Still counting

Ten weeks ago today I had a baby. Fifty three days ago I lost her. Sometimes it is all just too much. Ready for Thursdays and Sundays to be just days again.

Triggers

Lou and I have a lot in common. Including, it turns out, our SLOS mutation. The c.964-1 G>C slice mutation. This is what we learned today, meeting with the geneticist at Georgetown, what we'll need to test for in our (hopefully) future baby. Harper was homozygous. If only there were bonus points for consistency.

Going back to Georgetown is still hard. It makes me feel shaky and anxious. The geneticists' determination to  give Lou the full Genetics 101 lecture didn't help. "I'm sure your wife can explain this to you better than I can," she chuckled several times. I had to bite my tongue to keep from saying, well, why not just let us leave so we can do that?

But maybe the lecture was good. It allowed me to tune out and begin to feel numb, away from my first instinct to cry and just run out of the hospital.

Last night, another SLOS baby died. A tiny girl, who looked so much like Harper, passed away in her parents arms. I copied and sent Lou the post her parents wrote on their FB page about her death. "This looks very familiar," I told him. We could have written it.

There was no time today to process that news. Too many meetings. Too many to dos. Not enough time to shut my office door and cry for a baby girl I didn't really know but who resurfaced so many memories that had barely begun to lie flat. So maybe my shakiness had begun even before I walked through the hospital's front door.

I've been reading a lot about grief. I want to say that it's some sort of driving need to understand the way I'm feeling, but I really think it's some form of self-abuse. Like picking at a wound. Or probing a sore tooth. Maybe it's just a way to feel less alone in my experience.

In any event, books and articles about mourning, loss, grief have a vocabulary all their own. In my head, I think of it as grieftalk.

One recurring theme in grieftalk is the concept of triggers. When people post items on discussion boards about bad days they've been having, they often spell out TRIGGER in capital letters, the way you might put SPOILER ALERT when talking about a book or TV show.

Triggers are the things and experiences that appear to interrupt your everyday existence to spend you spiraling back into grief. In my case, they make me cry, because I'm a cryer.

I live surrounded by wannabe triggers, but I've grown immune to them. The bassinet is still set up (our cat has taken to napping in the storage baskets), the crib still has clean sheets and is filled with soft baby clothes and blankets. A bag of maternity clothes is waiting to be taken to the basement for storage.

Triggers are a pain in the ass. As far as I'm concerned, they are the worse part of the grieving process because they, by their very definition, trigger absolute loss of control. I don't care if that's OK and normal and has no set timeline (grieftalk, grieftalk, grieftalk), I don't like it. I don't like that one minute I'm fine and the next I'm not. Not my thing.

Triggers can be obvious - newborn babies, invitations to baby showers, pictures of Harper, pictures of other SLO babies.

Triggers can be geographical - places that I last experienced while pregnant are big triggers for me.

Triggers can be complicated - like experiencing happy events that suddenly seem overwhelming and wrong because how the hell can anyone be happy when everything has gone so horribly wrong?

Happy triggers are the worst kind. The unintentional pain caused by others. There's no good solution to this. Others are either totally oblivious or awkwardly trying to change their behavior to avoid causing you pain. There's the sense that one's happiness shouldn't come at the expense of my pain. But I actually think it should work the other way - my pain shouldn't diminish another's happiness. So, I sneak off to cry. But at least those I love are happy, I hope.

The thing is, obvious triggers don't always set me off. Or there's a threshold point associated with them that I can never predict, much like I can use a sunscreen for weeks or months until one day it suddenly begins to make me break out. Allergic reactions are much like triggers. Time with a baby or at a happy event is totally fine, until suddenly it isn't. The pain starts, the world gets darker, it becomes hard to breathe.

This past weekend was full of obvious triggers, and geographical triggers, and complicated triggers. I am feeling haunted by an adorable pair of colorful baby pajamas, with a little lizard on the lapel and bugs on the footies, that I really wanted to buy. I could have bought them for someone else's baby, I told Lou. But I didn't want that. I wanted them for my baby. Only I don't have one.

TRIGGER.

