Jennifer Bush
www.wantapeanut.com
My brother died of a brain tumor in 2002. Next March will mark the ninth anniversary of his death. Sometimes it feels like he was here just yesterday. Other times it seems like a lifetime ago; in many ways it was. Since his death, I’ve worked at three companies, met and married my husband, got a dog, bought a house and had two children, one of whom has special needs. Today, I identify more with “mom” than with the person I was when he died: recent MBA grad living and working in Silicon Valley, focused and serious but willing and able to jump on a plane to New York City at a moment’s notice.
A little over a year ago, as we were going through the diagnosis process with my son for autism spectrum disorder (ASD), I thought a lot about my brother. My first thoughts were what I’ll call “the fantasy of the law of averages.” Data from the Centers for Disease Control and Prevention shows that an average of 1 in 110 children will be diagnosed with ASD. I didn’t know the chances of getting a brain tumor, but it had to be pretty rare, right? So I held out hope by asking myself “what are the chances that my brother would have a brain tumor and my son would have autism?” That had to be really rare. So I figured it wouldn’t happen to me. My son would be just fine.
Before you start wondering what kind of two-bit business school gave me my degree, let me assure you that I do understand that this is not how things work. I’m not going to go through a lesson in probability here, although a simple Google search will provide many excellent tutorials. Suffice it to say that before they were both born, the chances of my having a brother with a brain tumor and a child with autism might be very low, but the fact that my brother did have a brain tumor does not change the likelihood of my son having autism.
And anyway, it is beside the point. My brother did have a brain tumor and my son does have autism. So after a lot of crying and shouting “not fair, not fair!” aimed at no one in particular but mostly in the direction of my husband, I started to have some other thoughts, this time about loss.
On the one hand, I know what real loss is. I am thankful that I have my little boy with me, happy and alive. We are not facing a life or death situation. My parents, who still hurt with a pain of which I can only now have even the smallest inkling, are reminders to me of that. Still, most parents do go through a grieving process when they find out their child has autism. I know I did, and I suppose still am, bouncing between anger, depression, and acceptance at any given moment. But this grief is of an intangible loss: of hopes and dreams, of friends whose kids are developing faster than mine, and of the type of mom I had imagined myself to be.
Unfortunately, loss is part of the human condition. Some people do seem to have more than their fair share of bad luck, but no one gets off completely. I don’t mean this to be depressing. Rather, let it be comforting. Life is hard, but we are not alone. Those of us who have been spurned by fate, or karma, or yes, even probability, simply learn to live a little less in the “what should have been” and a little more in the “what is.” Carpe diem.
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Originally posted March 30, 2010, in a slightly different form, as part of the Silicon Valley Moms Blog
