Fella. I think we went a little crazy for her first birthday due to the year we have had. It's hard to believe that one year ago we were introducing fat little Ella to her big sister. How grateful I am that we had four months together before Charlotte left! It's hard to accept that at this point Ella has spent more time without her sister on earth than with her.
Ella's birth is such a miracle for our family and well worth three straight days of celebration (and cake). I can't imagine our lives without her, and how empty our home would be without her. She is truly a gift from Heaven. She is my comfort and joy, my second born, my bright eyed assurance that there is a plan for our family.
Happy Birthday my Ella Bella! Thank you for joining our family just when you did! Thank you for your smiles and giggles and long peaceful nights! Thank you for bringing happiness to our family during such a sad time! Thank you for having blue eyes like sister and otherwise being your own little person. Thank you for waves and kisses and naps.
I love you.

Thursday, October 08, 2009






Fall Photos, my favorite time of year. Ella and I went up Millcreek Canyon this morning and did a little hike (her in a front carrier...so a very little hike) and then I forced her to do a photo shoot. It was so gorgeous!
Above is Ella in a kitty suit with her real kitty Carmen who is so patient with her. Sometimes I just yell "Carmen, run away!" but she generally just goes limp and lets Ella climb all over her. Ella isn't as gentle as Charlotte was, as I'm sure Carmen has noticed.

Wednesday, October 07, 2009

This is my all time favorite picture of Charlotte, I think. It was taken with my cell phone if you can believe that. She had a bad diaper rash and I was having her soak her bum in the sink with some baking soda to sooth it.
I love her hair in this picture, the funny little side burns and the little tufts at her crown. So much fantastic hair! I love her little expression, because I was hooting about how darling she looked and pulling out my phone to snap a picture, and she is looking back like "Oh MOM!" And those eyes! What beautiful eyes she had! They never changed color, I'm sure I've mentioned that before. They stayed that dark newborn baby blue her entire life.
I love that you can see her little belly and even her g-tube button, dear little button that helped her get all chubby and grow that fantastic thick hair. That button was such a blessing to us and to her.
I even love that little blue duck in the picture. I had never noticed it before in this picture until I was bathing Ella in the sink a couple weeks ago and she reached over and pulled it out from behind the dish soap. Minutes later I passed by the microwave where this picture is stuck, and noticed the blue duck in the water. There used to be a pink and a yellow duck too, but only the blue one is left.
I have this picture on my phone. I have it as my desktop on one of my work computers. I have it printed and stuck to the microwave, next to an old Christmas card (the obituary picture), and a picture of Jesus that was stuck to my windshield one night when I came out of Primary Childrens to go home and get some sleep. I bawled and bawled when I saw it; I was feeling so exhausted and forsaken.
This is how I will always remember my Charlotte, of all the thousands of pictures I thankfully took during her life. This morning in bed I was thinking of the pictures I took the day she passed away, the last pictures that camera took, and they all came out blurry and out of focus. Which is fitting, as that is how I remember that day, through the blur of tears and a swollen puffy face. I remembered how she didn't even look like herself to me anymore, like she was already out of her body. Which she might have been. I started getting all tense and sad, and then this picture flashed to my mind, and her silly smile and the time she was sitting in my sisters lap, suddenly made a loud squawking sound (her dinosaur call) and then dove for my sisters arm and bit it hard. And I had to smile, because that was my Charlotte. Not the puffy, pale, very ill little one I held that day, that was not what her life was about. Her life was about happiness, and biting to be funny, and big blue eyes, and little blue ducks.