Maybe tonight the numbness will wear off, and I can shed some tears for baby Graycen, who died today. And even more so for her mommy, whose journey, as I know too well, has just begun.

Losing London

Last week, I was awoken near 6 AM by a scrambling, scratching sound from downstairs. I woke Lou, "Do you hear that? Do you understand what it is?" He sleepily replied, "It's London." I woke him not because I didn't know, but because the noise signaled a need for a conversation neither of us wants to have.

My London girl, for the first time, did not make it up the stairs  to sleep beside our bed. She got caught on the hard wood floor at the bottom of the stairs and could not gain the traction to stand up.

I went down to try to help her stand. She resisted; London has always hated being picked up or manhandled. One of the few thing that has not changed as she's grown older.

I never, ever wanted to be someone who let my dog live too long. But now we are faced with an actual decision, and I can barely bring myself to think about it.

We had a pact, I reminder her. You weren't supposed to get old.

Almost sixteen years ago I saw an ad in the Centre Daily Times for a litter of puppies, blue eyed, mutts born of an AKC registered Siberian Husky. I was ready to fulfill my lifelong dream of having a dog of my own - I called the number in the ad and could barely understand the woman who answered, so think was her Central PA patois. Finally, I figured out she was in McAlevy's Fort, a place I'd never heard of and would never visit again.

I got terribly lost going to find my puppy. It was deep in dark, rural Pennsylvania, where I'd only lived a few months. I had to stop and call for directions many times - in an age before cell phones - including stopping at a stranger's house and begging use of a phone. I chose a house that had the most Christmas lights, figuring psycho murderers were unlikely to be so festive. I think the old couple there was more scared of me than I of them, and it took me a few minutes to remember how to use their rotary dial telephone.

But I did manage to pick her up, my London girl, the only dark haired pup in a pile of blue-eyed Border Collie look alikes. Her mother howled a full-throated wolf song as we left. I tried to put the tiny little ball of fur in the back seat, but she cried until I ended up driving with her in my lap, and from that moment on I was head over heels in love.

As I stroked her head, we remembered together. Remember, London, how scared you were that first night, so I slept with you on the floor? Remember our first time getting separated while hiking, me spending hours crying and calling your name, only to stumble back to the car to find you waiting for me? How you ran, crying like a puppy with excitement when you caught sight of me, and how the car was covered with muddy paw prints from you anxiously jumping at the doors to try to get in? Remember the morning you decided, with no provocation, that the throw pillows on the couch had to go, and I awoke to find you proudly settled in a sea of fluff? How you chewed the ears on Lou's childhood teddy bear, an act for which he's never totally forgiven you? The ridiculous songs I've sung to you, throughout the years, silly songs I'd make up with your name, so you would know they were about you? How scared you were of open deck stairs, and how you still walk around to avoid grates on the sidewalk? Or how, when I cried, you would press yourself up against me and put your head in my lap to try to make me feel better?

She was never an easy puppy, my London girl. Her energy and sharp intelligence manifested itself in chaos and destructiveness, early on, and she was impossible to tire out. Long hours spent hiking up and down hilly trails would result in tired humans and a "Let's go again!" smile from the dog. She was never more Husky than when it snowed, and she would wake me up at dawn any snowy day, excited to run mad circles through the drifts, stick her head in the piles, and pounce madly through the snow. I felt bad moving her to DC, where snowy winters are few and far between, and it makes me sad that for the past couple of years she hasn't seemed as excited about our visits to the snowy climes of Upstate NY. We always hoped to take her to Colorado, where she could run far and free in the snow. I regret never having done that.

As crazy as those early days were, she settled into the World's Best Dog. For years, those who knew her puppy insanity would marvel at how good a dog she'd become. Smart enough to do agility and learn tricks. Kind enough to be trusted with anyone. With a guilty enough conscience that she seldom got into trouble - I used to brag you could leave a coffee table full of hors d'oeuvres alone in a room with her and she wouldn't touch them. Most of the time that was true.

She was there for me in some of my loneliest moments. And that was when I made her promise she would never grown old.

