Tired of Hurting Her

I’m old, Gandalf. I know I don’t look it, but I’m beginning to feel it in my heart. I feel… thin. Sort of stretched, like… butter scraped over too much bread. I need a holiday. A very long holiday.                          ~Bilbo Baggins

Pain reduces my little  girl into a ball of infant-like need. She loses her language skills, her manners and her ability to function. Laelia is in a lot of pain. I cause the pain. I think right now we both don’t like me.

Laelia’s doctor gave it to me straight. He laid out what therapy Laelia would absolutely require and how often to do it. I realized, as I immediately  started sobbing in front of him,  that what she needs is much more than  I’m providing now.  Constant care. Wow.  So I went home with a heavy heart as I tried to figure out how to make this work. Right now I’m only working half days at my job. And I’ve already met with my boss to try to  figure out what to do. Charley and I talked about me giving my two weeks notice, but instead we’re trying to work something else out with my work so we can still afford to move. It’s all still up in the air.  

Laelia needs so much. She needs stretching and massaging and all sorts of torture. Her AFOs are so painful. She screams when I take them off or cinch them up or look at them. She screams and cries most of the time I’m with her.

We don’t even put her shoes on correctly while she’s at school because she’d be in pain the whole day. And if it’s too hard on the school, God knows they’ll make it harder on our family.  I talked with a school admin on Monday who was unhappy Laelia still needed her wheelchair. This person really thought Laelia would be  walking after surgery and seemed  very put out. She mentioned it already takes  a long time  for Laelia to feed herself and get around as it is!  Ten bucks says this person doesn’t know the name of Laelia’s condition. Twenty bucks says  this person  has no idea how it feels to have a cast off and your atrophied limb stretched.  The admin  said, “Now  do you really want your daughter in a wheelchair for four hours?!” I wanted to say, “NO I WANT HER RUNNING AROUND!! OBVIOUSLY!”   I just calmly explained AGAIN what Laelia’s condition was and what her prognosis was. I’ve repeated myself so many times, I don’t know how I’m unclear! Bottom line: all her doctors, except for the one very special guy we travel 3000 miles to see,  tell me  she  will never  walk. Uggggggggggh!! I think this school admin person sometimes singles us out because a disability  is hard for them. During that same conversation with the same admin, they actually said, “Just tell me what you expect from us? What do you want us to do for you?” I hadn’t asked for anything at this point; besides asking where to  leave her wheelchair. Now would that person have ever asked that question of ANY other typical  students’ moms in that school? The answer is no.

I’m exhausted. I keep telling myself that the worst of the pain is behind us and the rest is  temporary. She’s reacting so badly to foot stretches that we’re considering taking her in for an x-ray to see if anything is broken. Just for peace of mind.

We’re not sleeping. Laelia wakes up several times in pain.

I’m a mess physically. I’ve been to  three different  doctors who can’t figure out why I’m dizzy or why I get vertigo. Laelia screamed for  twenty-eight minutes straight while we waited for  one doctor today. The receptionist was just putting phone calls straight on hold since she couldn’t hear over the cries. I couldn’t get Lali to calm down and I tried everything.  The doctor didn’t even  find the cause of  my vertigo and we went home feeling worse than when we went.

I’ve been crying for four days straight: at the doctors’ offices (both hers and mine), the grocery store, at work, while driving…

And if we didn’t need to deal with everything else, I’ve also  been trying to call my new  insurance who doesn’t know who I am, Children’s Hospital’s developmental services who doesn’t like that our insurance changed and won’t let us see our therapists for weeks, California Children’s Services who demand official doctors’ notes to prove she has AMC before processing our request (and if we do get them they won’t allow us to see our OT hand specialist anymore), Shriners Hospital in Los Angeles who we need to work out how to bus us to them, etc, etc, etc,  but  no one can get Laelia the PT she needs NOW. Shriners is the closest to providing it, but  that would mean being gone six hours a day, two days a week. Not ideal. And her doctor said if I can’t get her professional PT two times a week to call and write my local congress people and senators.  *cry*

Surgery without PT is like getting braces on your teeth and then once they’re off,  not wearing your retainer because no one will give you a freakin’ retainer for WEEKS and then your teeth go back to being a mess.  Stupid, right? Oh and no one will just work with us or make this easier because it would inconvenience them. For example, please no one take my word that Laelia has arthrogryposis. We just  like to give her surgeries for fun. Just assume we’re lying and demand multiple official copies of doctors’ notes from doctors who don’t return my calls.  Ugh! What? LOOKING at her isn’t good enough?

Okay I’ll stop being so sarcastic and angry. I’m just so  tired. I’m doing all this for the long term results. This is ALL temporary. Someday life will feel normal again, like it did before when we got on top of all her treatments, doctors and  therapies the first time. *deep breath* Sorry, I’m better now. :)

3 Responses to “Tired of Hurting Her”

  1. Randi Legates says:

    Venting is good Alexis. I’m so sorry things are so hard for you a Lali right now. We will be praying for you.

  2. Robin Clark says:

    Me too. Right now I’m thinking over who I might know (even though I’m in NorCal) who knows someone who knows someone.

    This really calls for prayer and you, Charlie and Laelia will get lots from Foothills United Methodist in Rescue and every other church that my friends attend.

    If I was a shepherd, I would bring a lamb.

  3. Tessa says:

    For the socks you are wanting i would say your best bet would be ebay.com or go by a pharmacy and have them ordered for you if they don’t have them already.

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