Making decisions

I just finished reading the book, "Five Days in Memorial: Life and Death in a Storm-Ravaged Hospital." Ostensibly it's about what happened at Memorial Hospital in New Orleans in the days of Hurricane Katrina and after, but much of the book is about euthanasia and end of life decisions.

It brought back a lot of memories. It made me think a lot, from the comfort of a little distance, about the conversations we had about Harper.

In many ways, Lou and I never had to actually act on the decisions we made about Harper. She was too sick; she died before we had to think about things like refusing respirators or removing feeding tubes. We did decide she'd been too poked by needles, so stopped all IV fluids and treatments. And we did stop aggressive speech and physical therapy, when it became clear she was never going to benefit from those efforts. We chose hospice over treatment.

I don't regret any of those decisions. I would make all of them again.

Reading back through blog posts from that time, I realize how accepting Harper's fate and not pursuing more medical care allowed us to enjoy the time we had with her. It allowed me to fall in love with her.

It is the ultimate irony that embracing my child's death made losing her that much more difficult, because it gave me the freedom to bond with her and be a real mommy to her. It makes me miss her, even now, even knowing she was not the child I wanted or dreamed about.

The author doesn't talk about that in the book.

Stories of euthanasia, end-of-life care, palliative care - in the mainstream, it's all about adults: elderly people, people with horrific neurodegenerative diseasese or terminal illnesses, people left decimated by accident or injury.

Nobody talks about babies. Nobody talks about kids. Or what it's like as a parent having to make those decisions for your child, for your tiny infant.

Reading the book made me realize how fortunate we were in the compassion and counsel of the doctors and staff at Georgetown. We were in the worst possible position as parents, and they really stood by us every step of the way. Every decision. Every new discovery.

It's also given me perspective on how easy it is to be caught up in the parental "what ifs"; the minutiae of the thousands of daily decisions we make about our kids. You see it on discussion boards, angst filled posts about when to switch car seats, what formula to feed, whether or not to circumcise, sleep training. I remember agonizing myself over some of those decisions with Shea, and I consider myself a pretty laid back parent.

In retrospect, those sorts of decisions seem trivial.

It's not entirely an issue in the past for me. That was the other realization I had while reading the book. We might have to make another decision. Were I to become pregnant with another SLOS baby, we would terminate the pregnancy. It crushes me, beyond description, to think about that circumstance. But I would do it, to avoid bringing another child into the world only to be lost. That is the ultimate horrible decision as a parent. I really, really hope I never have to make it. I would mourn that baby, too.

 But, as Scarlett O'Hara famously said, "I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow."

And speaking of decisions...

I've found myself thinking a lot about Harper's ashes lately. For a long time, they haunted me. I hated having them in the house. Every week or two, I would beg Lou to make the time, to find a sitter, so we could go and scatter them. Have done with it. But somehow we never managed to make it work.

In a couple of weeks, they'll be dedicating Harper's tree and cobblestone at the hospice center. I always thought we should scatter her ashes before that.

But now that we're getting closer, I find myself holding back. I think about keeping them. I think about them being some tangible piece of Harper that I get to keep. Or I think about waiting until Shea is old enough to join us in scattering them, to appreciate the significance of what we're doing. I don't really understand my change of heart. It just is what it is.

At a party a few weeks ago, I found myself telling a perfect stranger about Harper. She asked about whether we had kids. And persisted in that line of questioning - are you planning on having more?; I have three boys, and the sibling thing is so great, do you think your son would like a sibling?; how much space are you trying for between them?

Eventually I told her. "We actually had another child, a daughter," I said. "She died in May."

"I'm so sorry," she said. "I understand." It turned out she did: she'd had a child who died at 14 months old.

"I don't feel the need to tell people about it," Lou said, after I recounted the conversation. "I don't feel like it's the business of people I don't know."

There reaches a point, I told him, where it feels weird not to mention her. Like I'm denying her existence. Or maybe just denying part of who I now am.

But sometimes I hold my tongue. Like yesterday, when a beaming colleague showed me picture after picture of her grandaughter, born just a couple of days after Harper. I looked at the pictures and thought about how Harper would have been the same age, but I had no pictures to share, no stories to tell, benchmarks to mark.

"Isn't she beautiful?", my colleague exclaimed.

Yes, yes, she was.