You really want to know?: some "truths" from a mother raising a child with a disability

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 dependant 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.

Sounds bitter and even cynical. but another truth is, I am tired, and stressed, and running out of ideas and...and...and the list goes on...

But what do I want instead? That question can't be answered, because there is no alternative -- AND THAT'S O.K. because truthfully, my family has benefited immensely from living in a house where statements like "Is that poop on the wall"?, "Who left the food unlocked"?, and "You may not eat toilet paper", are just typical statements. Where every door is chained, including the food cupboard and refrigerator, with grave consequences for leaving any of them unlocked. Where practically any object small enough to fit into a mouth is banned. Where any paper you value enough to not have destroyed will be put over the height of five feet. Any idea of leaving the house must meet though standards as to the feasibility of taking our child with the disability. How has this made us better people? We are better people because we have learned to be so much more appreciative of what we us to take for granted.

Yes, we often feel "not normal" and different, and even a bit weird at times. But the truth is our child with a disability has contributed to our 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 encountered 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.

Terry Schneider -- mom to Mandy 12.10 (del+) & 3 others Bruce's wife too
Union Grove, WI

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