Sunday, September 27, 2009


Today is our 7 year anniversary and the space bar is notworking well on our laptop. This will be brief.
We have never been big anniversary celebrators...one year we went to Lake Tahoe which was wonderful, and 9 months later we had a baby. Dear Little Charlotte.
Yesterday we had lunch at Rodizio grill and went to the football game. We bought a slice of cake and ate it out of it's plastic box in front of the tv once we got home. It was so romantic.
Seriously though, I love my husband. I think back to our wedding day and it seems like just yesterday, and the three years that went by before Charlotte was born is a blur. What did we do all the time? For years!? Here is what I remember: I had short hair, I was terrified of cooking, and I became a nurse. And we went to Tahoe one fall.
We have been through so much. In our tiny little seven year stretch, we have had two children, and did our best to raise the first to her fullest potential. We collapsed in the hallway and cried together after leaving the doctors office the day of her diagnosis. We were surrounded by angels and light the day she was born. We shivered through a night on the PICU waiting room floor without even a blanket while they worked on her. We have sat in waiting room after waiting room...waiting for news, holding hands, shaking.
And then Ella came with the sweet reassurrance that she was fine, even before we knew she was fine.
And shortly thereafter, the sense that Charlotte was almost finished here.
And then the morning we held eachother in another waiting room, and decided to call our families to come say goodbye to our first born.
Again there were angels that day, and light, and now the slow dimming as we get further and further away from Charlotte's life, that brief brilliant miracle. As our lives fade into normalcy.
Which, is, slower. But delightful, to watch Ella babble and crawl, pull to stand and throw an absolute fit when the drum sticks are taken away. The walks in the beautiful old cemetery, the smiling over Charlotte memories; it really isn't so bad. Most days.
And where will we be in seven more years?
Will we have more children, or a solitary 8 year old daughter? Will we still be in this home, and if not, how can we leave behind Charlotte's pink room?
Will I have short hair again?
It's exhausting to think on it.
So, today, we will walk in the cemetery with our nearly 1 year old, and only think back, on what was and is, and leave the rest for another September day.

Sunday, September 20, 2009


It's been a thoughtful weekend.
On Saturday at 7 am I was leaning against my bed in my scrubs, all ready to go downstairs and leave for work. It was quiet and beautiful, still peaceful and dawnish out, and I was reminded of the morning I woke up early and went out to stand in the front room and look out at the dawn before work, and had the sense that this day was an end and a beginning for me. Hours later the phone call came that told us the baby inside of me would never be normal.
I had my cell phone in my pocket on Saturday, and I pulled it out to check my emails. And I found out that Eva had passed away that morning at home with her mom and dad. Eva was 3 months old and the daughter of a woman who contacted me just days after Charlotte died to say she was in the same situation I had been in, pregnant with a baby diagnosed with an unbalanced translocation unexpected to survive her birth day. Eva did survive and taught her parents and big sister so much. She was so loved.
I know what they are going through, I know what it is like to leave your baby girl in a funeral home and feel like you should stay to take care of her. I know the feeling of wandering the house before bedtime missing your chores, not sure what to do with yourself. I know what it is to comfort yourself by picturing your daughter dancing in heaven with those who have gone before. So I've been thinking of those first days and those last days with Charlotte this weekend, and I've been a little quiet, a little weary and sad.
Tomorrow it will have been seven months, and despite this weekend, this month has been easier than the last. Ella has kept me busy, learning to climb stairs and forever crawling frantically towards open doors and other sources of danger. She also discovered Charlotte's bedroom this week, crawling in from her room and pausing to play with Charlotte's abacus, one of her favorite toys put away after the funeral. She stood at Charlotte's bed and reached for the white winged teddy bear there.
I stepped into the other room and heard Ella squeal, and looked in to see she had managed to turn on Charlotte's princess nightlight by herself, which made her laugh, and nearly made me cry.
They are more rare, but the little Charlotte moments still come.

Thursday, September 10, 2009






Just a few pictures today. Ella went down for her morning nap and I told her while she was sleeping I would work out (Jillian Michaels 30 day shred On Demand) be all dressed and ready and we would leave the house and hit the streets to search out the perfect 1st Birthday Cake as soon as she woke up. Granted, the birthday is still a month away, but here I am still in my work out clothes, still sitting on the couch, and uploading photos after having bought some fall baby clothes online and checking in on my blogs and facebook and babysteals. Ella is awake and has removed her pants. I guess she senses it's going to be a casual day. Maybe having the internet at home isn't such a great idea.

Above is Ella at Newport Beach this summer, where she consumed much sand which kept her bowels moving at a breakneck pace.
Ella and Caro hung out all day on Tuesday and attempted to flatten one another throughout the day, but were dang cute doing it.
This morning I tried to fix Ella's bed head hair with water and a bow, and the result was this glamorous look complete with cheerio beauty mark.

I will go get dressed now, at nearly 1pm, and we will visit at least one cake shop. That's my goal for this entire day, and it will be about all I accomplish, aside from the uploading and checking in and baby clothes shopping. So not a complete waste.