But she did. And while most of her decline has been frustrating backslide we have learned to live with - slow, dragging walks; fecal incontinence; insatiable food focus; light snapping as her blind eyes perceive hands near her face to mean food - up until the past couple of weeks, she seemed happy. Excited for her supper. Coming to us for petting with that big, happy London girl grin.

Now she doesn't seem to enjoy anything. "Maybe it was just a bad morning," Lou said. But I don't think so, and I miss the days when I could make both London and myself feel better by curling up next to her, cuddling, on the floor. She doesn't seem to want even that anymore.

Denver, knows, I think. He's begun to attack and try to dominate London in a way we've never seen before. As wolves attack weakened or dying members of the pack. We yell at him, we rescue her. But maybe he is smarter than we.

We have returned from our weekend away, and London is struggling to even stand. "It's time," Lou says. I pet her soft head, which suddenly seems so gray, and look into her dimming eyes.

It's one thing to say you'll know when the time has come to make the decision to put your dog down. It is quite another to actually make it. To say the words. To make the phone call.

Especially now. There has been too much death and dying in the past month. I don't know that I can handle another box of ashes coming home. Although, ironically, I feel better equipped to disperse London's ashes than I do Harper's.

My family is getting smaller and smaller. And I'm feeling number and number.

This was a hard weekend, a sad weekend, for many, many reasons. A weekend of many sneakaways to cry (thank goodness for waterproof mascara!).

I really don't want to say goodbye to my London girl.

"What do we do?" I asked Lou. Call the vet, he said. Tomorrow.

Summer

"You seem a little sad," Lou observed.

Harper sad, I told him. Baby sad.

Today is the first day of summer,  and it stretches out with plans that have all been reworked for lack of a baby.

This weekend is a wedding near New Hope, a romantic getaway at a beautiful B&B, that we weren't supposed to be staying at because I didn't want to leave the baby for that long. Except now there is no baby.

Last time we were in New Hope I was pregnant. Lou and I discovered alcohol free wine and used a picture of us toasting with it to announce we were having a baby.

Every summer plan,  every moment to look forward to, is shadowed by the knowledge that we are only doing this because Harper died. Because without a baby,  without having to worry about  whether this or that is ok before heart surgery,  or whether we can handle it with two kids,  we can now go. It serves up every moment of happy with a side of sad.

I cried again two nights ago,  sobbing for no good reason. "It's ok," Lou tried to soothe me. "It's totally normal."

I lashed out at him. I'm not worried about not being normal. I am just tired of being sad. 

It's a beautiful summer day,  and I want nothing more than to enjoy it.

I have an email in my inbox,  from a colleague I haven't seen a while and don't know very well. "How's work?" it says. "And the baby?" I have not been able to bring myself to reply.

Two months

Harper would have been two months old today.

At almost exactly two months,  we took Shea on his first airplane trip. He got to experience the beach for the first time. To swim in a swimming pool. He smiled constantly. He still does.

Harper probably wouldn't have been able to do any of that.

I sometimes feel I am mourning two babies. Harper,  the tiny little girl with the quirky extra finger who I fell in love with in spite of myself. And the baby who wasn't,  heart defect,  club feet, and all, the mostly healthy baby we were expecting.

It is that baby who makes me sad when I see ultrasound pictures. When I encounter newborns or pregnant women. When I look at the soft baby things,  unused,  sitting in the nursery crib.

I need to remind myself sometimes of how sick Harper really was. How sick she would have been if she had survived. She has reached such mythic proportions in our minds, and I loved her desperately,  but she would have completely altered the fabric of our universe. Harper had SLOS, and it is a no joking around disease.

I read the posts of the other SLOS families. Posts about clogged feeding tubes, screaming fits,  and medical specialists,  and I wonder how we would have handled it all. Would I still have been just as sad as I am now?  Still mourning the baby that wasn't? 

Then I read the excited posts of accomplishments, see the photos of beatific smiles,  meet the most amazing parents. And I don't know.

A moot point,  in any event.

Happy two months,  Harper bean. I do still love you.

The giant wait

I hate my clothes. Every single day I have to find something to wear and every day - Every. Single. Morning. - nothing fits. And every day - Every.  Day.  - it serves to remind me of what I have lost.

