Love Simply, Just Because
Posted: June 25, 2013 Filed under: Down syndrome, emotional stuff, personal growth | Tags: grief, loss, Sudden Infant Death Syndrome 27 CommentsWhen 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.
Possibility lost.
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.
I’m Removing My Prenatal Testing Halo.
Posted: June 19, 2013 Filed under: Down syndrome, emotional stuff, personal growth | Tags: Amniocentesis, CVS, Down syndrome, miscarriage, Mother, pregnancy, Prenatal diagnosis 53 CommentsI have had my moments of self-righteous judgement. Shocking, I know. I’ve strapped on my righteous halo in secret, just for comfort.
In the early weeks after discovering LP has Trisomy 21 (Down syndrome), I spent time pontificating on life and riding some emotional waves. During that time, for a brief moment, despite all my reservations on prenatal testing, I wished we hadn’t opted out. For a brief moment, I thought we should have terminated.
For that brief moment, I felt a lifetime of guilt. Read the rest of this entry »
Happy Father’s Day
Posted: June 16, 2013 Filed under: emotional stuff, kids, parenting, the husband | Tags: Father's Day, fatherhood, Love, Marriage, Parenting 8 CommentsDear Husband,
In a way, I feel like there was no time in my life when I didn’t know you.
You remember that? That was the first line of my wedding vows.
I’m not sure if I ever told you this, but I sorta kinda maybe decided I wanted you the second time I really noticed you. The first time, you were still encumbered by that unfortunate ponytail and I thought you were a little full of yourself. Sorry. But that second time? That was the time. I just couldn’t shake the feeling that you should be mine. That first night we hung out, smoking cigarettes on my dorm room floor, it seemed like I’d known you all along.
That feeling came and went over the years, I’ll admit. While we were roaming the globe and dating other people, that feeling sat in the back row. Patient, waiting. Still, no matter how long it had been, or what had passed, seeing you was like coming home. I don’t know how many times I circled around you in those years. Leaving, coming, leaving again. No matter where I thought I was going, my flight path traced the same repeating orbit, back to you.
And now we have children. Beautiful, wise children who are flying away further and further every day.
I see the way you teach them honestly and never hide their world from them.
I see that you treat them as equal spiritual partners.
I see how their little bodies fly to yours when you walk through the door.
I see the ray of joy and the shadow of pain on your face, every time our children sheds a new skin and emerges a little older, different.
I see that you’re secretly checking behind bushes for kidnappers and scanning the sky for lightning that may strike your babies (even though there’s no storm).
I see you don’t turn away from poor behavior or unkind words, and show it to them each time, so they can learn.
I see your unconditional acceptance of who they are.
I see the father I always wanted for my children.
So here we are, the five of us. Flying, landing, flying again, around and around, spiraling higher and higher. Now, each time I look at one of you, it feels like home. There was never a time in my life when I didn’t know you.
Happy Father’s Day.
All My Love,
Your Wife





