Friday, September 19, 2014

Fading and touching, touching and fading

Dear Harper,

Yesterday you would have been 17 months old, and I spent a lot of time thinking about you.

I feel like your memory is fading and that scares me. As Soren grows more real and heavier in my arms, your memory seems more insubstantial, like a whisper, a ghost. Something I can't quite grasp or feel.

At an event yesterday, I was listening to the story of the benefits of mothers touching infants, and I suddenly recalled the moment that broke me, when we first met with Dr. Porter, the NIH SLOS expert. Children with SLOS, he told us, seem like they don't want to be touched. It's part of the disease. He also told us to not pay attention to that, to hold you, to cuddle you, even if you took no comfort with it.

The tears started to flow.

We did hold you and cuddle you and kiss you. And maybe it was wistful thinking, but I felt sometimes like you were soothed in my arms. Like you recognized your mother's touch.

Now, I worry that I don't really have that physical memory anymore. That it's been banished by the very real feel and touch of the baby who is here.

But even as my hands lose that memory, my heart is constantly reminded.

"Is he your first?" "Two boys - are you going to try for a girl?" "Four years: that's a good age gap, was it deliberate?"

Well meaning questions, faced on a nearly daily basis, are constant reminders of losing you. And they always, always, always cause conflict.

There is no good way to answer.

"I have a four year old son, I think we're done, it is nice to that Shea's more independent."

Honest answers, but each one feels like a betrayal to you. On the other hand, it isn't comfortable to tell your story to strangers in casual interactions. That also feels like a disservice, and one that I'm not sure my heart could regularly withstand.

Sad and guilty if I do, sad and guilty if I don't. The ultimate grieving mother's catch 22.

I caught myself recently when someone asked how life with two kids was going. "Well, they're both still alive, so far!" I almost flippantly said.

I froze before I said it, and I understood, for the first time, the phrase about words turning to ash in your mouth. Because you weren't alive. I hadn't succeeded in the minimal parental effort of keeping all of my children alive. Not that your death had anything to do with my abilities as a mother. But making light of child survival felt like the worst betrayal of all.

I read the struggles faced by other SLOS families, with living children, whom they may never hear speak, and I wonder whether I would have been strong enough to face that.

Sad and guilty if you'd live, sad and guilty because you died.

Even on days when I can no longer feel you on my skin, Harper bean, I feel the hole you left in my soul. Love, Mommy

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