Thursday, September 03, 2009


Ella had her 9 month doctor's appointment today, less than a week shy of her 11th month mark. She is in the 10th percentile for weight (for an 11 month old, not a 9 month old), the 25th for height and the 75% for head. Still petite, but firmly on the charts so I'm happy. She also got a flu shot and her hematocrit is 35%, which is apparently fine for a baby. I forgot to ask about her thumb sucking, so I guess it will have to wait for her 1 year appointment, which will be in December when she is nearly 14 months old.
We got the okay for her to eat whatever, so I have scrambled an egg for her and hid the left over baby carrots in it that she would not eat yesterday. Very sneaky. Ella is more of a tomato and green bean kind of girl.
Football season begins today, and Zar was so excited last night he could barely sleep and popped out of bed at 6:30 without a single groan. He pulled out his lucky Utah golf shirt he wore to every game last year and hasn't worn since the Sugar Bowl. He breathed in it's wrinkly polo-ness and sighed so loudly he woke up Ella. Grrr.
We went and met with a new Reproductive Endocrinologist yesterday. We just were not having good experiences at the University clinic. The new guy was much more encouraging than the old guy and talked about some new "latest and greatest" form of genetic testing that will probably be a little cheaper than we had anticipated. We made a tentative plan to start getting our ducks in a row in December so we can attempt a cylce in February. I'm still not sure how I feel about this, but I know IVF is not really my first choice, and it's not Zar's either, but rather a compromise. We agreed not to discuss it until December and then decide what to do. If we choose to do IVF, we both need to be fully invested and excited about it. That's the rule.
I decorated for Fall yesterday, which does include three large glittery bats, a few glass pumpkins and a light up plastic Jack-O-Lantern. Zar asked me if I am aware of what month it is. I don't care. One month is not enough time when you have cute Halloween decor to display. The way I see it is this--September and October is for Halloween, November and December for Christmas, January and February for Valentines, March and April for Easter, and after that the Decorating Season ends until September. I'm not a big Independence Day Decorator.
Last year I didn't fully get into Halloween due to the whole giving birth through major surgery thing, but on Halloween I pulled out my trusty black maternity dress which I wore for about 82% of my total pregnancy, threw some plastic spiders in my ratted hair and went as...not sure on that one, but something large and black and ratty. My snickers bar above says "Substantialicious" which I definitely was. Oh delightful post baby cushiness.
The next day I was bawling tears of happiness at hearing my first Christmas song on blessed FM 100. Yes I was only three weeks postpartum, but I doubt that had much to do with my excessive emotive joy. Oh Star of Wonder, star of-sniff-Night! I just love Holidays.

Well Ella has decided she is ready for her carrot egg.
GO UTES! WOO!

Monday, August 31, 2009



Awhile back I went through a rough few weeks during which I just couldn't fall asleep at night. Instead I would lay in bed and images from Charlotte's life would flash through my head--not pleasant images. Holding her down while they placed IVs, having her so sick and pale she could barely stay awake, her hair thin and her eyes sad. Seeing her white hand on the blue sheet as the doctors tried-again-to place an arterial line. Her fevers of 105 and above. Those horrible, endless nights trying to force her to leave her C-PAP alone, the hateful mask smashed against her little face forcing air down her lungs all night long.
I would lay there for hours tense and exhausted and so, so sad. So heartbroken. Charlotte had so much more than her fair share of pain.
I went to a psychologist and told her my whole story, and told her I couldn't sleep because all I could think of was Charlotte in pain. I was hoping she'd offer me some blessed ambien, but she didn't. She said "But can't you just see Charlotte watching you and saying 'Oh mom, relax. I'm fine." And that's all it took. I slept better, immediately. Well, that night anyway.

While I was pregnant with Charlotte, Zar and I were primary teachers for a group of 5 year olds. Right after she was diagnosed, we were in Primary and during singing time we learned a song that went, in part "My life is a gift, my life has a plan, my life has a purpose, in heaven it began..." and I would repeat those lines to myself over and over as if Charlotte herself was singing it for me, reminding me that she just wasn't some "accident."
I teach a group of 7 and 8 year olds now. On Sunday we sang that song again, for the first time in more than four years. It came right back to me. Only this time I noticed the end of the song, instead of the beginning. It goes "And I will be happy on earth, and in my home above."
Charlotte was happy on earth. I am so grateful for that. She loved dancing and books and the school bus and dogs and her grandparents and stroller rides and baths. She loved life. And she's still happy. The only difference is there is no more pain. No more needles, or arterial lines, or C-PAP or haircuts. I'm just happy she's happy.

