Georgetown

For many years, I visited or lived in DC and never went to Georgetown. Difficult to get to, hard to park, full of high-end stores and mediocre restaurants. I just did not spend a lot of time there.

Even when I started teaching at Georgetown, my visits consisted of driving to my corner of campus and heading straight to my classroom. No passing Go. No collecting $200. Not getting to know the area at all.

Harper changed all that.

Between the 2-3 time per week appointments and the intense two and half week period of practically living in the hospital and seeing a therapist nearby, I got to know the hospital, campus, and surrounding neighborhood pretty well. I know the shortcuts, and can even give a bit of a campus tour.

My organization has our annual meeting at a hotel in Georgetown, and I realized as I drove back and forth, and took strolls outside during the breaks, just how many memories are triggered by Georgetown itself.

The early morning drives, the traffic choke points, the passing of stores - it brought back a lot of very visceral experiences. Enough to sting my eyes with tears.

I wonder if Georgetown will always feel that way?

The Perfect Memorial

In movies, funerals always seem to involve rain, grey skies. For our Harper bean, the weather is always flawless.

We dedicated your tree today, bean. It was a glorious day, full of sunshine, warmth, the support of family and friends. And your memorial could not have been more perfect. 

The thing is, I love your name. Unabashedly, wholeheartedly, enthusiastically love your name. We may have given you the short end of the stick when it came to genes, my love, but I think we gave you a name to match the perfection of today's blue skies. And while I was a skeptic about having a place where we could go and commemorate your life - that was more your daddy's thing - I will forever be grateful that your name has been carved in stone for time immortal. 

Your tree is also beautiful. I look forward to smelling the heady perfume of magnolia blossoms come springtime. I always wanted to dress you in girly things, little one, and magnolias are about as feminine as trees come. It's broad leaves will give you shade and flower petals will clothe you in beauty, year after year.

Although it cannot be captured in photos, your tree is in the corner of a lovely garden, at the edge of a steep grassy hill, surrounded by benches, and across from the cheerful burbling of a large koi pond. This was your brother's favorite part of the garden, and he spent most of his time there tickling the fish with a large leaf from your tree, giggling as they responded to the movement. 

For such a short existence, you touched many lives, little bean. It was clear from the number of friends who were there to lay roses beneath your tree. From the hugs and tears from stranger, staff and volunteers from hospice, moved by the story of the little baby who never made it home. 

There's a gorgeous full moon outside tonight. I'm wishing I could share it with you, Harper girl. Hopefully your stone is glowing silver in its light. 

I am glad that we'll have a beautiful place to visit with you, to show Shea when he's old enough to understand. But, in all honesty, I would rather have a baby. I really, really miss having a baby.

A big milestone

Six months ago today, our little bean was born. One of the worst days of my life, which seems like an awful thing to say about the day a child is born. Usually, that's the sort of thing people list as one of their "best days."

If she were alive (and healthy), today would be a day for, "Wow, I can't believe Harper is six months old already!" and messy morning cereal and Da-da-da-da-da.

My grief counselor cautioned me that six months might be hard. It's one of those milestone days that people struggle with. So far, I'm feeling OK. Recently, I've spent more time looking forwards than backwards. More time laughing than crying. But I still do think a lot about that shadow baby, the one that might have been, which Harper wasn't. Sometimes it feels like that ghost would have made my life better, but other times I realize my life is still very good, even without her there.

As Lou likes to say, "Don't forget you still have a boo." Indeed I do, and even at his whiniest, every day with Shea is fantastic.

Shea asked me what the word "panic" meant a couple of days ago (he heard Lou using the word). I tried to explain it, using as an example, "have you ever looked up and thought you were alone and felt very scared until you found mommy and daddy?"

His response, delivered in cheery excitement, was like something out of Hitchcock. "Yeah, like if Mommy and Daddy died, and you were lost in the forest, and you were all alone, and no one could find you, that's panic!"

If nothing else, the experience with Harper has given me lots of training in the dissonance between toddler words and emotional impact. I hugged him and told him he didn't have to worry about Mommy and Daddy dying, or being left alone. (I don't think he particularly is, but it made me feel better to say it.)

Then he said, "When baby Harper died, and she was very sick, she was panic."

That made me pause, as I wondered if Harper did feel fear, if those last moments of her life were panic inducing, or if she felt reassured that we were there.

"No," I told Shea, "Harper didn't have to be scared, because she knew we were there, and we loved her. She had a mommy and a daddy and a big brother who loved her. So I don't think she was panicked."

"Yeah," said Shea, giving me a big, happy squeeze, before running inside, on to the next exciting thing.

This weekend will be the dedication of Harper's tree and cobblestone at hospice. It makes me wonder if anything will ever feel like a final goodbye? Will there ever be a day, a moment in time, where I'm just completely at peace and not thinking about what could have been?

In any event, happy six months, Harper bean.

A holiday nobody wants

Today - October 15 - I have learned is National Pregnancy and Infant Loss Awareness Day. Of course, it took actually losing an infant myself to become aware the day existed, so maybe the campaign needs some work.

One website about the day stated it was for remembering "babies who were born asleep, or whom we carried but never met, or those we have held but could not take home, or the ones that made it whom and didn't stay."

Those we have held but could not take home.

A friend recently posted this quote by Conor Oberst, "I've cried, and you'd think I'd be better for it, but the sadness just sleeps, and it stays in my spine the rest of my life."

Yeah. That.

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.

5 months gone