Peace

"I hope you've found peace," she said to me, giving my hand a squeeze.

"I have," I replied automatically to the colleague I hadn't seen since Harper was born and died. Because how else does one respond? Tell her there are many more good days than bad, but bad moments still exist? Tell her we still haven't scattered Harper's ashes, and I'm wondering if they'll always be on our shelf, because the effort of choosing a date and finding a babysitter for Shea (this is something we want to do alone) feels like too steep a hill to climb? Tell her how I want another baby, a healthy baby, so badly it literally keeps me up all night?

Peace is a relative term.

This is the first time I've been alone, truly alone, traveling for business without my family, in the months since we lost Harper. It's given me a lot of time to think. And not sleep. I miss Shea. His realness, his cuteness, his boyness, grounds me, makes me realize no matter how much we lost, I am still very lucky.

I am surrounded by a meeting full of people that Don't Know. I've been thinking about how that is only going to be more the case as time goes on. As difficult as it is to encounter people who ask about the baby, only to have to relay bad news, over and over again, it's almost suffocating to be in a crowd where my grief is utterly hidden. I guess I hadn't realized how much it has come to define me, it makes me feel like I'm hiding a secret identity, or an important part of myself. Still, the death of one's child is not something that can be easily woven into the conversation.

The SLOS online discussions get more and more active over time. I read about all of the medical issues these kids are having, and the matter of fact sharing of information, the leaning of support, the words of comfort, exchanged by the parents, and I think about how different everything could be right now. I don't know that I would have been strong enough to raise a child severely effected by SLOS. I really don't know if I would have been strong enough to love that child.

It was easy to fall in love with Harper. For all of her problems, she was a baby, with all of the helpless charm of a newborn. She was soft. She was tiny. She held our fingers with her little hand, and squeaked little squeaks. I could hold her and rock her and sing her lullabies.

Would I have still loved her if she lived in all her damaged glory? G-tube, surgeries, wheelchair, vomiting, insomnia, tantrums, adult diapers, and all?

Every SLOS parent I've met glows with the love of their affected child. I honestly don't know that I could do that, that I wouldn't have spent all of my time in self-pity and resentment.

No matter how much we lost, no matter how bad those bad days really are, I remind myself that we are lucky.