Raising a child with a disability is taxing on every facet of life. I have missed out on many of my dreams. That's the hard truth. The even harder truth is that this very needy and dependent child has turned me into a better person more than the fulfillment of any of those dreams would have made me. Please, though, realize that although raising a child with a disability has been a million-dollar experience, this does not mean I would pay even two cents to do it given the choice for my child's disability to disappear. That being said, let me give you some more "truths:"
*** You say you "give me a lot of credit". For what? I didn't pick myself to be the parent of child with a disability -- God did -- give him the credit for seeing in me what I did not. Honestly, I spend a lot of time feeling lost and unsure of how to best care for my child. Give me ideas, not "credit". When you say "I give you a lot of credit". I hear, "Glad it's you and not me".
*** You say I "have so much patience". Do you realize that at the moment you are saying that, I may be silently screaming inside, feeling manic and out of control? Do you really think I am going to convey that feeling? If it seems over-whelming to you, it's probably over-whelming to me too.
*** You say "I don't know how you do it". As if I had a choice. I "do it" because what's the alternative? I don't have the choice not to do it. Given the choice, I would choose for my child not to have a disability.
*** You say "I'd like to help, but I'm not sure if there's anything I can do". Just ask, I'll give you a list of things I'm sure you could help with -- and I'm beyond having too much pride to refuse your offer.
Yes, we often feel "not normal" and different, and even a bit weird at times. But the truth is my child with a disability has contributed to my family more than any of us to who we are, and how we function. We have grown in many ways thanks to this child. Thorough the difficulties and unfamiliar territories we have encountered and will encounter while raising this child. We have become more than we ever would have without this child.. We have learned to be advocates, innovators and "mini experts" in at least a half dozen professional fields. We have learned to be more assertive and articulate. We are also more humble. We are more careful before we assume. We are more accepting. We certainly have become more meticulate. We have also learned that a sense of humor is a great coping mechanism. So, even though many times we have longed for the choice to be a "normal" family, in many ways it's a good thing we don't have that choice --- because we have become so much more....
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