The paper trail

I was reminded again today that given she only lived for 17 days, Harper had an extraordinary impact. At least, in terms of the paper trail she left behind.

Shea has finally succumbed to the nasty cold virus from which Lou and I have been suffering for the past two weeks, so stayed home sick today. While he was quietly coloring at the table, I decided to use the opportunity to clean out our mail bin.

Mail bin is the misnomer we give to the large wooden box where we toss assorted pieces of paper, notebooks, etc. that we don't want to deal with right now. It reaches a point of un-manageability every few months, and I purge it to restore order, filing the important papers, recycling the ones that just don't matter anymore, deciding how much to keep of the avalanche of Shea's artwork, debating over whether we'll ever use that coupon, often followed by shrugging and tossing it back into the box.

This morning, the mail bin was still full of Harper. 

Painful items, things that made me smile, lots of papery memories I had given no thought to for many weeks that had somehow been tossed into the bin, because I wasn't ready to deal with them yet.

Sonogram photos. So many, many sonogram photos. When you're going for three ultrasounds per week, they end up everywhere - I run into them all over the house and the mail bin had its fair share.

Sympathy cards that hadn't made it to the basket on the bookshelf  in our guest room that has declared itself the Altar of Harper. Insurance summaries. Medical information.. Notes from hospice. Resources on grieving. Thank you notes. Newborn information packet from Georgetown. A baby book, with only the family tree potions filled out. 

Harper's death certificate.

It reminded me we still have not ordered her birth certificate. It doesn't seem high on the priority list. Still, it seems like there should be a record that she was alive, not just that she died. 

It's amazing that one tiny baby, less than five pounds, can generate ten or more times her body weight in paper. But since it is all I have left of her, I file it away. Out of the mail bin. To another place of limbo, because I'm still not ready to deal with much of it.

News stories that never would have caught my eye before also leap out at me now, thanks to our experience with Harper.

Like this one, about how Germany is now offering a third option for gender on birth certificates, for babies born like Harper, chromosomally of one gender but anatomically of another. It reminded me of her little hospital I.D. band, listing gender as U for unknown.

Or this story in the Washington Post, about how a merger of funeral homes could threaten a deal for inexpensive Jewish funerals in the Washington area. We know all about that deal, Lou and I; we learned of it when seeking advice from the rabbi on what to do with Harper's remains. Prior to that, I had no idea the Jewish Funeral Practices of Greater Washington even existed. 

Noticing these things makes me want to nudge someone and say, "Hey, did you see this?" But except for Lou, they'd have very little relevance to anyone other than me. One more way in which losing Harper sometimes makes me feel very alone. 

There is a Calvin and Hobbes to match every emotion...

Hard conversations. And elephants.

"I want to 'nuggle," Shea tells me, creeping out of bed to curl up in my lap in the glider rocker.

This is a delaying tactic,  designed to create a few minutes reprieve from bedtime. But it is something I enjoy, so I let it slide.

"Why did you paint elephants on the walls?" he asks as we rock.

He has lived in this room his entire life, walls unchanged,  but has only recently noticed the decor.

"I wanted to make the room beautiful for you,  for my baby, " I explained.  "I did that when you were a baby in my belly,  because I thought you might like it."

"Oh," he responds. And we rock silently,  cuddling, for a few minutes more.

His eyes study the room.

"Why didn't baby Harper use her crib?" he asks. The crib sits in the corner,  still made up with brand new sheets,  cheerful blue and green elephants. Filled with gifts, the high tech baby monitor recommended by the heart baby boards,  the unfulfilled quilts.

"Baby Harper never came home to use her crib, " I reminded him gently.  "She died at the hospital before we could bring her home. She was very sick."

"I wish baby Harper had come home, " he said, sounding wistful,  and I have to fight the urge to ask leading questions in order to hear answers I need to hear more than he needs to say. Do you miss Harper?  Do you miss your sister?  Are you sad that she's gone?

Then he caught me by surprise, "Why do people die? What is dying?"

Not why did Harper die. Why do other people die. These were bigger questions, and for the first time myself wondering what was going on in that curly head.

"Well," I began,  "people die when their bodies stop working."

"Why do they stop working?"

"Usually it's because people have lived a very long time and they're very old, " I told him. "But in Harper's case it was because she was very sick."

Shea thought about this.  "Baby Harper was very old?"

"No," I told him.  "She was very sick. She was born that way, and she couldn't get better. Her body didn't work the right way."

"Yeah," he says. "The hospital couldn't make her better."

Shea was silent for another moment. Then,  "How did you get all the way up there to paint those elephants?"

These are hard conversations to have with a three year old. Not hard for him. Hard for me. They are impossible to get used to. I don't feel unprepared, and I can handle the questions calmly,  matter of factly. But it makes me sad that I have to have these conversations at all.

Sad is still present in the day to day.  Social media reminders of what I don't have and others do. Reminders of Harper's name in unexpected places. Although it also comforting to be reminded of her.

