Hope Bigger Than Fear

I’m just home from a conference. I spent 2 days surrounded by families and individuals with disabilities at a conference about life in Disability World – the ins and outs of service systems, how to advocate for yourself and for systems change, and discussion of the Big Ideas that cause us to step back and look at those systems with a critical eye. Self-determination was a prevalent theme.

The “dignity of risk” cropped up here and there as well. It certainly goes hand-in-hand with self-determination. I’d argue it’s one of the guiding principles. After all, self-determination is about guiding your own life, and don’t we all sometimes guide ourselves into uncertain situations when we feel the payoff outweighs the risk? And haven’t we all failed at something, only to learn something about ourselves? There is dignity in choosing something for yourself, even if it is risky or ends in failure. For me, the dignity of risk is the ultimate sign of independence – more than having my own home, or having attended college, or driving a car.

Here’s where raising a child with a developmental disability feels a bit different. The stakes of failure seem so much higher. It’s easy to worry, and in that fear, to hold your child back. And frankly, there will be a lot of people around you telling you it’s ok to hold your child back. That it’s better, smarter, safer.

I think about all I hope for Rowenna’s future – for her to be happy, to feel fulfilled, to be an integral part of her community. I hope for her to have real friends and things to look forward to and be excited about. The trappings of all that, the whats and hows, are less important. Rowenna will guide us there. But there are fears, too. What if we can’t figure out a way for her to achieve her goals on her own? What if we can’t find a good team that knows and loves our girl and are willing to support her self-determination? What if we allow her the dignity of risk and she gets hurt – emotionally or physically?

One of the speakers said something I’m going to tuck away for those days when the fear looms big and I want to sweep my little chickie back under my wing: make your hopes bigger than your fears.

It’s so simple, so beautiful and yet I know there will be days when it’s a challenge to remember. But it will be there, and I’ll use it to remind myself to keep adding to my hopes for my sweet girl and her future.