Stupid belly.

It is the ultimate adding of insult to injury that on top of losing a baby you also feel fat.

It takes time,  friends soothe. The baby weight will come off. You need to give it time.

Funny how that's what they say about grieving,  too. It takes time. It will get better.

The thing is, I don't want to give it time. I am not a patient person.

I am waiting for my clothes to fit. Waiting for another baby. Waiting to feel better.

My life has become a Giant Wait.

Or maybe a giant weight is more appropriate. In ever so many ways.

Let's go, Nats!

It was a day of lovely Harper-related Nats surprises!

Throughout my pregnancy, we joked that if the baby was a boy we'd name him Bryce and a girl we'd name her Harper. Like Shea, Harper began attending Washington Nationals games in utero, by virtue of her parents' season tickets. Two weeks before her birth, we attended the Nats season opener and watched Bryce Harper kick off the season with two home runs. Literally batting a thousand. Baby Harper kicked me silly. 

Shea's early and continuous exposure to the Nats may have created a monster. He loves to play baseball and he recited the Nats lineup as he comes to bat, assuming the identity of a Nats player at the plate. "Jayson Werth. Bryce Harper. Ryan Zimmerman. Ian Desmond," he announces in his high pitched little boy voice. In between innings he uses his wheeled popper toy to "clean the field" that is the carpet in our basement. 

As I unpacked and cleaned Shea's baby clothes in anticipation of our baby's arrival, I was especially excited to unpack his tiny little Nats onesies. He went to his first ballgame at just a few weeks old, and I was excited to have that experience with his sibling, too, to watch big brother Shea teach "new baby" about the President's race and about Bryce Harper, his favorite player.

That very last game during my pregnancy was on April 1st and leaving was rough - we were taking public transit, it was crowded, and we could not get a train or bus to save our life. Lou kept dragging us block after block, and I was utterly miserable. I was just so ready to not be pregnant anymore. 

Going to baseball games now comes with a bittersweet twinge of pain. It is hard to be surrounded by a sea of backs reading Harper. It makes it absolutely impossible to forget, even for a moment, her loss. That has it's pros and cons.

"Maybe I should wear a Harper jersey," I told Lou. "Do you think we could find someway to add "bean" to it?"

Today my darling husband gave me this:

I can't wait to wear it to our next game.

An envelop from the Nationals arrived in the mail today. Not an unusual occurrence. As season ticket holders, we get a lot of Nats mail. But this one was addressed to all three of us - Lou, Carrie and Shea - which was odd. Curious, I opened it.

I was stunned to find a condolence letter from the Nationals on the loss of Harper. Our wonderful friend, Nate, had told them our story, and they were actually kind enough to write.

We'll never get to take Harper to a game. But the shirt, the letter, the acknowledgment of her existence... maybe it will make that sea of Harper shirts bring in a tide of nothing but joy one day. And maybe I'll get to use that Nats onesie again one day, after all. 

Let's go, Nats! (They're tied as I type this - maybe all of our good Nats karma today will help lead them to victory....)

Going public

Dear Harper bean,

I think you may have been proud of your mommy today, bean. I talked about your in front of a crowded room of people, and boy, was it hard! Not the talking in front of a big group of people - I do that all the time - but sharing you with them without bursting into tears.

("I didn't know you were going to do that," a colleague said. Truthfully, I wasn't even sure I was going to do it until the moment it happened...)

Members of the audience, who were there to hear about the economic impact of the Human Genome Project and were probably a little startled to hear their MC utter the words "Eight weeks ago I gave birth to a beautiful baby girl we named Harper. Seventeen days later she died", told me afterwards that I was brave. But I don't think that's true. Talking about you isn't scary, it's a release - the difficulty is not in saying the words but in holding together my tenuous emotional control as I say them.

You will be happy to know, Harper, that your public debut was in a pretty classy venue at the U.S. Capitol, on a gorgeous day worthy of a Frank Capra movie set. Only the best for you, bean!

