Tuesday, December 31, 2013

Year End

2013 has arguably been the worst year of our lives.

It certainly feels like the longest.

Maybe because, despite this being the year we lost Harper and all of the months of worry leading up to her birth and all of the mourning and sadness after, a lot of good came out of this year, too. Not the least of which was Harper herself.

We've come to the end of 2013, and I'm struggling to wrap my mind around it. Maybe I should just give up trying. I'm having terrible issues with insomnia, and I strongly suspect it has to do with the subconscious stress of the holidays and the turn of the year.

I'm not entirely sure how to think back on the past year. How to sum up the roller coaster of emotions, then and now.

This is the pattern of thoughts that has been haunting me lately:

I've spent almost 9 out of the past 12 months pregnant. It'll be 18 out of 24 months. Truth be told, I am heartily sick of being pregnant. It seems horrible to complain when we've been so fortunate to be blessed with another (so far!) healthy baby, but it's a pretty large toll on one's body. And thus far, I have no baby to show for it.

Now that we know that spawn is healthy, I'm just ready for him to be here. I just want to fast forward through these last few months and just hold him and nurse him and know he's going to survive. That we'll get to bring him home.

He seems to be doing his best to reassure me by being the most active of my three pregnancies, moving and kicking constantly, even at this fairly early stage. "Baby dancing" is trying to conceive euphemism for having sex when you think you're fertile, but I actually think it more accurately describes those early prenatal flips, squirms, and wiggles. Baby is indeed dancing.

I've been thinking a lot lately about what would have happened if we'd found out earlier. What if our genetic counselor had put all the pieces together and we'd been tested for SLOS in utero? There's no doubt in my mind we would have terminated the pregnancy. SLOS is just too scary a disease.

I never would have met Harper. I would have been a completely different person. And not necessarily a better one.

As cliche as it sounds, this really has been a life changing year. So much so that I can barely grasp all that took place in the space of a year. Was it really only a few months ago that Harper was born? That she died? I actually have to read this blog to remind myself that it was less than a year ago that I was stressing over every doctor's appointment, full of false hope that somehow it would all work out all right. That we had a fixable bean.

I keep thinking of the song from Rent, Seasons of Love. "How do you measure, measure a year?"

Five hundred, twenty-five thousand, six hundred minutes indeed.

The conclusion of that song - that a year should be measured in love - reminds me to do something.

To say thank you.

To all that read this blog, to all the friends and family and colleagues who reached out to express love and support, to the favors large and small - thank you.

Much of that time is a blur. One day, I suppose I'll be strong enough to go back and re-read all the notes and cards, to watch the video of Harper's memorial service. To be reminded of the unbelievable outpouring from the world around us. I can't do that yet. But I do feel like I cannot possibly express in words or gestures how much all of the words and gestures we received during that horrible time and all the months since really mean. The collective hug that embraced us help us survive the impossible. I feel very guilty sometimes that I haven't done enough in return to truly say thanks. I need to let that go, I suppose, and just do my best to pay it forward when the opportunity presents itself.

I'm one of those people who used to secretly snort when my yoga teacher would say things like "life is a journey."

But this year really has felt like a journey. An around the world trip taking us to places we never knew existed. Introducing us to fellow travelers and new friends, as well as shared experiences with those we'd known forever.

And I think we really are changed forever. I will always be a mommy who lost a child. My boys will always have a sister who does not exist. I will always have a debt of gratitude to those around us who helped us, and continue to help us, recover from this experience. Who help us keep Harper's memory alive.

I am trying to be hopeful that 2014 will be a better year, but there is still that lingering sense of fear, of uncertainty. I was hopeful last year, too, and we all know how that turned out.

So, in an effort to uphold our commitment to trying to take the positive out of Harper's short life and loss, I make the following Harper-related New Year's Resolutions, large and small:


  • I am going to bring donuts, cookies, or something of the ilk to the NICU staff on Harper's birthday. They took such amazing care of her, and of us - we won't be able to participate in reunions, like so many former-NICU parents do, but I'd like to continue to express our thanks.
  • When I start to lose my temper with Shea, I will do my best to remember how grateful I am for him, how critical he was to getting me out of bed everyday, during a time when I wanted nothing more than to disappear. I will hug him at every opportunity, and when his brother arrives, I will do the same.
  • Similarly, when Lou and I are cranky and tired from dealing with two small children and the world around us, I will remind myself how he was with me every step of this journey, my partner at every turn. 
  • On May 5, I will take new spawn to visit Harper's tree, so the sister he will never meet will know that she hasn't been replaced, that our love and our family still includes her.
  • I will continue to look for ways to say thank you and express my love for family and friends who were there for us in our time of greatest need.
  • I will try to use the lessons we learned from Harper's loss to help others who are mourning or in need. 
Happy New Year, Harper bean. 

