Watching Oscar learn to roll over and sit up and eat food is reminding me of Charlie at the same age--which is about when I started this blog. So I looked back to the beginning and found the post where I introduced Charlie. I was a little surprised that I wrote that I wished Charlie "looked like a regular kid."
1. He is a regular kid. Duh.
2. Did I really wish that? Because I like Charlie exactly how he is. But I do remember obsessing about the way his skull looked crushed, and you can't really see that anymore now that he has hair.
3. Won't he be really bummed out when he's old enough to read all of this? Why am I telling the Internet this? Am I a terrible, terrible mother?
Something happened recently that made me question things I'd thought I was pretty solid with.
I watched a segment of the Today show about a young couple in Arkansas who found out the baby they were expecting had Trisomy-18. Doctors told them their baby would die in childbirth or soon after. So these first-time parents delivered the baby, a boy named Eliot, and then showered him with a lifetime of love for the 99 days that he survived. They had a birthday party for him every day with hats and a sign, and they went for walks in the park and gave him baths and all that normal stuff. They did not complain. At least, not to the Internet.
I walked around in a daze for two days after I read their blog. (Heather N. and other moms of new babies--don't click through. You're too recently post-partum to be able to bear it. TRUST ME.)
I had a very early morning talk with Jeff about God and souls and what it means to be a parent and the four little balls of cells that started inside me and did not make it. And Jeff demonstrated his awesomeness once again. He may never get around to putting up the blinds and curtain rods that have been sitting in their shipping boxes in the basement for months, but if you are having an existential crisis, he is the one to call. If I could bottle his calm, I would brush my teeth with it, dab it behind my ears, and stir it into my tea every morning.
So what I'd like to say here now is, I am not a terrible, terrible mother. I was honest, because I wanted to feel less alone, and to help other parents of kids with craniofacial birth defects to understand that everything they are feeling is OK--you are not alone either. All parents have moments when they wish they could have a do-over--have a kid who wasn't so loud, or so sensitive, or so much bigger than other kids, or so much smaller, or for God's SAKE when is Summer going to stop sucking her fingers? Because I'm not sure I can live with her for one more day. And we all have moments when we actually shake with gratitude for the kids we have. Like when one of my old summer camp friends posted pictures on Facebook of her eight-year-old daughter going off to our same old camp, and the concept stopped me in my tracks for the second time in a week (after Eliot) as I thought about sending Summer to sleepaway camp and realized that there is absolutely no way I could live without her for an entire month, not now, not ever, because my insides would curl up like a dead bug trapped between the window and the storm glass.
Eliot's parents now have a healthy little girl. But they will never forget Eliot. And neither will I.
