It amazes me just how often perfect strangers feel the need to stop and say to me "I just don't know how you do it." Really? You know nothing about me and you felt the need to stop and say this to me? I am just so tired of that one liner. For, each time it comes out of their mouth, I really hear them saying - It must be so hard to raise a child with disabilities and I sure am glad it's not me in your shoes!
And, for all the times I've heard this statement, I'm still not sure how to respond. I love my life. I think my daughters are great. If I say this most people just can't accept this response. Truth be told, I'm not sure if I would have accepted it, either, before disability touched my life. Are there things I would like to change about my life? Sure. Wouldn't we all love to change something?
I had a conversation with one of Emma's therapists a while back about multiply disabled children in our society. How most care is left up to the parents and our society has a lack of supports built in for the families. Often the thing that causes the parents the most stress is worry about what will happen to their child when they can no longer care for her.
Since we live near a large group of Amish, she contrasted how we behave to how the Amish pull together and fully support each other. How you know that the severely disabled in the Amish community will always be well cared for by their community. How it's not necessary to worry about what will happen to the child when the parents are no longer able to care for her.
I like to believe in a future where our society pulls together and supports disabled people and the families that love them. That having a disability is not that differentiating of a factor in our quality of life. That we are no longer worried about such things as health care coverage for our children with "chronic" or "pre-existing" conditions.
I am a hopeful parent and I believe in a future where we are no longer singled out by people and told "I don't know how you do it," because we are doing it together. Won't you join me?
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