I came across this post by another mom of a kiddo with CP whose blog I read somewhat regularly. She asks herself how her life would be different if her daughter didn't have CP. I think of this all the time as well, especially when I'm out with Hannah in a place where there are lots of other kids/parents. Our life is so different than the average family with typically developing kids, in ways that so many people don't realize. In lots of respects, we're like everyone else, trying to figure out what to make for dinner, paying the bills, thinking of fun things to do as a family. But layered over this are the doctor's appointments, therapies to do at home, therapies to do in the community, research into new treatments, equipment to look into buying, adaptations to make around the house...as well as the constant attention out in public, the physical effort to get around in the community, and the mental/emotional effort it takes to stay positive and hopeful and focused on manageable, achievable goals for our kids.
I would give almost anything to wake up one day and for Hannah's CP to be cured. I can see some of the silver linings that have come out of this experience of raising a child with a disability, but I would much rather have learned these lessons an easier way. Despite this, we (and she) have managed to have a pretty good life.
But it IS a different life. And it is hard work.
2 comments:
I am having a tough day today, wishing my kiddos never had to cope with prematurity, CP, PDD, and all of their delays and special needs. Your post, as always, was eloquent and said exactly what I am feeling. There is so much about our lives that is normal (ugh....paying bills and cleaning!) and so much that is just like everyone else. We also have so many blessings that I make sure to recognize daily...but it IS different and it IS hard. Thanks for giving me permission to say so today.
It can be so tiring but it is so worth it. On a bad day it does leave me despising those who complain about their 'normal' children.
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