Besides, who am I to ask other parents and their children, patients and their families, to share their stories if I am unwilling to share mine? That would be a hypocrisy I couldn't live with. Although I admit to jealousy that other stories have happier endings.

I crave happy endings. Facebook is causing me tremendous, unintentional pain these days, little bean, because it is full of happy baby pictures, happy baby news, happy baby stories. But I also yearn for those, I can't look away, because I need that hope that happy endings still exist. That we'll get to be the ones someday posting those pictures again.

Today, I learned of another, new SLOS family whose newborn daughter looks a lot like you did, bean. And my heart ached and ached in empathy for their difficult journey. It seems like yesterday we were posting nearly identical pictures, it also feels like a lifetime ago.

Also today, a fellow SLOS mommy got to share the news she is pregnant with a healthy baby. Happiness and hope. Craving fulfilled.

Over a hundred more people, strangers in a room, know your name now, Harper. Happy eight week birthday, bean. I love you still. --Mommy

PS - My experience with you has heightened my passion and awareness on certain political issues. This bill makes me incredibly angry:

Ashes and hate

Today I finally brought Harper home - unfortunately, it was in a box.

At least it's a pretty box. So very, very tiny.

We picked up the ashes at 10 AM. At around 4:30 PM the tidal wave hit me. I couldn't stop crying, and I couldn't have told you why.

I just kept thinking, Today, I brought my daughter home in a box.

Up until then, it was a lovely day. Sunny gorgeous weather , plans with family and friends, smiled with Shea, crashing the neighbor's moonbounce birthday.

We watched a little girl, a stranger, climb up the moounbounce with Shea and commented how adorable she was. "Maybe you should make me a cute little girl like that," said Lou, carelessly.

My eyes filled with tears, "We're trying," I told him. Them a second later, "I already did."

An hour later the wave of grief hit. Out of nowhere. I was home alone with Shea and it was like getting hit by a bus. I was trying so very hard not to lose it in front of him. Not to let the harsh and ugly sobbing escape. When Lou got home I retreated to my bed and let the tears come. And come and come and come.

I decided to skip the cookout with friends we'd planned to go to. "I'm so, so sorry."

I hate this. I hate that it can sneak up on me at any time. That I have no control over it. That I can't make it stop when it comes. I hate the ugly cry. I hate that Harper's death certificate looks just like her birth certificate would have and that I had to learn the first name of her neonatologist on her death certificate. I hate that it's a beautiful day, and that I want to see my friends, but I don't want to leave my bed. I hate that I both crave people's company and want the world to leave me alone in silence. I hate that I can barely type this because I can't stop crying. I hate that our day began with Shea innocently asking, "But what happened to baby Harper?" I hate having to calmly tell him, "She died, Shea, remember?"

I hate that we brought Harper home in a box.

I want my baby back. I want to wake up and find out this was all just a terrible bad dream. I want to rewind just until yesterday, when I felt fine, when I felt hopeful. I want to stop being reminded every time my clothes don't fit. I want to use our crib and our jumperoo and our soft baby blankets. I want to curl up in our new armchair with Shea on one side and a baby on the other reading a book and rocking. I want my eyes to hurt because I was up all night with a newborn, not because I can't stop crying.

I want all of this, and I can't have it. It sucks. It's not fair. I hate it. And I hate feeling sorry for myself like this.

How did this turn out to be such a bad day?

The Rainbow Connection

One thing that I learned after Harper's passing was that babies born after a stillbirth, miscarriage, or infant loss are called "rainbow babies." Support groups, blogs, and discussion boards about life after losing a child are full of phrases like, "Praying for a rainbow" or "Welcoming our rainbow on X/X/2013."

I love this analogy, the idea that something wondrous and beautiful can come after a storm. It seems a perfect description of a new life after the unthinkable loss of a baby. And really, who doesn't love rainbows? Gay rights, Kermit the Frog, pot of gold, Wizard of Oz - all positive associations!

My new evening obsession is reading discussion boards about women trying to conceive after a loss, particularly boards about those who, like me, are genetic carriers for nasty conditions.

These boards are an alphabet soup of acronyms, likely familiar to anyone who has experienced fertility issues. IVF. PGD. TTC. BFP. CVS. D&C. TFMR. AF. DPO. HPT. RE.