Monday, December 30, 2013

A holiday for Harper

As we headed home from upstate NY, Lou squeezed my hand and asked, "Was the holiday as terrible as you thought it might be?"

In some ways, yes. I don't think I ever fully captured the holiday spirit. There was still a lot of time spent hidden away, crying, alternating between sadness for our loss, an eerie sense of wrongness and deja vu, resentment and anger that no one else seemed to be missing Harper, and a desire to just be home in my own space, safe and quiet.

But I was still able to find joy in watching Shea enjoy his family visits, get excited about frolicking in the snow and unwrapping new toys, and snuggling with him to read new stories.

And then there was this:




My stepmother made this beautiful stocking, decorated with bean stalks and fairies for our Harper bean. It made me feel like she was there, part of the holiday, acknowledged and loved.

Inside was a special gift for Shea, big brother to Harper and big brother to new baby yet to come. For the first time, I could feel the presence of my whole family, and it made a world of difference.

Happy holidays, Harper bean. I'm sorry you weren't hear to see the Chanukah candles lit or hear Shea sing the prayers or watch Shea drive the train around the Christmas tree. But know that you were with us in spirit, and you are still loved.


Wednesday, December 18, 2013

The New Normal

In retrospect, I was incredibly naive during my anatomy ultrasound when I was pregnant with Shea. First, I remember having no idea that it would be the last ultrasound I would receive in that pregnancy, the last "peek" at our baby before meeting him in the flesh. Second, I had no idea all of the things that could be found wrong.

Sure, I vaguely recall being a little nervous about it, but as they flashed through every part of the anatomy, I didn't spend much time considering what the alternative to "normal" was.

Then came Harper, who would have been 8 months old today.

Every single ultrasound - and there were dozens - was a vehicle for bad news. I learned all the things they looked for as having the potential to go wrong. And in Harper's case they found many of them.

This was what I was thinking as we went through the anatomy scan today: Ankles (club feet?). Fingers (are there 5 on each hand?) Legs (dwarfism?). Kidneys (1 or 2?). Heart (Heart rate, ASD, VSD, AVSD, TGA?). Penis (does the anatomy match the chromosomes?) Stomach (Present?). Brain (I don't even like to think about all that can go wrong here). Size (SGA, IUGR?) Mouth and nose (cleft palate? Rare genetic disorders?) Umbilical cord (1 artery or 2?) And on and on and on.

Except this time, every answer was "normal". Every measurement was exactly on target. And our boy spent the whole time wiggling, trying to figure out how to suck his thumb, and doing his best to reassure his mommy that everything really was OK.

Every "normal", every "looks great", every lighthearted joke by the technician, made my smile wider, made my heartbeat slow down a little more, made me feel like finally finally there was nothing to worry about. ("I'm sure you'll find something," joked Lou.)

I stopped on the way home to buy yarn to make him a baby blanket. ("The new baby will say, 'Oh, it's so soft, I love it!" proclaimed Shea.)

Eight months ago, there was nothing but tears and horror and the beginning of the trail that led to the loss of Harper. Today, there was nothing but joy.

Hello, little one!



Wednesday, December 11, 2013

The fear

On a discussion board that I occasionally read,  for women who are pregnant after suffering a stillbirth or infant loss,  someone recently posed the question,  "Are you scared before doctor's appointments? "

And I thought,  Every time.

I am one week away from my anatomy scan, and I am fully convinced they will find something horribly wrong. I have no basis for this belief. Everything seems fine. I can hear his little heart beat on my home Doppler. Feel an occasional wiggle. No alarming symptoms.

It is just fear.

The fear of knowing you've been unlucky once,  and it can happen again. The fear born of joining communities of parents who have experienced loss over and iver again. The fear of lack of control.

Or maybe it's survival instinct. I don't remember being scared of appointments with Shea. With Harper, each appointment brought continuous bad news,  but even then I maintained a kernel of hope, of optimism it would all be OK.

Maybe if I go in with the worst expectations,  I will protect my soul from being shattered again. I will face only the prospect of a pleasant surprise.

One week until the scan. And I am so very scared.

Saturday, December 7, 2013

Missing Harper

Dear Harper bean,

I've spent the past couple of days struggling with the idea of seven months. Starting to write, and then stopping.

I can't decide if 7 months seems unbelievable because it's so short. Or because it's so long.

