It’s my least favorite anniversary so far. January 21 marks one year since we received our son’s muscular dystrophy diagnosis. Tradition says that gifts commemorating first anniversaries are those created of paper or timepieces and clocks for a more modern celebration. I’m not super-loving the traditional avenues, so respectfully, I request cake or how ’bout a margarita? Tequila never goes out of style; it’s always correct. To mark the occasion, I’m going to work myself into a booze- and sugar-infused haze, hoping only to wake in the fuzzy disbelief that accompanies a hard-earned hangover. Ooooh, my aching brain. I need a big glass of water. A BIG glass. And maybe an Egg McMuffin to soak up some of that alcohol.
I’m not. Although an Egg McMuffin sounds delicious to me right about now. No more disbelief. It’s real, it’s forever, but it doesn’t require a chemical bender. Today. A year changes you a lot.
I became part of an MDA Parent/Caregiver Facebook group last year, but have participated only marginally. I crafted a brief intro online, but I don’t think these people are going to like me much. Their profiles and posts are lovely–full of love and optimism and hope and gratitude. I’m like, “fuck this.”
Even a full year in, I’m not of the “look what MD has opened doors and my heart and my mind to” mindset. Don’t misunderstand me: I am overflowing with love for my child, both my children of course. There are days I sit at work, wishing I could be home hanging out with the kids, who if I’m being honest, some days only minimally register my presence. I’m mega-nostalgic these days, recalling their babyhood and toddler days–two sweeter souls than their preschool selves have never walked this earth. They need me so much less now than they once did as they make their way in their world, and though I miss those sweet baby faces and slobbery kisses, I know I’m doing my job if they move toward independence. I feel overwhelmed with maternal love for my Yahoos, and I finally understand how a heart can burst, physically ache, with love. I’m grateful for the many gifts my children have returned to me. But as it relates to MD, I’m neither optimistic nor hopeful. Yes, there are medical advancements being made, and yes, incredible advances in accessibility and medical equipment were born in the late twentieth-early twenty-first century–these advances give rise to optimism and hope to be sure.
But compared to NOT having MD at all, well. . . not so much, that’s all.
These caregivers paint lovely watercolors of their lives. I don’t, but that doesn’t mean everything in my life is awful, not by the longest long shot. Following that 180 degrees, one might infer that their outward profiles are positive, but maybe not everything is rainbows and unicorns all the time for them. Reasonable, respectable adults don’t lead with doom and gloom or “fuck this,” and obviously I wouldn’t either. You’ve got to know me to know me, if that makes sense. My listmates probably say the f-word less often than me (most people do, but I think I actually use it less than I might lead you to believe here). They talk about their faith in a higher power. Nope. They write about their children whose lifespans can be counted in a finite number of days. We do have something in common that I don’t share with any of my real-world friends though, and maybe there’s value in that. Maybe they wouldn’t summarily dismiss me because I can use the f-word as every conceivable part of speech and don’t believe that my child inheriting a shitty disease is meant to teach me some kind of lesson about my purpose. They do talk about seizing the days though, as do I. They do write about wanting answers and not always receiving desperately sought information, as do I. Maybe I start retooling and sketching an updated “Hi, I’m Wendy, and my twelve-year-old son was diagnosed with, well we don’t know precisely what the hell he’s been diagnosed with . . .” introduction.
I’m sure they’re lovely, but I don’t want to have to know them. Still. I said that as my husband, son and I walked from our very first neurology appointment back to the car. I see exactly where I stood when I uttered the words just barely under my breath, I feel the weight and texture of the dress I was wearing, and I hear my shell-shocked one-year-ago voice clear as a bell. Happy anniversary to us. I don’t need a clock to tell me what time it is. Where’s my damn cake?