Her spirit is with us - camping in WV, near Seneca Rocks

Yesterday, we began to plan a vacation to Australia. For the first time since Harper was born, I felt pure, unadulterated joy and excitement. Distraction from the sad, something to dream about besides rainbows. It was a Big Thing, in true Aussie spirit. A place I've wanted to visit for many years. An adventure with my family, something to plan and look forward to. Even with the niggling guilt of knowing this trip would not be happening had Harper lived. That this excitement comes at the expense of my daughter's death. Kangaroos with  a healthy side of regret. 

Then there's the well meaning congratulations and inquiries about the baby.

These don't get easier. Running into colleagues and acquaintances. Casual exclamations of "Congratulations! I haven't seen you, how are you? How's the baby? Boy or girl? Are you getting any sleep?" Etc. Etc. Etc.

Inevitably followed by the supremely awkward moment of explaining I had a baby girl, but she passed away in May. The explanation part has gotten better. I'm a long way from tears when I do that, and I've perfected the gentle, regretful smile. 

But always it's the same. The crushed expression, the shock, the hasty apologies and hugs. The wave of guilt for having made someone else feel bad about making me feel bad. The reassurances ("It's OK, you couldn't have known.") And the rocky transition to neutral subjects.

But it changes everything. Because I know there are unanswered questions. I would certainly have them, were the positions reversed. What happened? How did she die? When did this happen? Maybe assumptions being made. Stillbirth. SIDS. A terrible accident. Not wanting to ask for fear of stepping on social or professional conventions.

The thing is, I'd rather the questions were asked. Because once the jarring reminder occurs, I'd rather talk about it. I'd rather share Harper's story, have an opportunity to say her name, instead of leaving her hovering there, unspoken, unacknowledged, as if neither her life nor the awkward moment had happened. The unanswered questions fester, like an open wound, and I begin to feel restless and sad. The moment is not so bad; the aftermath is devastating. 

I need the release of talking about her and hate that the awkwardness barricades that from happening.

I had a baby girl. Her name was Harper. She was born with Smith-Lemli-Opitz syndrome, a rare genetic disorder that prevents the production of cholesterol. She died at 17 days old. We're doing OK. 

There. Was that so hard? 

When blogging doesn't help

Last night was a bad night. The worst in quite some time. I don't know why. There was no rhyme or reason to it. No triggering event. It just happened.

("Feel what you feel, " says Lou. "It's OK.")

Sad should be sleepy,  tired. I think of words like depression and sorrow, and I imagine weighty lethargy,  not being able to get out of bed. Heaviness,  stillness,  the quicksand experienced just before waking.

That's not my sadness. I am wired sad. Manic. Awake. Panicky. Anxious.

I worry. I pace. I do laundry. I write. I cry.

I cannot sleep.

Usually,  writing helps. It's where I channel the jittery energy. Allow the sadness to become grounded. Lets the exhaustion be absorbed,  so I can finally shut my tired eyes.

Last night it didn't help. So I woke my husband up at 3 am and sobbed in his arms. It was a nonsensical litany of sadness.

I couldn't save Harper. I lost patience with Shea. I can still feel the baby kick. I don't want to celebrate holidays. We need to scatter Harper's ashes. I am just so tired. I am just so sad and I don't know why. I hate that I can't control how or when it hits me. I am just. So. Sad. I can't stop crying. I am so sorry.

And Lou helped. Being held,  having him whisper equally nonsensical reassurances. It didn't make me less sad,  but it helped me stop crying. Made the dark less dark,  less hectic.  Finally,  I could sleep.

Dread

It's 2 AM. I can't sleep, and I can't stop crying, and I don't really know why.

Maybe the advantage of the extraordinary circumstance of losing a child is that you never really need a reason for crying. It's a get-out-of-jail-free card for shameless weeping, day or night.

This afternoon, we had a family nap. It was lovely. I slept, warm and cozy, our boy snuggled up between us, solid and soft. His sweaty curly head on my arm. We felt like a family, whole, not a piece missing.

I may be paying for that nap now, sleep patterns disrupted. The bed doesn't feel cozy now, but oppressive and writing this is the only thing keeping me from scooping Shea out of his own bed in a desperate attempt to recapture that snuggly sleepiness.

It is a night full of dread without cause. Of looking ahead in the framework of Harper's loss and feeling anxious. Things I should be looking forward to - family holidays, celebrations with friends, meeting new babies for the first time - are filling me with panic. Visions of occasions feel crowded, noisy, suffocating.

Normal celebrations feel too hard. Not enough room there for the sadness I need to feel. Silly to even be thinking of them right now. Months and months will go by. Who knows how I'll even feel next week? But right now, in this very, very dark night, I want to stay in the comfort of my own home. In the cocoon of that family nap.

I just want to wake up less tired than the day before.

"We should get a new baby," Shea observed over dinner tonight. He paused. "I think we should get two."

That made me smile. And made me think how exhausting that would really be.

Funny, how there's a sleeplessness you can look forward to, even as this one fills me with pain.

Month three

Today is the third anniversary of my daughter's death. Three months ago today,  our Harper bean died.