Wednesday, August 26, 2009




Here's a pic of Charlotte shoving her finger into the back of her eye. I almost erased these pictures months ago because it grossed me out and made my eye hurt, but now I'm so glad I have record of this fun little phase she went through.

Sometimes when I'm not sick, I think to myself "I could really use a little cold or something." Not a big illness, and certainly not a nausea type sickness, but just a cold so I can stay home and wear jamies and watch tv and feel justified. And then I get a head cold and remember that it sucks.
I woke up sick on Sunday. Headache, snot, sore throat, general dizziness and weariness. Zar felt fine and delighted in watching Man Vs. Wild all the day long, and I moaned and flopped myself over furniture and finally went upstairs and napped. We went to my moms later and then all went to the cemetery and sat around on the grass by Charlotte's headstone like we were on some foodless picnic. We left flowers from my moms yard and Zar weeded a bit. It was hot and I had a headache.
On Monday I woke up feeling lousy but I was working a late shift and you can't call in sick on late shift unless you are dead because it's just rude. So I took dayquil and went to work, noticing on the way that my fingers were numb and it was kind of hard to focus my eyes.
Whenever I take dayquil I tell myself never to take it again, because it's better to be snotty and weary than confused and tipsy. Then I forget and take it again. The day FLEW by and the very busy night we were supposed to have fell apart and I got to leave early, thank you so much dear co-workers. I went to my mother-in-laws Monday night dinner and stared into space, allowing my family to care for and bathe my daughter. By now Zar was feeling lousy too, and we went home and went to bed early.
Yesterday I felt less achy but I had taken Nyquil the night before and it made me feel hung over. Luckily Ella was feeling lazy too and we both lay on the floor and watched episode after episode of Deadliest Catch and took naps on and off. After a long afternoon snooze I woke up feeling better. Of course I had to drug myself again last night in order to fall asleep after snoozing all day.
Today I have big plans to actually leave the house, maybe clean a little. I have already gotten 30 minutes of exercise and washed my hair, so as you can see I'm on the right path. Now, however, Ella is napping and it looks pretty good. Yes there is a mountain of laundry to fold and a bathroom tub to scour, but I would rather just blog about nothing and be proud of the fact I am fully clothed for the day. One more recovery day won't hurt.

Thursday, August 20, 2009


Yes Amanda I stole this from your blog and immediatly posted it on mine. Photo Credit: Amanda Crosby Cute Baby Credit: Me. (And Zar)

We are online! Hooray!
So look forward to more frequent somewhat depressing ramblings from me. Except not tomorrow, or any time this weekend, or for most of next week, because I'm working. But still more frequent.
Zar is flipping through channels and oohing and awing over the HDedness of ESPN. How very exciting.
Ella ate two tomatoes for dinner, which kind of made me retch. I told my sister I'd rather eat a human head, which is perhaps a little extreme. Before you tell me how fresh and summery garden tomatoes taste, or ask why I planted them if I hate them so, let me explain that I love tomato sauce, and sun dried tomatoes, and especially tomato soup. To me, fresh raw tomatoes taste like very lousy tomato soup and incomplete sauce. And all cold and slimy. Icky. Also I thought two plants would produce maybe five tomatoes, total, and I would add them to a salad and a maybe a kabob of some sort and look like a wife who makes colorful balanced meals. And then not eat them.
Instead of course I have roasted and frozen three cookie sheets full, given 30 or so to coworkers, a few to my mom who disgustingly ate them with mayonnaise right in front of me, let the slugs get a huge number, and added 5 to salads and crock pots of chicken. And fed Ella two. And yet they keep ripening.
I will say I love the way the leaves smell. All fresh and summery.
And now I must go set the DVR to record the next few weeks of "What Not To Wear. "

Monday, August 17, 2009

Happy Blessing Day Baby Elijah!

Zar promises that things are underway to get internet (legally) at home and any moment Comcast will show up at our house to set it up. Hasn't happened yet.

Luckily nothing new is going on. Just mourning. It will have been six months this friday. Sometimes it feels like a lot longer, other times it feels like I just held her yesterday. I've been meaning to to sit down and write down all the little things I think I will remember about her, but probably won't.

For example, she went through a thumb sucking phase which was really a thumb biting phase. She didn't have a very strong suck reflex so she would just jam her thumb in her mouth, bite down on it and hold it there. She had a huge callous on her hand from it. Later, she dropped that and went through a phase where she would stick a finger in her ear, turn her head and stick her other index finger in her opposite ear and repeat. It was so funny and cute. After that, she dropped the ear thing and started sticking her index finger way back behind her eye socket and would attempt to do it to other people. This wasn't so cute. I would grab her finger away and yell "EW!" and she would laugh and try and dig my eye out. What a character she was.