I have become totally addicted. I inwardly cheer when I read posts labeled "Baby is healthy!" or "Good news!!" or "Our rainbow is here!" or "CVS in negative!" I tense in sympathy for "The wait for results is killing me" or "Had CVS today, the waiting begins." And I want to give hugs of understanding to "Bad news" or "I miss her so much today."

Last week, Lou and I visited a fertility specialist. When you are carriers of a fatal genetic disorder, the surest path to ensuring healthy embyros is pre-implantation genetic diagnosis (PGD) combined with IVF. Right after Harper's birth, and even more so after her death, I couldn't conceive (if you'll pardon the pun!) of any other pathway to another child. The risk of going through the pain of loss seemed too great, too unthinkable to take the risk.

But our thinking has changed a great deal in the past month. And the visit to the fertility specialist confirmed for us where we'd begun to lean. For another child, we would take our chances and try to conceive (or TTC in internet lingo) naturally. After all, we have a 75% chance of an SLOS-free child, and we can test for that via a CVS at 10-12 weeks.

And if the baby does have SLOS? TFMR. Termination for medical reasons.

"Are you sure?" Lou asks. "Can you really handle the stress of waiting for results? Handle already being pregnant?"

An unanswerable question. I'm beginning to get used to those. But having done a great deal of introspective consideration lately, and having spent a fair amount of time chatting with counseling professionals, I actually feel confident in our decision to forego high tech baby production.

IVF was what I used to do. I spent two years as an undergraduate and five years in graduate school running IVF cycle after IVF cycle. Primarily in cattle, granted, but the process is nearly identical.

I know too much. And every single step of the process (and whoa, boy, are there a lot of steps!) would be a  sickening freefall on the emotional rollercoaster. Not that I'm fooling myself into thinking that the weeks waiting for genetic test results and the process of actively terminating a pregnancy will be easy, but it's at least limited to a shorter time period.

TFMR is my least favorite acronym and the one associated with many of the most heartbreaking stories. In some ways, for us, the decision is... not easy, exactly, because easy is a totally wrong word for something incredibly difficult and painful, but more black and white. Although we haven't gotten the final sequencing results of our SLOS mutations, from everything Dr. Porter has told us, based on Harper's test results and our  genetic backgrounds, we are likely to be carriers of common and very severe mutations. Which means any SLOS affected child we might have is highly likely to end up with a terminal condition, like Harper, assuming they make it to birth at all, which is extremely unlikely. So terminating, horrible as it would be to go through, is just hastening a process that would already be well underway.

I prefer to focus on the 75% chance everything will be OK. I like our odds.

All of this has given me new found empathy for friends and family members who have struggled with fertility problems. Not that I pretend to understand their pain. But in looking at pictures of newborn babies on Facebook, seeing parents out with their Snap N'Go strollers, hearing about pregnancy announcements, or seeing swollen bellies, I now know it is possible to feel both heartfelt joy and happiness for those that you love while feeling heartbreaking sadness and envy for yourself. Completely simultaneously. I imagine that emotional dichotomy is, like the acronyms, something anyone with fertility issues is all too familiar with.

In the meantime, I will try to dream about rainbows.

One month, revisited

One month ago today, I got up, showered and dressed, and made the daily trek to the hospital to hold my Harper bean. Our first and last day in the step down unit of the NICU. That night, curled up against her daddy's chest, with her mommy holding her hands and showering her with kisses and tears, she died.

A major anniversary that few noticed but me. And my dad, who called me to ask how I was doing.

This has been my first week back at work - by definition, I suppose, a little less than one month after Harper's death. It feels strangely normal. As if nothing has really changed, as if the past ten months had never happened. As if I'd never been pregnant, never had a baby, never experienced the pain of losing her. It's disconcerting - not necessarily good or bad. Just weird.

