This is our last week in Mesa and between trying to pack up our house by myself, attend Eli's last week of preschool activities, I'm cramming in as many doctors appointments and therapy visits for Isabelle as I possibly can. We met with the orthopedic doctor this week and Isabelle will need to get leg braces to stabilize her footing. She has hypotonia, which is basically low muscle tone and as a result she bends in ways that she really shouldn't and that most peoples bodies would naturally resist. That makes it hard for her to get her footing and support her weight when she wants to stand - not that she's standing yet. So she'll get special braces that go around her feet and up her calf. As she gets older, they will get shorter and eventually end at either her ankles or just be special shoes.
It was just one more discouraging thing to hear in a busy, stressful week and I left the appointment feeling sad. Sometimes it's hard not to look around and the kids of my friends and family and just want to cry. I see babies the same age as Isabelle running, putting words together, doing so many things that seem so far in the future for us. I miss having milestones just happen on their own, not having them happen months later than they should, after hours and hours of therapy. Sometimes its just hard and all I want is a shoulder to cry on or an ear to listen. Which is why I sometimes feel annoyed and frustrated when I share a worry or problem about Isabelle and I have to listen to: "It could be worse", or "my friend's kid had that happen and it's no big deal. Happens to everyone". Because I know it could be worse. I spend every week in and out of therapy offices and doctors offices and the children's hospital. I see worse all the time. And it doesn't happen to everyone. It is a big deal and its hard. I constantly have to readjust my dreams for Isabelle's future and try not to get my hopes up. I constantly have the doctors "worst case scenario" in my head, always making me wonder what will be possible for my daughter. I envy friends and family who have healthy children and the whole world seems possible for them. I remember when it was just Eli and my big worry was ear infections or the flu. Now it's checking for sores that appear from the leg braces, the cost of orthodics for the rest of her life and the fact that having these bulky braces on her legs will make it even harder to crawl - which she isn't really doing yet - on top of all the other worries that were already there. Worrying about just the flu or a cold seems like a gift these days. I don't know what will be possible for Isabelle, I have no idea what her future will be like and sometimes, when we hit another set back, no matter how small it may appear, it just feels hard. And I don't want to hear "it could be worse." Sometimes all you really want is just want someone to listen and tell you, "it will be OK".
So we're getting leg braces and today, it's just hard.
3 comments:
Oh friend I am so sorry. This is hard, and it is sad and you have every right to feel any emotion that might come along with the package right now. I think it's hard to know what to say about these things. People want to help and inadvertantly hurt instead. I hope you do know that you are loved, thought of, and cared about. Isabelle was sent to you because Heavenly Father knew that you would love her and marvel at her and find every joy she had to give - no matter when or how they came. Go ahead and give yourself time with these setbacks, it's okay to cry, it's okay to deal with it rather than push it under the rug. Love you!!!
You are amazing.
That's all I have to say. But, thanks for being so honest and so brave.
Heids, I'm so sorry. That is so hard...I can't imagine what you go through with each new thing you hear that Izzy needs or problem she has or the next thing the doctors are worried about for her. It must break your heart. We love you and keep you in our thoughts and prayers.
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