Ella is crawling all over and attempting to jam as much cat food into her mouth as possible when I turn my head. It amazes me how she manages to find the tiniest dangerous invisible thing on the floor and stuff it into her cheek. It's quite incredible.
More to follow, provided we get access one of these days.

Sunday, August 02, 2009

Ella's new favorite food: A handful of wet sand.
Ella's old favorite food: the bottom of a filthy shoe.

I guess that's an improvement.

Tuesday, July 28, 2009




I have come to a frightening realization these past few days. I am not exempt. My family is not immune.


Yes, we have been through a great trial but that doesn't exclude us from further suffering. I almost feel that the enormous blessings we received through having Charlotte just make us more vulnerable. To pain. To sadness and illness. To death.


I don't want to cower here on earth. I don't want to fear God, fear the lessons left for me to learn. Fear more loss. At first I felt that after going through losing Charlotte, I could get through anything. I don't think that anymore.


I see Ella crawling, making her way ever more quickly to an ever widening world of dangers, and I am terrified.


I don't want to be a mom filled with fear, afraid to let my children grow up. My child, rather. Because despite all our efforts, we could remain a family of four, with just three of us huddled together in this dark world.


Or we could have another child, another beautiful, amazing child, with serious medical problems. It could happen again. We are not exempt. Each roll of the dice is independent, is a gamble.




Is this another phase of grief? The strange euphoria, the numbness, the gratitude, the longing, the hope, the sorrow, the fear?


My heart is filled with fear.


I am trying to have faith, I am trying to place my burdens at the feet of my Lord and remember that life isn't all up to chance. I am trying to rely on God and feel Charlotte close. Please Charlotte, hold my heart, and may God write His will upon it.




Monday, July 27, 2009


This is the last picture I took of Charlotte awake and alert. Hours after this picture was taken she made a turn for the worst and never really woke up again. It's pretty amazing though...you can't tell me she isn't seeing something over my head that let her know it was okay to go. That it was time to go, and not to be afraid. I wish I could have seen it too.

Thursday, July 16, 2009


I've been sitting here for over 30 minutes typing paragraphs and then erasing them.


I've typed about all the major life events that have happened in our family in the past few months. I've typed about the first tentative FORWARD crawling Ella did last night, in pursuit of a Phantom of the Opera cassette tape, which materialized out of nowhere. And how this morning I fell asleep ever so breifly on the floor and woke up to find a plant overturned and Ella slapping mud spot next to it. I wrote about a picture of Charlotte that's been on my cell phone for months of her asleep in an oxygen mask, days before she died. She was just exhausted from breathing so fast and her hair looks so dear. And her eye lashes. All snugged up in that blanket, waiting for her ride home. I can't bring myself to erase it, even if it means erasing pictures of my sister's wedding hair I took to show my friends. I wrote about my general mistrust and disgust in the IVF clinic and their lack of organization and apparent idiocy. I wrote about my other sister's IVF cycle, which didn't work out and for some reason plunged me into a self-pitying depression. I wrote about how lucky I was that Charlotte was my first and all my attention and devotion could be poured out onto her and I have no lingering thoughts that I wasn't there for her enough, or I wasn't there for my other kids enough. It was all her. I wrote that February and July are pretty much my least favorite months. August is probably just as bad but at least I can tell myself the State Fair will be here in a few weeks in August. I live for the Fair. I wrote about my brother sitting in the other room listening to various acoustic covers to every popular song released over the past two years that he more or less missed. I wrote that we were assigned our Festival of Trees space, and received our first box of butterfly ornaments. The space is O2, which pleased me. Charlotte's o2 represented, to me, all her limitations in this life, and her tree in space O2 will represent the miracle of her life. Oxygen or not. I wrote about day four of the South Beach Diet. (I don't condone this diet except for emergencies like an upcoming wedding and a size 8 petite bridesmaid dress.)


And yet I feel like I have nothing to say.




Sunday, July 05, 2009


I've known our latest swim team test results for about a week now but with Charlotte's birthday and everything I haven't felt like divulging them yet. The results were quite surprising. I'm not sure how I feel about them.

