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  • Posted September 10, 2018

“I Can’t Die”

Watching season 2 of Ozark, and the lead character said these three words, and it resonated with me because sometimes it has felt like a never-ending chant in my head. Maybe other parents feel similarly, especially those of you whose child has a disability.

Having lost my wife, I was hit full frontal with what would happen when I’m gone – at the time I didn’t have much of a support network at all and my son was completely dependent. Over the last six years I’ve gone outside my comfort zone and I’ve added a few people I trust and believe will help him; and, more importantly, he’s learned (and continues to learn) skills enabling him to become more self-sufficient. Unfortunately, given current technology, I don’t believe he’s capable of living on his own – yet. But as rapidly as technology is advancing I have faith it will be there in his lifetime.

Part of being a parent is not wanting to outlive your child, part of being a parent of a child with a disability is adding the fear of your child outliving you. Too many of us retreat into our own little worlds, believing (rightly or wrongly) no-one else would understand, or there’s nothing anyone can do.

I’m about as jaded as they come, but I KNOW I cannot be the only resource my son has. The reality is I will likely die many years before he does, and I want him to have the best quality of life possible. I think this is what we all want; and we need to ask ourselves are we providing this if we keep them at home with us instead of looking for Residential solutions, or do things for them because they “can’t” or it’s just “easier”.

I hear, and echo, the fear many have about death and leaving our child(ren) alone in this world. We don’t have much control over when our time is up, but we have absolute control over what we proactively do with the time we have. Not every result is going to be what we want, and there will be dead-ends, work-arounds and incredible frustration – that’s life; and in my opinion we owe it to our child(ren).

Each and every one of us has had help over the years, before we had children. Why should now be any different. No – people will probably not know what to do, or what you need. And,  yes, they will likely not always be able to provide what you’re looking for. But something is better than nothing; and there is NO reason for you to travel on this journey alone. Build a tribe, look for people who aren’t like you – because they will bring a perspective to the table you never could have imagined; and it may just be the answer you didn’t have. Good luck, you’ve got one life so get out there and live it.