As Witness to LifePosted: November 15, 2016 Filed under: emotional stuff | Tags: aging, death, grief 6 Comments
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.
Entering Disability Culture as a Parent: Memory, Relativity, and TruthPosted: November 26, 2013 Filed under: advocacy, disability, Down syndrome, emotional stuff, kids, parenting, the future | Tags: disability, Down syndrome, grief, memory, Parenting 21 Comments
Mouse pronounces the word “remember” with a “b” instead of an “r” at the beginning. Bemember.
I asked her once if she noticed her own pronunciation. She sat back thoughtfully, held up her hands and tilted her head in that exaggerated way unique to young children (something about the small arms and chubby bodies), and smiled. She said that it was on purpose because the act of remembering, or bemembering if you will, is about thinking about how you were being. In her words, it came out something like, “Well… Bemembering is for how you loosed to be.” (At the time, she also had a really hard time with words beginning with “u”. She’d always add an “l” in front. So “used to be” became “loosed to be”.)
I was entranced with the resulting stream of questions. Read the rest of this entry »
Love Simply, Just BecausePosted: June 25, 2013 Filed under: Down syndrome, emotional stuff, personal growth | Tags: grief, loss, Sudden Infant Death Syndrome 27 Comments
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.