I’ve always loved writing. There’s something endlessly fascinating about putting words together. I envision what comes out of my head as visible music, where the words touch, repel, arch, and dance with each other. When I read the words of others, sometimes it feels like taking in a song through my eyes. Words have frequencies and cadence. No person puts them together in the same way and each time, the result is a unique song that to be repeated, shared, and revisited. Good writers weave thick chords of musicality into their words that can be examined and felt over, and over, again.
Writing helps organize my feelings. If one goes to a symphony performance, there is always the tune up in the beginning. A single note rings out, and the entire symphony joins. For a minute, it is cacophony. Discordant noises rub against each other. Sometimes you hear the quick flit of a scale being played. Then, the noise settles down and the story unfolds. Sometimes I’m surprised at what comes out. Sometimes I revisit what I’ve written and realize I’ve already changed my tune.
Me? I feel like I’m more in harmonica territory, rather than full symphony. Still, the act of writing is healing and cathartic for me, so I keep doing it.
Weeks ago, I submitted some of my writing to various places with great trepidation. I worried about rejection, but even more than that, I knew that I wasn’t entirely clear on why I was doing it. Mostly, I thought I wanted to reach out to a bigger audience to talk about Down syndrome. I needed to know if my ideas were shared by more than a few friends. I needed the hope of finding connection with more people who saw parenting a child with Down syndrome similarly as I do. People who would stretch my thinking. I’ve already found many of these people through this blog but I wanted more. It was also an act of spreading my writing wings, as one friend so aptly described it.
Finally, I wanted to know if anything I was writing struck a chord with anyone who didn’t already know me. I’d had plenty of people I didn’t personally know follow this blog, but part of me questioned it. Maybe this is reflects my own lack of self-esteem. Yeah, save it for the therapist, I know. Problem is, therapy is expensive, so here I am instead.
About those submissions. Mamalode took my post about my sister dying of SIDS and is running it today. What I wrote was only tangentially about Down syndrome, which I initially thought was disappointing, but ultimately, it feels good. It felt good to hear that someone else thought what I had to say was valuable. Plus, not everything has to be about Down syndrome. I ponder Down syndrome and disability a lot, but I also realize that it might show a emphasis in my daily thoughts that isn’t there. I realized that this has been an act of spreading my wings, after all.
So… I’d be eternally grateful if you visited my story on Mamalode (click HERE) and if you’re so inclined, please share with anyone who would find it meaningful.
Well, what started out as a short post turned into something completely different. Thanks for reading, world.
When I was nine years old, I found my baby sister dead in her crib. She lived for one month.
I had gone to check on her, as I often did when she slept. I knew something was wrong right away. She looked like, just a body. Life had left her. Or maybe she had left life. I’m not sure.
I remember flinching at the coldness of her skin. Her lips were blue. When I turned her head towards me, it flopped to the side. My stomach heaved. I was surprised that when I called 911, the phone rang and I had to wait. Somehow the idea that they weren’t immediately available to help me made me feel very alone and very scared. I hung up. Someone called back immediately. There was some relief. They were going to fix her. Take the blue away. They couldn’t, of course, or I would be telling a very different story today.
I can still feel the hard wood of the pews where I sat, and there was her impossibly tiny coffin, consumed by enormous sprays of cut flowers. My mother stood there. I knew even from observing from my vantage point, she was stuck. Unable to touch the coffin, but unable to leave, she just stood there. The flowers seemed like servants, ready to follow my sister into death, bound by the shortening of their own lives.
I don’t know how long that moment lasted, but eventually someone came to sit beside me. I actually don’t remember who it was. A woman. She smelled like hotel mints, artificial and strange.
“Your mother is sad. I can’t imagine what it is like, never to see your child grow up. All that possibility, lost.”
She sighed, patted my hand and left me.
I wish I could go back in time and ask her what she meant. Possibility… Did she mean potential? Achievements that never came to be? Love, unfulfilled? It seems so easy to think about the should-have-beens, rather than what simply was. Indeed, that had been the major hurdle to clear once we thought LP had Down syndrome. It was hard to let go of the could-have-should-have-been ideas on what my child would be, no matter how flawed I knew those ideas were.
What simply was. What was, was that my sister lived a few weeks in this world. LP has an extra chromosome. It simply is.
I took the Taters to my sister’s grave last week. I packed us lunch, and we headed out to make the long drive to the cemetery where my sister is buried. Mouse had picked a bouquet from our garden and held it carefully the entire way, nestled in a small plastic cup with water.
As we drove into the tiny cemetery, I bit my lip in anticipation, waiting.
I didn’t cry.
The girls ran around in the open grass, LP played with my shirt and blew raspberries on my shoulder, the sun heated our bodies, and it seemed alright. More than alright.
I see it a little better now.
There’s no linear path; no end game. Every moment we live is a prism of possibility. I grieve my sister’s death simply because her life was important. Her birth was joyous simply because she existed. There was no possibility lost. She was all the possibility she should have been.
I’ve wondered before, why she died when she did. And when we found out about LP’s Down syndrome, I wondered why. Neither matters to me much now. Morning glories open at daybreak and die in the heat of the sun. Redwoods live for centuries. They live out their possibilities in a fleeting moment or over lifetimes. Each life, just a moment in the womb or for a hundred years, leaves seeds of possibility behind. One of those seeds that my sister dropped bloomed in my heart that day, and I will try to remember every time I look at my children. Love simply, without conjecture, explanation, or justification.
Love simply, just because.