When my great-aunt passed away in June of 1993, I was outwardly calm. Every errand and ritual that had to be completed was fulfilled with precision and dignity. The business of grieving, mourning, internalizing the loss was set aside until the rigorous process of remaining alive and raising a family could be brought back to the level of balance and normalcy that such a task requires.
I was slightly less competent when, five years later, my marriage fell apart. I girded myself up for the next upheaval: J’s diagnosis. Of the three events (life-changing events, each in their own way,) the worst one was the last. I dressed in mourning for my aunt for three months. People tried to rush me through my sorrow; my mother, as I packed up our household to move to another town, said words I will never forget: “well, that’s done and now you move on and forget it.” Similar things were said about the demise of my ten and a half year-old marriage. “Oh, well. That’s done. Move on and forget it.” With two kids resulting from said marriage and the dilution of the person I was (and had to rediscover if I wanted to survive this trauma,) kinda hard to forget a marriage gone awry.
J’s diagnosis was expected. I am, after all, neither clueless nor blind. I didn’t dress my body in mourning colors for this. I didn’t lay down to die. I didn’t really do much other than pretend like I could handle this and that it was all going to be just fine. The diagnosis was, yes, a relief, but it was also the opening of a door through which “my child” was leaving and this “changeling” was entering my life in an official capacity.
The creature before me looked like J. He sure as heck sounded like J. He acted like J. He smelled and felt like J. But the J I had hopes and dreams and aspirations for was gone. Sounds horrible, doesn’t it? I am a bad mother, aren’t I? I suppose I am. I am saying that, in essence, I lost a child to Autism. How horrible!!!
I did. The kid that I carried in my belly for 38 weeks, that I brought home from the hospital and breastfed was gone. He had morphed in front of me, and I knew that he was somewhat “altered,” but I had clung to the J I knew, and now I was told -like Sophie Zawitowska- to choose a child…only no real choice was given. I couldn’t really say “I want the old J, please. This quirky, closed-off, distant person who attaches himself to my breast in spite of the fact that he has teeth and is much too big for breastfeeding, is NOT J and I’d like to return him.” This child, this labeled and stamped child was my child. For better or worse.
I don’t know what it’s like to lose a child to illness, catastrophe, accidental death…I have no idea. I can turn around and look at my son’s body, see his smile, hear his voice, touch his face and know he is breathing and living. He’s alive. He’s here. He’s J. He’s the J I was supposed to parent. The mourning process for the missed opportunities has been long, drawn-out, almost incomprehensible to me. I am constantly having to remind myself that this is OK, that this is do-able, that this is the way it’s supposed to be.
I love J. I love him more than words can say. I don’t love him more because of his Autism. I don’t love him any less because he’s not the J I thought I was getting. I simply love him. I would have loved him even if he’d been “normal,” and had done all the things that “normal” children do to irritate, disappoint, frustrate, annoy, hurt their parents. That the rites of passage, the rituals of life, the entire ebb and flow of our existence as a family are marked by J, hinge on J, center on J is something we all know and accept, but that doesn’t mean it doesn’t affect us.
Dada and I sometimes have this conversation: he has always known “autistic J,” and TGG and I remember a time when the word “Autism” wasn’t attached to J’s name at all. I choose every day, and some days it is easier than others, to be upbeat and proactive and energetic about this monkey wrench thrown into the machinery of my life.
Notice that? I said “my life.” Like it’s personal. Like I’m the only one affected. Like this isn’t happening to anyone else, not even J. I said that because I’m selfish. From time to time, I do take this personally, and I feel like it’s MY failure, MY fault, MY problem, MY hurdle to jump over. I’ve been doing this, officially, for fourteen years. On March 26th of 1999, I called Dada (who, at the time, was planning to visit me for the first time in fifteen years) and told him “these are the facts. This is the time to choose if you want to do this at all. This is the moment when, if you make the wrong choice, your entire life can be altered.” At the time it didn’t even cross my mind that he’d ask me to marry him; I was thinking of the trauma of being introduced to two children and walking into a family that had just experienced several traumatic incidents in quick succession (hurricanes count, don’t they?)
The rest is history. Well, the rest is known. That’s more accurate: you know where we are and what we do, and -more or less- you have an inkling of how we do it. The moments when we dance, we mourn, we scream, we laugh, we get frustrated…you know we go through all that, and you go through it, too, in your own way. In your own timeline. At your own pace. Where you are and how you are…
None of it is wrong. None of it is bad. It’s all yours and you handle it…when you handle it…how you handle it. We prop each other up from time to time, and we know when to be silent and when to turn away to allow others the privacy of their (seemingly untimely) grief. Even if you got your child’s diagnosis yesterday, six weeks ago, three years ago, fourteen years ago…grief is allowed, grief is OK, grief will propel you…
At least I have the consolation of stretching out an arm and grabbing J’s hand, hugging him, kissing his nose and being annoyed, frustrated, irritated, entertained, made joyful by him. And that, my friends, is something that will buoy me forever and a day… Yeah, if you can’t make it better you can laugh at it, but…you don’t ALWAYS have to, especially when someone else is telling you to get over something that, well, there’s really no getting over because, I suppose, it’s a little bit like walking around with shrapnel in your body.