On average, a man with a balanced translocation produces 82% affected swim team members. Zar, on the other hand, produces only 51% affected. That along with the 8% otherwise affected swimmers, means that 41% of Zar's swimmers are normal, which is actually quite high for people in our situation.

I really expected that the results would show that only 10% or so were normal, and the doctor would advise us to not attempt IVF, and the decision would be made for us. This is why I went ahead with the $2000 test, as I thought it would put an end to this IVF mumbo jumbo. Not so. There is an extremely good chance that if we attempt IVF we will get at least a few good healthy embryos.

At the same time, my sister is in the middle of her 2 week wait on her IVF cycle. On the day of her transfer, (Charlotte's Birthday) she went to the hospital by ambulance in horrible pain and they almost did not do the transfer. She had another attack that afternoon and it was like watching the first half of "A Baby Story" live, one of those ones with a midwife and no epidural. Quite frightening, especially for someone like myself who has only given birth neatly and quietly through a large abdominal surgical opening.

Anyway since then I've had the pleasure of giving her one of her nightly injections of what appeared to be honey, and hearing her complain that already none of her clothes fit.

I can only imagine that someone who gained 55 lbs with her last pregnancy (such as myself) would start to swell long before the first injection.

Anyway, none of this matters, of course, if it results in a healthy child. I am so worried about her cycle not working out that I tend to assume she is already pregnant.

So there's the latest on the reproductive front. When Zar got our news, he said "We're gonna do this." I will probably call the clinic tomorrow and find out what the next step is for us, and how big the next check needs to be to take that next step.

Friday, July 03, 2009




On Tuesday night I was laying on Charlotte's bed by the light of her princess nightlight. Her bed has a pink and blue quilt on it, the one the hospital gave us to wrap her in just before she passed away. I'm glad to have it. Incidentally, when she died she was wearing a diaper and a pair of lavender Mickey Mouse socks. That's it. I have those too. The funeral home saved them for us. We buried her in a cream silk dress her grandmother Hayes picked out, a necklace from her grandfather, lace trimmed socks and a tiny white pair of daisy undies. (No more diapers for Charlotte.) So very sweet. We buried her with her favorite toy, a peach colored monkey with a well worn green crinkle ear she loved to chew on. We buried her with a pink incredibly soft blanket, the kind you would never actually let your toddler drag around, because it was too soft, and too pale, and well, it cost $80. But Grandma Enslin wanted her to have it. We buried her in a white casket, with those cheesy daisies carved on the lid, but now that I think about it, they matched her undies.


When we buried her I whispered "Charlotte, hold my heart!"


On Tuesday night it was Charlotte's birthday, and she got her headstone. When we buried her I thought we would have her headstone in place within weeks. It took months, but it was worth it. It is beautiful. I chose the butterfly for various reasons, discussed in depth here.


I am so happy it is done. I am relieved. It feels wonderful to walk up to her little spot on the hill and have something more to mark it other than lines in the grass. It is perfect.


But...


The night it was placed, a weight was lifted from my heart, but there was emptiness too. I felt, for a moment, I had done the last thing I could do for my Charlotte.


And so begins the next project.


I am going to do a tree for her for the Festival of Trees. If you don't know, the Festival is a yearly fund raiser in early December for Primary Children's Medical Center, where Charlotte received all her health care. Where Charlotte was treated, cared for, saved time and time again, and finally, where she died. Christmas trees are decorated and donated to the festival and then auctioned off. This year, Charlotte will have a butterfly tree. I've just exchanged my first little butterfly in return for a donation to Charlotte's Butterfly Fund.
Even though she's flown away, she's always here, holding my heart.




Tuesday, June 30, 2009


Dear Charlotte,

Four years ago today you came into the world and it has never been the same. The day you were born was the best day of my life, after about 4 pm anyway. You were so wide-eyed right from the start. So smug and knowing too.

You had lots of dark hair and little chubby hands and dark blue eyes which never changed color. You weighed six pounds and five ounces, absolutely huge! That is, until 8 pound 4 oz Ella came along...

You brought your whole family together that day. You continued to bring your family closer in the following months and years. Thank you for that.

Thank you for breathing that day, four years ago, thank you for drinking from a bottle like a champ, thank you for laying in my arms all night that first night and looking back at me.

I love you, my tiny first born, my miracle, my beautiful all-knowing old-souled daughter. You changed me forever and all for the better.

I miss you.

Happy Birthday.

Love, Mom