Thursday, March 24, 2011
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.
Wednesday, March 23, 2011
Tuesday, March 22, 2011
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.
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.
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.
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.
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.
Wednesday, March 16, 2011
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.
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.
Tuesday, March 15, 2011
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.
Thursday, March 10, 2011
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.
Tuesday, March 08, 2011
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.
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.
Thursday, March 03, 2011
Tuesday, March 01, 2011
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.
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?
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.