Sunday, February 15, 2009

As ok as I am with that...I'm not ok with this....

Why do I struggle with the medical treatment Hope needs? From braces to therapies, I feel like when faced with each new development, I want to grab her and run and hide. I want to yell at all the doctors that her CP isn't THAT bad, what are they doing? Don't they see that she can walk JUST FINE? That her eye is really NOT that bad? Ugh. I mean, I feel like I'm wasting their time even taking her. Then it's all thrown back in my face. Your daughter has Cerebal Palsy. Your daughter needs a brace. Your daughter needs glasses. Your daughter may require surgery when she is older. blah blah blah blah. It makes my head spin and my heart ache. I wonder why it bothers me so much. I mean I was prepared for far worse than this! I was anticipating ventilators, wheelchairs, etc. That was the original prognosis and what we were told to anticipate. So I did! But I ended up with a child who seemed SO average. You can't even see the disability if you aren't looking for it.

So. Yesterday Hope had an appointment at Shriner's in Philadelphia. I couldn't go, obviously, because travelling more than 5 minutes just isn't high on my list these days. I really wanted to go, but I knew my husband AND Hope's Birthmom were fully capable of going and getting all the necessary information. Two of my older children went, as well.

I was relieved to get the update that Hope no longer needed to wear her leg brace. That was comforting to me. But I was then shocked to hear that she now needs to wear two braces at night on her little legs. :-( I am heartbroken. They look monsterous on her little legs. I couldn't bear to look at first...but then I peeked under the blanket and the tears welled up in my eyes. The part that makes me the most sad? These braces are just to "DELAY" the need for surgery. Sure, it's a pretty common surgery for CP kids and it's easy to do, easy to recover, so on and so forth, but the bottom line is, at some point during her childhood, she is going to require this surgery. Once again, her diagnosis is real to me. It's more than just a slight limp and a mild lazy eye. It's more than therapies 4 times a week. It's real. My child has cerebal palsy and there isn't a damn thing I can do to make it better for her.
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