Death came twice this week.
One after living many years; one after living only a few. One is carried in my children’s blood; one I’ve never met face to face. One taught me about what has been; one taught me about what could be.
A caterpillar constructs its own coffin, dissolves itself, then rises again.
I try to accept that what life shows me, I may only witness, not have.
But I have so many wants.
I wanted a great grandmother to always laugh and tell her stories.
I wanted a beloved friend to have more days with her miraculous creation.
I wanted no pain.
I may want, forever.
But that is my lament, and shows how grief makes me selfish, even as I cry for another.
Death is difficult to witness. We try to ease the struggle but cannot do the work; our people go without us for the final act, so that they may emerge into what we cannot fathom.
I have witnessed great beings, old and young. I am grateful.
Say not in grief that she is no more
but say in thankfulness that she was
A death is not the extinguishing of a light,
but the putting out of the lamp
because the dawn has come.
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.
I am your mother.
I dreamed of you before your souls were tied to any physical existence. I was your mother before you even came to be. Your existence floated all around me, waiting. In the beginning, your physical form came into being within mine, pulled from the ether into my body. The first electrical currents of your thoughts began inside my body—each of you, the tiniest snow globe inside of me, housing the cracks and thunder bolts of your emerging personality. The first thumps of your hearts, began in me. Read the rest of this entry »