That erasure, that sense of re-written history, makes it that much more jarring when I encounter reminders. The jar of peanuts on my desk, from when I was bulking up on protein to try to make the baby grow. The onesie, left at the office, a kind gift from a colleague. The blank spaces on my normally packed calendar, cleared in anticipation of maternity leave. The mini-candy bar at the bottom of my purse, taken as a quick snack from the nursing lounge outside the NICU. Standing on the Metro train, because I'm no longer pregnant. Casual inquires about summer plans, when my summer plans have changed dramatically.

The very nature of my job itself.

It's a very different feeling, talking about patient stories, when your life has become a patient's story. The kind with an unhappy ending. Looking at statistics on the number of diseases whose molecular causes have been discovered since they advent of the Human Genome Project is no longer a neutral number exercise. SLOS was one of those diseases.

An issue with such a short life is that the anniversaries of Harper's birth and her death will always be close. Always there will be two days, within a three week period, that will twinge and remind and hurt and summon. Which was more traumatic? Harper's birth and diagnosis or her death? Maybe because it's still too close, but I find that question impossible to answer. They both caused massive pain.

I guess I will forever have a reason to drink too much tequila on Cinco de Mayo. (Although, in my experience, most people don't need much of an excuse to do this...)

Sometimes I still feel phantom baby kicks, imaginary fluttering in my belly. I wonder if I had those with Shea, too? And I was just too busy with him to notice?

I've gone back to read my blog posts from when I was pregnant, and I don't even recognize the person who wrote them. I can barely relate to the emotional roller coaster of worry and fears - it seems so, well, stupid. So small. So insignificant. How could I have been so despairing over club feet? Worrying so much about daycare before and after heart surgery? How could I have wasted so many hours crying on FIXABLE problems? Reading them actually adds to my sense that it all never happened - I feel so removed from that pregnancy, from those emotions, that seemed so intense at the time.

I want to scream at that person. At my pregnant self. You have no idea, I want to say. No idea what's coming, no idea how bad it's going to get. It is going to be beyond your worst nightmares, your worse imagining. Your bean is not going to be OK.

I want to tell that person that instead of birth announcements you will be sending out memorial cards. Beautiful cards with the only picture of your baby girl's eyes wide open. Cards to say thank you for the support and kindness and helping hands.

Someday I hope I can tell that former me, that blogger without a clue, that this too shall pass. You will survive it. You will stop counting the days and weeks and months since Harper was born and since Harper died. The new normal will just be... normal.

But it's only been a month, and I'm not ready yet.

Trauma earworms

There are few movies that I enjoyed more than the books that inspired them, but Touching the Void was definitely one of them. It was partly because I've never been to the Siula Grande mountains in South America where Joe Simpson had his accident, and I understood what he went through much better after seeing the landscape in the movie. And also because I didn't know the Boney M song that was stuck in his head as he becomes delirious. Hearing it in the movie, you could see how it could be both haunting and incredibly irritating to have that song stuck in your head.

I now better understand the Trauma Earworm, a totally random song that goes round and round your head, usually inappropriately or inanely, as you deal with some impossibly hard or emotional situation. It is forever, in your mind, associated with whatever happened.

My Harper earworm was Oasis' Wonderwall, and I'd almost forgotten completely about it until I heard it playing today. What was especially annoying about it, in my case, was that: 1) I really don't know the lyrics that well, so it was really just bits and snatches that were going round and round in my head; and 2) not really remembering the song that well, I also didn't realize what song it truly was, and kept thinking it was actually by Green Day. In fact, I kept saying to Lou, "I've got that Green Day song stuck in my head, you know that one that starts out with "Today is gonna be the day that they're gonna throw it back to you..."

Lou either was oblivious to the fact that the song wasn't by Green Day (likely) or just being polite or distracted in never correcting me. I've also probably mortally insulted both Green Day and Oasis fans with this mental mixup, but I'm hoping they'll but me some slack since all of this was occurring the midst of the hellish turmoil that was Harper's diagnosis, life, and death. (Incidentally, are there really Oasis fans? Did they ever sing anything else?)

It came back to me today, when I heard the song, how often those beginning lines came into my head as I held Harper and hung out in the hospital. I think it's because there was so much of a sense of "Today is the day..." throughout our time in the hospital. Today is the day the baby will be born. Today is the day we see the cardiologist, ophthalmologist, orthopedist, endocrinologist, genetic counselor, speech therapist, plastic surgeon, [insert specialist here]... Today is the first day of the rest of your lives.

