What have we done?

Like many parents of adult children living with disabilities my husband and I lose a lot of sleep worrying about what will happen to our child if we were killed in a car crash. Truthfully, I probably toss and turn more at night than my husband. His ubiquitious snoring proves that fact. And it isn’t a pleasant thought – thinking about my son’s life if I were dead. But, as a mother of a child with complex disabilities I know that I need to think about what might happen if a crisis hit and I were unable to manage my son’s care. All too often, when bad things happen to their parents and primary caregivers, adults with disabilities end up in living arrangements their parents wouldn’t want. Honestly they end up living in places none of us would want.

My husband and I have always known we couldn’t sustain Matthew’s care forever. As a result, we have spent the last two years exploring a shared care model with a group home. The people there were great, but we knew it wasn’t what we wanted. A few months ago I was sitting with a friend drinking coffee in my kitchen and shared that in a perfect world our kids could live together in a house around the corner.

I am not making this up. I swear. Three days later a wheelchair friendly bungalow AROUND THE CORNER was listed for sale. It needs work to make it suitable for Matthew and his friend. But it has great potential. So my husband and I bought it. The last two months have been a whirlwind and had I stopped to think through all the barriers and challenges we would be facing I would have easily talked myself out of the purchase.

We honestly don’t know what we’re doing. Only that we want to create something wonderful for our son. Something that could exist even if I were hit by the proverbial Mack truck tomorrow. Families often talk about doing something like this for their adult children with disabilities, but there remain few parent-run, community-based homes for adults with disabilities. I can’t decide if I am terrified, foolish, or privileged to be part of something exciting and new. Hang around and find out.

Published by extremecaregivingblog

Wife, mother, extreme caregiver, friend, knitter, soccer player.

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