Zebra

When you hear hooves, think horses not zebras. This is what I tell myself a lot, especially since I’ve had kids. It’s become such a part of our vocabulary at home if my face looks a certain way, Rich will simply say, “horses.” Or he used to anyway. 

If you asked me if I knew something was “wrong,” I would have answered in the affirmative but it would not have meant much because for as long as I can remember, I’ve felt like something is at least a little bit wrong or at best, will soon be wrong. In high school I convinced myself that I was HIV positive even though I was not an IV drug user, nor had I ever had sex. It just seemed like something I really needed to worry about. I eventually gathered the courage to get tested and when the nurse asked me why I thought I might have it, I was unable to provide a reasonable answer. Turns out “because” was not reason enough to draw the blood. We can take a deep dive on this at some point, but for those of you familiar with this feeling, it’s anxiety and it’s ever present undercurrent of dread is exhausting. 

Over the last year, I have stayed up a lot in the middle of the night googling what could be “wrong” with Andrew. Google is a dangerous place for worried moms. About five months ago, during a particularly impressive journey down the rabbit hole, I stumbled upon a rare genetic disorder. “Happy demeaner”, “light colored skin and eyes”, “tapered fingers”. Tapered fingers? At that, I turned on my phone’s flashlight and moved over to look at Andrew’s fingers. They looked a little tapered. Then I googled “normal baby fingers” and saw that his fingers looked a lot like babies who did not have this disorder. “Oh good,” I thought, “That settles it. He doesn’t have it.” I rolled over and attempted sleep. 

The hardest part has been knowing the doctors and specialists were not telling me something. I would say things like, “it could be Cerebral Palsy,” and then I’d search their expressions for answers. I always came up empty. Once I threw out “Spinal Muscular Atrophy” and the neurologist examining Andrew said nonchalantly, “No. His reflexes wouldn’t be this strong.” She wasn’t looking at me when she said it, but if she had she would have witnessed me crumble into a mixed heap of gratitude and exhaustion. Spinal Muscular Atrophy had been something I had worried about daily for five months. 

About a month ago I got a ding on my phone. Andrew’s genetic microarray results were in. My heart lurched. I debated not reading the report. I didn’t want to know. I didn’t want whatever was in that report to get inside my head, make me doubt Andrew, make me fear our future. I felt anger towards the doctors. This is their fault. They just look for what’s wrong. Can’t they see how incredible he is? 

After a couple minutes of this, I called Rich over, logged him into Andrew’s medical record, and handed him my phone. He read for a bit and then he sat down on the floor. I felt instantly sick. My hands got cold. Breath short. I paced and then resigned myself to the floor next to Rich. 

The next few days were the worst of my life. 

I’ve always been fascinated by despair. Not in a masochistic way but in how it breaks you open and if you let it, gives you access to joy otherwise not accessible had you not had your heart blown to pieces. When the future you planned becomes less probable, the present moment becomes a substantial and reliable source of solace. Something else happens for me when I feel unwavering grief. The angels come. For my scientific, logical friends, I know this sounds woo. It is woo. But I can feel them with such certainty, they may as well be sitting at the table drinking tea with me. How else can I explain in one moment not wanting to go on and then in another, feeling not only that everything is going to be ok, but everything is good, right, and actually joyful. 

After reading this some will say I manifested what happened to Andrew. Believe me, it’s crossed my mind. Magical thinking has become commonplace. I’ve already had three people suggest it was the covid vaccine that caused this. There’s a long history of blaming mothers for everything regarding our children. And even though I have a strong grasp on the science of his diagnosis and I wasn’t vaccinated at the time of conception, it doesn’t mean I don’t sit in my car and cry every time someone suggests I’m to blame. I imagine as time goes on I’ll know what to say and my skin will thicken. Or perhaps I’ll continue to struggle with how cruel people can be. At 42, I’m still the one who comes up with a great come back about three hours too late. 

So there you have it. Turns out the hooves  were zebras. He does have that rare disorder. Even with his normal looking fingers. Our Andrew is a .00005. An Angel. Literally. He has Angelman’s Syndrome. A very rare, very serious neurogenetic disorder. 

But don’t despair! We’re certainly not. Sure, there’s tough days and big unknowns in our future but here’s what I do know: our expectations for Andrew are high and we are confident he will rise to the occasion time and time again as he already has. We don’t believe in wallowing in his diagnosis. We have it, it’s informative, and that’s that. As a mother to another Angel reminded me the other day, “Once again we are convinced that our limits are only in our heads and our angelic children can do anything.”