In any event, reminded of this earworm today, I actually looked up the lyrics. Which is when I realized which song it actually was. And honestly, I haven't the foggiest idea of what the song means - what the heck is a wonderwall, anyways? Nor am I sure that I feel those opening lyrics, which were stuck in my head, really are particularly poignant or relevant to everything we went through with Harper.

But deeper in the song, the words I couldn't remember (obviously, since they bear the title of the song), really do make me think about my relationship with Harper, and the way I felt holding her:

"I don't believe that anybody
Feels the way I do about you now.

And all the roads we have to walk are winding
And all the lights that lead us there are blinding
There are many things that I
Would like to say to you but I don't know how

Because maybe, you're gonna be the one that saves me
And after all, you're my wonderwall."

What is a wonderwall? And why this particular pop song? Beats me. But given the complex emotions I still struggle with over Harper's life and death, it seems only right to have some unanswered questions.

Although I'm wishing my mind had summoned a better song to forever be associated with my bean.

No words

When I showed Lou my new, bright yellow SLO bracelet he mused, "Although I know it's probably for the best that Harper didn't make it [because she was so severely affected] I wonder if we've missed out on something." He went on to talk about an article he'd read summarizing comments from parents of special needs kids, and we talked about how life might be different if we were part of that community because of our child, how we might be better as people. What more she could have taught us.

There are the moments of missing Harper. Our bean. And then there are the moments of missing the-baby-that-Harper-wasn't. I'm having more and more of the latter. Those moments are sad. They make me cry. They make me ache.

Moments in every day life when I feel like I should be here, doing this, but I should be holding a baby. Moments where we're talking about future plans, and it hits me how different those plans are without a baby. Moments where I see very pregnant women, or parents carrying their newborns, and I'm hit with a burning wave of jealousy and sadness so strong it hurts to be alive.

I am still having trouble keeping my eye makeup on for the entire day. Even the best waterproof mascara can only hold up to so many tears.

Those moments make up only a small portion of my day. They are fleeting. They are powerful. They hurt and they wound. They are only moments. It is what it is.

I am looking forward to returning to work, in part, because my professional life is largely free of those moments. There are few moments at the office where I would find likely myself thinking "this feels wrong, there should be a baby here."

I am getting much better at responding to the inevitable question of, "How's the baby?/Did you have a boy or girl?/Are you getting any sleep with the new baby?" from those who knew I was pregnant but not Harper's story. Colleagues, neighbors, our babysitter. I tell them what happened, and I find myself smiling because, I think, I tend to be smiley by nature, because telling has become better rehearsed, and because memories of Harper make me smile. I wonder if those who I'm telling think the smile is inappropriate. That there's something wrong with me. I wonder if I need to work on a sad face to use when I talk about Harper's death.

Sooner or later, we will run out of people who don't know, and I won't have to say anymore, "We had a baby girl, Harper, but she died." Or see the shocked, pitying, horrified, sad, sympathetic looks and reactions.     I look forward to the day there are no more People Who Haven't Heard.

Yesterday, for the first time, we didn't receive a single condolence card, and I thought maybe this was a sign of the end of the mourning period. The settling into a new normal.

Until we received more today.

So many, many lovely notes that start, "I don't have the words..." or "I don't know what to say..." The thing is, I am also at a loss of words on how to respond to such kindnesses. To when people say, "I'm so sorry."

There's no good response. "Thank you" becomes inevitable, but isn't really what you feel. "Me, too." seems too glib, although maybe more accurate. "It sucks" is probably the closest to the truth, but feels inappropriate.

A friend who lost a parent recently told me that, even years and years later, she still doesn't have a good response to, "I'm sorry."

Maybe there just isn't one.

So I end up not responding. The emails, the messages, the notes. I don't know what to say, so I end up saying nothing at all. Harper has given me the courage to talk and share freely my feelings through all of the pain and joy of her existence. But for this, she has given me no words.