Today,  I feel a need to repeat that over and over. To tell random strangers on the Metro (I didn't really do that). To shout it as I walk down the street. Come to think of it, that last idea has some merit - between the homeless, those marching on strike,  and the protesters,  shouting in downtown DC would hardly attract much attention....

I have to repeat it because it's so hard to believe. It feels like forever ago. It feels like yesterday. I can feel her in my arms,  I struggle to remember what she looked like.

Time continues to creep by. As the old soap opera said,  like sands in the hourglass. Normal days - and there are many of them - continue to envoke guilt,  as if I'm betraying Harper by living. A stupid emotion,  I know intellectually,  but what can you do?  It is what it is.

I try to look ahead. Try to think about another baby. I am too old, too impatient,  too much of a control freak to just leave it to chance,  so I have begun a love-hate relatIonship with my ovulation monitor. Another low fertility day,  another 24 hours until the next result. Tick, tick, tick...

It would be about now I'd be returning from maternity leave. Doing transitions to daycare. Pumping at the office. Or what of Harper had survived with SLOS? That's a life I can't even imagine.

And now I wonder when I will begin to stop counting.

"That's our baby, " Shea said proudly,  pointing to the family picture,  a remnant of the memorial service,  in our dining room. "Her name was Harper. But she died."

That's our baby.

Musings on the Mouse

So, it may have been a little naive to think our visit to the House the Mouse Built would be entirely untouched by our loss.

"So we have Lou, Carrie, Shea, and Baby W. staying with us?," the cheerful Disney employee chirped to us as we checked in.

"Um, no, there's no baby," Lou had to reply awkwardly.

Ooof. Like a punch to the stomach.

He'd made the reservation months ago, and optimistically added all of us in hopes we would be able to bring our little heart baby down to Disney. Not surprisingly, with all that has gone on, it hadn't occurred to him to cancel it.

I had actually noticed it earlier, online, when making dining reservations, but in what was probably a state of denial, I somehow thought Shea had gotten added twice, as Lou and I fumbled in connecting our Disney accounts and ended up with redundancies that we needed to straighten out.

It wasn't until that painful welcome at the hotel that it occurred to me that Baby W. was Harper. And that realization came as a flash of inexorable and unexpected hurt.

There's no baby with us.

Nearly everyone at Disney World is sporting some sort of button. "First Time Visitor," they read. Or "Celebrating!" a birthday, anniversary, event. "Happily Ever After!" proclaims the buttons on the newlyweds and honeymooners. The buttons prompt Disney employees to note your occasion, to wish you well, to burst into song.

There are no buttons for mourning. No way to acknowledge the First Family Vacation Since Losing a Child. No way to plead, please, make sure this trip is happy, because we've had our fill of sad. 

Reminders appeared and disappeared throughout the trip, like will o'wisps caught from the corner of an eye. Reminders that were sometimes hurtful, but also beautiful.

Like discovering there was a place called Harper's Mill in the middle of the Magic Kingdom. I loved that.

With us in spirit...

Lou carelessly commenting, upon seeing one of many tiny girls dolled up like a Disney princess, "We don't have a little princess..." Ouch. Another tear inducing gut blow.

The gorgeous double rainbow that appeared outside our window, a symbol of hope for the future.

Some of the most poignant reminders came, oddly enough, during a long wait for a water park ride, a family white water raft slide. The water park was packed that day, the lines long and hot. This particular slide was one that was handicapped accessible and a few folks in front of us was a gentleman in a wheel chair.

The wheelchair had to be strapped on to its own raft, send down the slide, and received on the bottom before its user could splash down the slope. It seemed to take forever, transforming a scorching 30 minute wait to closer to an hour. It was annoying. It was frustrating.

"But," I noted to Lou, "if things had gone differently with Harper, that could have been us someday." He agreed, and our little bean taught us another lesson in patience.

Eventually our turn came. As a family of three, we were made to wait to one side; it required a minimum of four riders, so we needed to join another group.

We stood and watched as family after family of four went ahead and boarded.

We were a family of four, I found myself thinking. It felt like such a scathing condemnation that we no longer were. Silly, really, since it's not like an infant could have joined us. But I had already been thinking about Harper, and this was the dark place my thoughts went.

Something must have shown on my face, because the attendant chided me, in a most un-Disney fashion, "You need to learn to be more patient."

I bit my tongue.

But the most beautiful reminder was this one:

My boy. Loving every minute of his trip. Squealing in delight down that rafting ride. Pointing out every single doll in It's a Small World ("Mommy, look, look!") Seeing Peter Pan for the first time and yelling "Crocodile!" every time it appeared. Hugging Mickey with every ounce of exuberance in his little body.

At Harper's memorial service we said that her loss has made us appreciate how lucky we are to have Shea. That is still a gift she gives to us every day.

On the way home, browsing through Skymall, a bracelet caught my eye. "It is What it Is" it said. I thought about how many times I've found myself using that phrase in the past three months. (Has it really only been three months?!?)

Part of me longs to buy it. Because that phrase helps get me through some days. Some moments. But my wrist is getting crowded. And all the jewelry in the world doesn't provide enough armor to deflect those sharp barbs that come out of nowhere. It is what it is.