I sometimes feel a strange sense of guilt, or at least dis-ease, about Penny. It’s not what you might think. I’m about as comfortable as I can imagine being with a child who has Down syndrome, and I think my kids are too. (The other day, I was explaining that some athletes from the Special Olympics practice we were about to see might have Down syndrome. Penny did a fist pump in the air and starting chanting, “I’m Down syndrome! I’m Down syndrome!” William piped in, “I’m not Down syndrome! I’m not Down syndrome!” as if they were congratulating one another, and themselves, on these basic truths about their respective identities. I didn’t have the heart to tell them that I prefer person-first language: “I’m a child with Down syndrome!” I just shook my head in wonder at the two of them.)
The reason I feel uneasy is because it’s pretty easy for us to have a child with special needs. It took some adjusting, and I still have the practical challenges of IEPs and ENT visits and the like. But Penny is healthy, she’s happy, she reads books, she helps with her little sister, she gives me lots of hugs. William and Marilee, young as they are, love their big sister and get plenty of attention from me and other loved ones.
I feel guilty because we have a good life, and Penny’s needs don’t feel any more significant than those of our other children.
I was talking with a friend a few months back, and she accidentally completed my sentence for me. I was about to say that I thought Penny might “fall into a gap,” between typical kids and kids with special needs, but my friend said, “create a bridge.”
It’s possible, of course, that our sense of ease and comfort won’t last much longer, that a major health concern will raise it’s ugly head or that Penny will struggle more in school or with friends. But I’m hopeful that her health and happiness continue, and that we can use it not as a way to divorce ourselves from families with children with special needs who are struggling, but instead to connect, to bring together, to build bridges.
Some of you are feeling lonely and isolated and beaten down. I can only hope that this post hasn’t contributed to that sense of isolation. But some of you might need a gentle reminder, like the one I received from my friend, that though the world sees disability as negative (as I did—thinking Penny would “fall” into “a gap”), our children in and of themselves are gifts, to us and to the world around us.
God is a God of bridges, of going out of the way to find the lost and draw people near, no matter the cost. I am grateful, and honored, to think that our family might play a small part in God’s work of redeeming what has been broken, comforting those who despair, bridging the gaps.