Sometimes my son’s disability and mine meet in a strange and gravely beautiful way. I hear him vocalize and I think my sweet boy is gaining his voice while I am losing mine. There is something poetic about it. I know rationally that the two events have nothing to do with one another. But I would gladly give him my voice, go silent forever so that he could speak. Sometimes it feels like that’s what’s happening. A precious exchange. Perhaps that is just a notion my psyche has conjured to protect itself from the horrors that await me with this disease. If I can fantasize some purpose to my loss, some meaning to it, it won’t frighten me so terribly.
I cannot pick my boy up anymore. It’s been months now that I cannot lift him. R does not use any functional speech but communicates in a secret body language with us. He grabs our arms and places them around his hips, pulls and lifts on his toes in a silent but clear request to be picked up. When he asks me to hold him I call my husband, and my husband lifts his weight while I hold him in my arms in a pantomime of how I would hold him before I got sick. I have often wondered if he realizes I can’t lift him, or if he thinks we are just behaving strangely.
A few days ago I sat on the grass watching him play with his dad. He suddenly ran to me, pulled me to my feet, and positioned me as if to say “don’t move.” He then ran to his dad, hand led him to me, and then requested I lift him while placing his dad’s hand on himself from behind. It was clear he did indeed understand that we needed dad’s help for me to hold him. He effortlessly puppeteered us into position for me to pick him up with my husband lifting his weight. We did, and he lay his head on my shoulder and melted into me. The intensity of my emotions hit me like a ton of bricks. I had forgotten how it felt to truly feel the weight of his form against me, his body soft and warm, the smell of his hair and skin. We’ve done this before but never so absolutely. This time he gave himself completely to our strange hug and it felt like before, like when I could truly stand and hold him in my arms. He lifted his head from my shoulder and stared deeply into my eyes while clutching my shirt in his little fist. This kind of eye contact is so rare and when I get it from him it feels like the most precious priceless gift. Like the clouds have parted and we are bathed in warm angelic light for a few unearthly moments.
Sometimes I worry that R might lose interest in me as my disease progresses. That if I can’t speak to him at all, if I can’t use my hands and arms to soothe and tickle and hug and hold him, that he will find he no longer needs me. But moments like R’s request to be held soothe my fears. I will always be his mother, and our bond can survive this, it can.