At your feet I lay her down.
Humbly before you I bow.
She’s the blessing, you’ve given to me.
Father of Light!

Beautiful by Plankeye

It’s 2:20 AM according to my computer clock, and I can’t sleep. My chest has ached for several days now, and I’m not being poetic. It’s stress-related, and bad enough to wake me up. Just knowing logically that something you  worry about is causing a physical pain is not enough to stop the pain. It’s a fascinating physiological reaction,  but one I dislike in the middle of the night. So I thought I’d write out my worries.

I was reading about osteoporosis the other day. Something Laelia will have. Something she takes vitamins for now. I read that it’s worse when you don’t use your legs very much for weight bearing. And then later when you do use them, if you can use them,  the bones can break from weakness caused by disuse.

I was hearing about arthritis. Lali’s geneticist said this was coming in her 20′s.

I finished reading Jodi Picoult’s book,  Handle With Care, a book about the life of a family living with a little girl with a disability (OI). I’m convinced this talented writer hates her readers. :) I identified with the mother so much for the first 60 pages; I even wondered if this was a true story. Then I watched helplessly as the mother destroys every life around her for the next 340 or so pages until, well I won’t give away the ending, but it sucked. For some reason it stressed me out and now I worry about what Laelia’s life will be like.

I worry about having another baby. We’ve decided to wait indefinitely. There’s just too much to worry about with Laelia, including picking her up since she’s largely immobile. A pregnant woman can’t lift so much weight or bend over quite so easily. So that’s out of the question. I mean there are other financial, emotional and even spiritual factors that may be greater, but either way I worry about Laelia growing up lonely. And after reading Handle With Care and one other  somewhat whiny book about the experiences of siblings of disabled kids, I worry about what kind of life we’d be bringing another child into.

Laelia asked for a baby today, which is the only reason I even bring it up. When we said our prayers she thanked God for “buildings and turtles and purple” and said, “please for to give baby… and Panzer!” (Panzer is the name of Grandpa’s dog, but also a name she gives every dog.) She wants what she wants. She seemed just as happy to get her plastic baby when she got home and rock it to sleep.

We had Laelia’s IEP meeting not too long ago. We asked how stretches could be included. Short story: they can’t–they don’t seem to be medical enough or educational enough. Stretching her fingers allows her to continue to grasp a pencil or paint brush, her wrist stretches  allow her to type, elbow stretches allow her to continue to reach her mouth to feed herself lunch, supination allows her to position her arms to catch a ball; these are  all things they do in school. Stretching is the ONLY real remedy for arthrogryposis. It’s the only thing that a non-medical person can do for her. It’s the only thing that makes me feel like I have any control over this condition.  Of course there’s  also surgeries, serial casting, and  splinting, but stretching creates the gains we’ve made, makes some  surgeries unnecessary and does what static splinting cannot. In my horrified thinking, to deny her stretches throughout the day, for eight hours of school a day (beginning when she turns three), is tantamount to neglect. I had a  nightmare where after neglecting her stretches for eight hours in the middle of the day, she became so stiff she  was  unable to hold a pencil in a month’s time. This would have been true of baby Laelia, but little girl Laelia moved around more and the results shouldn’t be as severe. I contacted an advocacy group. I was told by three different people to get a lawyer. I was told how to appeal, go through mediation and then go before a judge.  

The thing is, it’s hard for me to see another side to this. I can understand the school not wanting to do the stretches, I can even understand them viewing it as a liability, but I don’t think we’d lose if we took this to court. IEPs can end up in court; it happens. But I’m trying to find a compromise. And to that end,  add to  the the list of stressors finding a possible volunteer to drive to her school near National City to do 15 minutes worth of stretches five days a week if her IEP doesn’t work out the way it should.

Chest pain. It’s on my list of worries.

We went to OT and PT today. During PT we met with a wheelchair guy. His name was Chris, but I can’t tell you his official title because I can’t find his card at two in the morning. We tried a power wheelchair with Laelia for the first time earlier today. She did perfectly! She caught on faster than most, says Chris. He watched months of training go by in ten minutes as she learned to stop and turn and navigate. And she wasn’t scared. She finally could do what everyone else took for granted! Her joy was distracting enough for me at first, but now we need to get our insurance on board to get her one. Our insurance wants to drag their feet for at least three months. It’s going to be a battle.

I swear if Laelia did not have so much independence for the first time in her little life I would not even be thinking of a chair! Not because I don’t think she needs one or that it’s not wonderful, but hearing the logistics of owning one stressed me out. We don’t have a van, so we could consider buying a trailer and putting it behind my car. I don’t think I’d fit into regular spaces after that. The thing also weighs a ton (~200 lbs) and can’t be lifted. Great.

We also have to move. It’s because we are in apartment #8. Apartment #1 is at the top of the hill. Then you go down a flight of stairs to get to #2. Another flight of stairs for #3 and #4. Another flights of stairs to #5. Etc. Etc.  Our apartment  has  a long  living room and small kitchen downstairs, then up one narrow flight of stairs you have the rest. A ~200 lb power chair cannot be lifted easily. In fact you really need special equipment to lift it. It won’t work here. I knew this place wouldn’t work forever, but it would have been nice to wait a couple years until we could afford better.

