By Katherine Claxton, LCSW
Grief is proof that we love in this world. It can be a sob that is too deep for sound, or the searing pain of an absence. It’s the relationship that just isn’t the same as it used to be, or the opportunity that passed us by. It can be the discomfort when we realize that life isn’t turning out the way we had planned. It’s often something we believe we have dealt with, only to have a wave hit us from behind when we were least expecting it. Suddenly our face is in the sand and we are gasping for air, trying to make sense of what just happened.
I remember one particular day where the peaceful mundane of everyday life was interrupted by a surprise wave. I was watching my nephew’s baseball game on a Saturday afternoon. My son Joshy, whose infant nursery was decorated in a sports theme, was sitting next to me. It was just an average day filled with the sounds of cheering parents and the clink of metal connecting to the leather ball. My son had his tablet held up to his ear, grinning widely to show his well-spaced teeth, eyes looking up at something delightful that the outside world just can’t see. His occasional squeals of joy would make me smile during the innings, even if other parents uncomfortably shifted in the bleachers as they weighed whether to engage or ignore.
Suddenly the grief wave hit me: I want to be cheering for Joshy instead. I want him to have the option to play baseball. I want him on that field, not confined to the chair next to me. I want my nephew and son to play together on the field as cousins. But he can’t. He doesn’t even want to. His world is puzzles and audio books and spinning in circles to music. He has no interest in standing on a white square while the pitcher shakes his head at the catcher until he chooses the correct pitch. He has no interest in running to the next “white square” because there isn’t anything interesting to do there once he arrives. Joshy sees no point in these silly games we mere mortals have created for ourselves.
Predictably, the second wave quickly follows the first: guilt. “Why can’t you just accept your son for who he is? Why do you long for a life you simply do not have? You should be grateful. You should be a better mother. You should be engaging those other parents to help them learn how to interact with the disabled community. You should… you should… you should.”
The hot tears roll down my cheeks but I can’t let my face give in to the emotion. I might not regain my composure if I do. Who am I even missing with this grief? For the first year of Joshy’s life, we were just a regular family with a toddler… and a baby. Ten years later we are just a regular family with a pre-teen… and a baby. The world kept marching on. He just didn’t. He didn’t begin to speak. He didn’t grow out of diapers in spite of the best potty training efforts. He didn’t stop loving his baby toys. He didn’t stop needing help being fed. Bath time hasn’t changed, except his legs just keep getting longer. So many parents long for one day back with their babies. I guess in some ways I’m longing for one day with the older version of him I thought he’d become. I will never meet that young man.
In order to fully embrace my precious son and all of the wonder that he is, I have to allow myself to grieve the grown version of him who will never be. Instead of dancing with him on his wedding day, I will spin with him in the kitchen to Yo Gabba Gabba. He and I will play “ring around the rosies” in the pool and he will never become too cool to be spun around by his mama, even if he is physically too big for me to lift and throw like I used to. He will give me big hugs and slobbery kisses without embarrassment.
Sometimes I imagine that this neurotypical older version of Joshy is watching us, knowing that the actual version of himself understands more about what really matters in this life than he ever could. More than any of us ever will. I’m grateful for the gift of perspective, taught by this child in my arms whose limbs keep growing, whose eyes watch the magic the rest of us cannot see.