A Gift of Grace

Rob Hudson is a Frank Trippett Advocacy and Outreach Fellow, and Digital Communications Manager for The Arc of Northern Virginia. Rob’s advocacy on behalf of his daughter, Schuyler, who has a rare disorder called polymicrogyria, has guided his personal philosophy for the past twenty years.

A Gift of Grace

There’s a narrative that parents like us have been hearing throughout the lives of our children with disabilities. I think it comes mostly from a well-meaning part of our community that is concerned about how we must be handling what probably seems like an unthinkable situation to them. They look at their own lives, either with the typical kids they have or the ones they imagine they’ll have one day, and they compare it to what they imagine our lives must be like. We try to tell them differently, that the anxieties and heartbreaks we experience walk hand in hand with the joy and the privilege we feel. But maybe that’s one of those things you have to live rather than being told. We try, though. I’ve made a career out of trying.

“Special kids are given to special parents,” we’re told, with the message being, of course, that we are those extra-special parents predestined for this life. “The universe never gives you more than you can handle,” we’re also told sometimes.

Speaking just for myself, I know better from watching friends and fellow parent advocates who were handed far more than they could handle, and suffered mightily for it. But more than that, I believe that special parents aren’t pre-destined or assigned by fate. I believe we’re made, formed by the experiences we have and driven by our love and commitment.

Probably most importantly, we mess up. Sometimes in small moments that are forgotten as soon as they happen, and sometimes badly, with repercussions that shape the future. Mostly, though, our mistakes are probably like those made by any parents, resulting from our flaws and inconsistencies as human beings. I guess they just land differently with our vulnerable kids.

This holiday, I have a gift suggestion for all the parent advocates and family members and caregivers out there. It’s a gift you should give to yourself, the same gift I’m going to try to give myself.

I recommend giving yourself a little bit of grace. Cut yourself some slack.

For me, the issue is probably the same as many of you. I can be impatient. That seems like a minor statement, but it encompasses a lot. When my daughter was in school, I could be incredibly impatient with her educational team. I lacked patience with family members and friends who just didn’t seem to “get it”. As I grew older, my impatience expanded to a society that appeared to lack empathy and compassion for my daughter and her friends. (I’m still struggling with that one.)

The worst, however, are the times when I grow impatient with my daughter, moments when despite twenty-five years of experience, I seem to forget everything I’ve learned. I don’t always listen to her closely enough, despite her lifelong communications challenges. Sometimes I don’t recognize what feels like stubborn or antisocial behavior for what it often is, a manifestation of her complicated neurology. I get it wrong sometimes, and almost always because I didn’t just stop and take a beat.

I know what I need to do, and I try to improve, to be a better father and advocate and human being. I remind myself to let love and compassion drive my reactions and my choices, and to always, always remember that there’s nothing that’s so hard for me that isn’t a much greater challenge for her.  When I get it right, that’s why.

The reality for us all is that this life can be difficult, and we need to accept that sometimes it’s a little harder than we’re equipped for. That’s where our personal growth happens, and it’s where we need to grant ourselves the grace and the space to allow it to happen.

As we move through this holiday season and into a brand new year, my sincerest wish for all of you, for all of US, is for the challenges our loved ones face to be few and manageable, and for the happiness and the uniquely beautiful, human experience that come from this life to be abundant. I like our chances.