Our wonderful next door neighbors moved out last weekend. To Colorado.

I called Shriner’s to make an appointment for Laelia’s surgery. The doctor’s nurse was on vacation and will be back Monday. We’ll probably come up with a date on Monday. Then I’ll finally know when this surgery will be. And I wonder if it will make things easier, or fill me with dread.

We’re flying to Idaho tomorrow and I’m not packed. I also work a full day tomorrow. Our flight takes off two hours after my shift ends.

The toilet clogged.

Laelia’s doctor died. It’s not new news. We saw a new doctor, one from his office, yesterday. Everything is new again. Dr. Schwartz was coordinating Laelia’s care. We also trusted him. Not that we can’t trust a new doctor, but it’s an added stress. Got this email from my husband before our appointment:  

-Update all specialists who need to know of the PCP change–Mubarak/Wallace’s office, OT/PT office……anyone else? Does anyone at the school need to know? How about Shriner’s?
-When you make an appointment, Aetna may have to call you and ask you questions about the change.
-When you make an appointment, make sure you let them know that you want Laelia’s medical records accessible to Edwards–it’s all in the same building, so maybe you don’t have to do this, but better safe than sorry.
-Accept that a good chunk of your appointment is going to be about bringing Dr. Edwards up to speed on all the therapy that Dr. Schwartz had authorized for Laelie.

Yay. :-/

We actually saw Dr. Chen (same office as Edwards and Schwartz) because we needed to be seen right away. Laelia has a chalazion (stye) that we needed medicine for. She also got a TB test and some paperwork filled out for school. We waited two hours to see the doctor. The best thing about seeing doctors in the same office is that you can always see a backup  when yours is busy or on vacation or sick. Worst thing about seeing these doctors is that they’re so darn popular  the wait time is extra long. Laelia and I used the time to give each other practice TB shots and explain exactly what happens. Laelia even picked the arm she wanted it in.  Afterwards we gave Pooh Bear a shot  and band aid too. :) But what I forgot was that you have to come back and get the sight looked at! Acc!  I told them we were flying out of town tomorrow! They’ll try to see us Friday morning. It’s just stressful!

Earthquakes. We experienced an earthquake before we left for the doctor’s office that shook us pretty hard. It was over quickly, but I never know when it’s going to be the “big one.” So since I was on the floor with Lali and felt it come a bit slowly at first, I quickly explained to her what was going to happen. Then when I heard the crack and the room started shaking harder I was able to say, “See, Laelia, an earthquake.” I was terrified, but Laelia was thrilled. When it was over she shouted, “Again!” :) This is the third earthquake that we have had since Easter Sunday. I’ve been having nightmares about earthquakes lately. In my dreams we’re upstairs in our bedrooms when it happens and unable to get to Laelia across the hall.    

I’m tired.

Okay so that’s my outpour of worry. The random things. It’s not all bad. In fact I had a good  talk with my OT this afernoon  about what to do about  Laelia’s IEP.  Jill (our OT)  is going to measure all of Laelia’s joints then watch them like a hawk next year. We’re trying to figure out ways around traditional stretching through that eight hour period too. Then we’ll incorporate stretching into our Mommy/Baby time (which I hate, but we’ll do what we need to do) and while waiting for the school bus for that ten minutes in the morning at the top of our hill (close to apartment #1). I felt a little better after talking to her.  

I also had a good time  doing   a Ruth study with girlfriends. We talked about “weeping forward” and how we see strong women push forward in life despite it all, but half blind with tears in their eyes and arms outstretched to keep from running into something. Hey, whatever works.

Okay. So tired. Bathroom then prayer then bed.

Toilet’s  clogged. Ugh.    

3 Responses to “Worry”

  1. Robin Clark says:

    Does Laelia qualify for CCS? I know that they will provide a wheel chair. Wow–there is so much on your plate right now. I hope that when you are in Idaho you can put it all out of your mind and have a great time.

  2. Laura says:

    Hey there :) I know you are scared, any sane person would be. But trust me when I say it will all work out. I’m in a wheelchair. I don’t exactly have osteoperosis, but I might as well for how weak and thin my bones are. And anyone gets broken bones, that’s completely normal. She may break something once and decide on her own that she needs to be careful because she doesn’t like having a broken arm or leg. I know I did. I know it’s got to be so hard to let her learn as much as she can on her own, but it’s so immensely worth it. It may not be much comfort, but I survived quite well without doing many stretches beyond maybe 8 or 10 years old. Maybe instead of trying to find someone to do the stretches with her, maybe you can teach her to do them for herself while she sits and listens to the teacher. You never know :) As for those whiny novels that keep finding their way to your stack of books to read, that’s all they are. Books. Not your living breathing Laelia :) So don’t pay any attention to their sour endings. They mean nothing. Not to mention the fact that things rarely, if ever, happen in real life the same way they do in books. Real life often turns out far better than the bad endings in books :) What does the author know about having a child with a disability anyways? Statistics? Since when did those stop people from living their lives? Hope you Idaho trip is really fun and relaxing!

  3. Laura says:

    PS – I didn’t realize how wierd looking those smiley faces turn out. Oops!!!!!

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