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.

Five months gone...

Dear Harper bean,

Today we should have been celebrating the 5 month mark of your birth.

I want to say that after 5 months, it's all better. Most days it is.

But then there are Moments.

Like running away to cry after sitting next to a newborn baby (although, I am very happy to say that it is only the newbornest of newborns that triggers tears now; older babies bring me nothing but joy once again.) Or the trickling continuation of "How's the baby?" inquiries I still get now and then. The damn email reminders from Babycenter ("Is your baby sitting up?" "Thinking about teething") that I can't seem to unsubscribe, too. Being excluded from a baby shower, presumably because well-meaning friends are worried about hurting my feelings, but only feeling isolated and sad as a result. The nights when I still feel ghostly baby kicks or have flashbacks to the worst memories of the hospital. I suspect there will always be Moments.

Today, Harper bean, I told your story to a Congressman named Harper. Gregg Harper, a Republican from Mississippi. Although I expect we're politically worlds apart, he did understand; he has a son with Fragile X and knows the pain of an unexpected genetic diagnosis when all you were anticipating was a baby.

"My daughter says she's going to name her child Harper," he told me. "Whether it's a boy or girl."

It is a unisex name, I agreed, sparing him the story of why a unisex name was so important in your case.

As always, it felt liberating to tell your story. I'd rather share my grief and celebrate your life than pretend I don't see your ghost. It seemed like a good way to spend that five month birthday.

Your brother has not forgotten you either. A neighbor recently had an inflatable bounce house at their birthday party. Shea is obsessed now with having one for his next birthday.

"When I have my bounce house party...." is a frequently heard phrase in our house now.

"When I have my bounce house party," Shea began last week, as he and I ate dinner. "I think we should put up lots of pictures of baby Harper so that all my friends could come to my bounce house party and see her."

I stared at him for a moment, tearing up and trying to resist the urge to snatch him and hug the breath out of him. "Shea," I said slowly, "I think that is a lovely idea."

If there is a heaven, I hope it has a bounce house for you, my love.

Memories

On Friday, I went to another baby's service. I held it together in public, made it into my car, and then burst into tears. 

I'm not sorry I went. If nothing else, Harper has taught me that every hug matters. Every willing ear to tell a sad story or recount happy memories to is important. 

But it shook loose memories that lay sleeping. The night Harper died, we left the hospital in total numbness. We'd expected to be there for the night, instead we left barely two hours after we'd arrived, leaving our baby girl behind, no longer breathing. 

We'd forgotten to validate our parking.

Here's the thing about Georgetown Hospital. You can't go two feet without someone offering to validate your parking. Our visiting friends commented on it, the almost creepy nature of the friendly staff, always ready to give you that magic sticker. And it's necessary, because parking with validation is totally reasonable, but without it, totally exorbitant.

That night, the parking attendant noted we had no validation and asked for the full price. We stared at him with red, blurry eyes. "Please, man," Lou told him, "Our baby just died."

"What?", the attendant said.

"Our baby just died," Lou told him, voice catching. I started sobbing. 

Clearly flustered, the attendant said, "OK, OK, wait a minute..." He charged us the lower price. 

I had completely forgotten about that. It jarred other memories: the phone calls on the car ride home, to tell our parents she was gone. The very sweet speech therapist in the NICU, still giving me advice on improving Harper's suck, even as she was clearly in her last few days. Lou crying while holding her, moments after she was gone, telling her he was sorry. Running on the treadmill through the dull pain of the healing c-section, because it was the only thing I could think to do. The smell of her scalp and the tickley feel of her downy fuzz when I kissed her head.

Part of me likes it better when these memories are sleeping. They make me cry. They physically hurt. They keep me awake at night. 

But they are all I have of the baby I lost. And it scares me to think they might ever be lost. 

Tishri

Dear Harper,

The bushes we planted for you are dying, and I've run out of ways to care for them. So I watch the leaves wilt, and turn brown, and hope they will be renewed when spring comes. I'm sorry, little one. I feel this is another way in which I failed you.

We visited your grandma this weekend and as we drove in the car, she pointed out sights and scenes to keep Shea entertained. "What are they building?" he asked. "A new hospital," she told him.

Apparently Shea has triggers, too. "Our baby died," he told my mom.

Rosh Hanshanah begins tomorrow. The 5 month anniversary of your death is the day after. Sweetness and family, loss and sorrow. Already the week has begun with the news of another baby dying, the family member of a dear friend, and my heart breaks to know that someone else has to join the ranks of those who have lost a child.

Rosh Hashanah is a time to look back at the mistakes of the previous year. Harper bean, I've been doing a lot of thinking about genetics lately, trying to root for the 75% chance of having a healthy, SLOS-free child. And I'm finding it makes me feel tremendously guilty. What if we waited another month? What if it wasn't that egg, that sperm, that embryo? You? Would I be worse off for not having known you? Or better for it, up nursing rather than sitting in the oppressive silence of our sleeping house?

(Every time my mind goes down these lines about the wrong egg and wrong sperm, it makes me think of the scene from the movie, Contagion, "Somewhere in the world, the wrong pig met up with the wrong bat." Great line. Makes me chuckle a little.)

"She was beautiful," a friend recently told me about you.

My beautiful baby girl.

What would life had been like if we'd waited another month? What if we choose wrong again?

What do I do if the azaleas die? Can you just plant new ones as if the bushes themselves don't matter?

How can I stop failing you?

Wishing you were here to celebrate the New Year, bean. L'shanah tovah.