As we drove up the hill to my parent’s condominium for Easter on Sunday, one of those moments happened. The trigger was tiny, ridiculous, but there it was. A toddler walking with his dad, holding one of dad’s fingers, going at a turtle’s pace. And there it was, as if it dropped from the heavens into my heart, sorrow, and a tear, quickly rubbed away hopefully unnoticed by anyone but me.
It was one of those unpredictable moments of grief that crop up along the way when you parent children with disabilities. Why did that sight get to me? Because we did that exact same thing with oldest child, Hannah. The child who sat through church and then has to wait for dinner on a holiday, and they’re restless and buggy, so you take them out for a little walk to blow off the steam. It was a totally normal parenting moment.
And a moment I never shared with my boys.
Alex could walk around that age, but going for a walk was out of the question, and Ben didn’t even take his first steps until he was well over two years old.
When we found out Alex had Down syndrome when he was born we took the time to grieve the big stuff and gain perspective, the big stuff isn’t sneaky, it’s right there in front of you, demanding to be dealt with. It’s the minute, every day moments that sneak up on you with grief that’s almost entirely unpredictable.
How would one expect, when carting an 11 and almost 15 year old to Grammy’s house to be struck with a moment of grief from early childhood. Even though it can be a giant pain in the hiney to have to manage a restless toddler during a long day of holiday celebrations, it so often happens that during those moments the real sweetness of parenting occurs. That time he first sees a frog or picks up a stick which, during the course of the brief walk, becomes all manner of tools. The moments of little joys that are often remembered long after all the egg hunts and Easter dinners become almost indistinguishable in our one from the next in your memory.
Then there are the moments you don’t realize you’re missing until it smacks you in the face, with no advance warning, and that is the ongoing grieving of parenting children with disabilities. You can go weeks or months without ever feeling a twinge, but there’s always something beneath the veneer that is waiting to be revealed, with the most uneventful of events. Like seeing a father and son out for a perfectly normal walk.