Seven months since I last held you. Seven months since I last heard you squeak. Seven months since I last lay awake all night worrying about your future and ours. Seven months since I laid my cheek on your fuzzy little head and wondered if you recognized your mommy. Seven months since that nightmarish night when the monitor stopped beeping and we cried and cried over you.

I've been thinking a lot about why it's been so hard lately, why I've been sad all over, bean. And I think it's because I feel surrounded by this sense of moving on. Few ask about you anymore. Everyone is celebrating the holidays like it's the same as always. I don't get to say your name as often.

I think my pregnancy has contributed to this. I've become the woman having another baby, not the woman who has lost her baby. I'm more likely to get asked about names for your brother than to have an opportunity to say your name aloud. I'm forced into conversations about whether four years is a good age gap between children, while inside my whole soul is screaming, but there were three years between the first two!

I sit here in front of your ashes, and I have not moved on.

This is not a replacement baby growing inside me. It is a new baby. One I have finally begun to dream about and wonder about and worry about and feel squirming in quiet moments. But it is not you.

He is not my poor, damaged bean.

Harper, I see you in every baby girl I pass. In every pink, overly feminine baby outfit. In the untouched quilts piled in the crib. I imagine bundling you up on chilly days, and you sitting on my lap besides your brother as I read him a story. In the belly of every pregnant woman I pass. In my own. I watch the video of you so I won't forget the sound of your voice, so I can try to remember what it was like to touch you.

Seven months ago, my child died. And I have not moved on.

I almost miss the manic energy that haunted me during your life and death. Your brother makes me tired, leaches my energy. I think about how nice it would be to spend the next 20 weeks curled up in bed around him, warm and round, letting the rest of the world move on, while we snuggled together.

But Shea needs me. And I am not a lay in bed sort of person.

It won't matter if everyone else in the world stops thinking about you, Harper bean. If they go on with their lives, and I am the only one left who says your name. I will keep counting the months. I will keep holding your hand in my memory. I will not forget.

I'm so sorry your short life was filled with such pain. Although I had no control over it, I think that is a regret I will carry until I myself am ashes. I still wish we could have brought you home.

I recently read an article, I can't remember where, written by a mother who talked about bringing her stillborn son home. Literally bringing his corpse home, showing him his room, taking him outside, cuddling with him, introducing him to all the spaces in his house. I think they kept him for a few days before returning him for his funeral.

Once upon a time, I think I would have regarded such an act with disgust. With incomprehension. I understand it now.

I have reached the point of rambling. Pregnancy brain may transform this blog, this ode to you, Harper bean, into a nonsensical raving worthy of a beat poet.

But I guess the bottom line is that I love you. And I miss you. Has it really been 7 months?

Saturday, November 30, 2013

Sad, sad, go away...

I give up. I admit it. I'm sad again.

Maybe it's the holidays. Or the six month anniversary. Maybe it's the crowds. Or the pregnancy hormones. Maybe it's the phase of the moon. Who the hell knows.

I just know that I'm spending more time crying or feeling like crying than I feel like laughing right now.

And it pisses me off.

Seriously, I thought I was done with this. More good days than bad. Able to remember without flinching. And yeah, yeah, yeah, I've read all the literature, been to the support groups - I know that grief knows no timeline. That it might spring up when you least expected it. I know, but knowing is different than feeling, than experiencing it. Knowing the reason why only does so much when I wake up weeping for no reason, when I want to go hide in my bed to curl up and cry.

It's also making me feel horribly guilty, because I feel like it's such an injustice to the spawn to come. I don't want to be sad with a baby on the way. I want to be excited. I want to be planning. I want to be thinking of lists of names and folding baby blankets and reading books about new babies with my boo.

Lou has been wonderful. Supportive and loving. Planning outings to baby stores and for maternity clothes to help generate excitement for the new baby.

I hate, hate, hate that I'm sad again. I'm ready for this phase to pass.

Thursday, November 28, 2013

A year of mourning

Holidays are even worse than I imagined.

Family,  Facebook, the news - everyone's gushing about the holiday,  giving thanks for family and a "good year. "  All I want to do is scream "It's been the worst fucking year of my life."

How can everyone be so happy, so normal?  Today doesn't feel like a day for moving on. It feels like a day when the world is oblivious to pain,  to my pain. I want the control to make the whole universe stop and take a moment to think how this day might be different if we hadn't gone through the nightmare of the lasts six months. To mourn with me. To not act like this was a year like any other.

It used to be that society dictated a year or more for mourning. Wearing black. No celebrations or social events. Quiet time spent with immediate family.

Maybe there's something to that. Maybe there's wisdom in avoiding the "firsts" after a child's death. Maybe there is recognition that celebration seems abnormal,  seems callous,  feels like sandpaper on an open wound, in the wake of heartbreak.

How do I balance my need to cry and hide and mourn with my desire to share holiday joy with Shea? How do I smile and light candles,  as if this was a normal holiday?  How do I pretend it doesn't all feel too loud and too bright and completely wrong?

How can I make the thankfulness I feel for Lou and Shea and the spawn overcome the bitterness I feel for hating the holidays?

This is the first time I have ever wished I was spending the holiday season alone.

Wednesday, November 27, 2013

Wearable memories

Last night, I took my maternity clothes out of storage. Lugged the boxes upstairs, began sorting through, putting them in drawers.

And then I completely lost it.

I never wanted to wear them again. I thought I was done. And it's so soon. There are still so many memories wrapped up in those clothes. I feel like I just put them away yesterday, in the frenzy of housekeeping following Harper's death.

I need them. I hate them.

I had a brief moment in which I seriously considered scrapping them all and starting fresh. But it seemed like a stupid impulse, so I resisted.

But I stopped putting them away, because I just couldn't handle it anymore. Maybe I can finish the job after Thanksgiving. Maybe buying a few new pieces of clothing will help make this pregnancy seem new, not lost in past clothes. I don't know.

As I wept over the clothes, Lou and Shea came to hug me.

"Why is Mommy crying?"

"Mommy is sad about Harper bean" Lou told him.

"I'm sorry," Shea told me. "I'm sorry your Harper baby is all gone."

I told him thank you. Five minutes later he was chattering, full of happy plans for the "new baby that is in your tummy."

If only it was that easy for me.




Sunday, November 24, 2013

Forgetting

Do you know what I was thinking about last Monday?

I was thinking about how this was the week we were going to share our good news with everyone. I was thinking about the upcoming doctor's appointment, and how nervous I was about not hearing a heartbeat or finding something horribly wrong. I was thinking of the meltdown the night before, where I sobbed and sobbed at the thought of the upcoming holidays and all the lost dreams and new dreams blending together in sadness. I was wondering how I could get through the day with so little sleep after so much crying with a self-imposed prohibition on caffeine. I was thinking about how I hesitated when a work acquaintance asked me how many kids I had, stumbling over my response. I was thinking about whether I could find anything to wear that wasn't maternity clothes, that still looked professional enough for an evening work commitment. I was thinking about how I wouldn't see Shea that evening to tuck him into bed. I was hoping he liked the homemade chili I'd sent in for him for lunch.

Do you know I wasn't thinking about?

It was Harper's 7 month birthday. And I forgot.

How do I feel about that?

I honestly don't know. Maybe I subconsciously remembered, thus explaining the timing of the nighttime meltdown. But, in truth, I think I just forgot.

I never thought that would happen. Ever.

Part of me feels horribly guilty. It's too soon. I'm not ready to forget. As dreadful as each milestone is, it's also evidence that she existed. That I had a tiny baby, and I held her in my arms as she lived and as she died. She will always be my Harper bean, and I don't want to let her go.

Part of me also feels relief. Like maybe this is healthy. Like maybe I'm focusing on the future for a change. A future with Lou, and Shea, and his upcoming little brother. Like maybe remembering Harper would have been 7 months isn't quite as critical as remembering I'm coming up on 20 weeks pregnant, and I need to schedule an ultrasound.

A couple of people have asked me whether it bothers me that the spawn's due date (May 7) is so close to when Harper died (May 5). It doesn't, not at this very moment anyways. It'll probably begin to get to me as we get closer. The 5th of every month is much more painful than the 18th, and I can't imagine that any anniversary of her death will be forgotten any time soon.

The fact that her death is so much easier to remember than her birth makes me very sad. But I suppose trauma and pain have a way of deeply branding memories in a way nothing else does.

For the moment, as I sort out in my own mind how I feel about my first moment of forgetfulness, I guess I'll err on the side of hopefulness, and think about this being healthy, a new focus on a happy future with my growing family. Harper isn't forgotten, but she's also not here, and I have one and a half living children who need their mommy present everyday. Not every day minus two days per month. Maybe it's just time to cut that down to one day.

Although I still feel incredibly sorry that I forgot.

Happy belated birthday, Harper bean. I never forget that I loved you.

Friday, November 22, 2013

A Secret

August 26, 2013

Dear Harper bean,

This is a secret post. Just between you and me. I have some news, and I wanted to tell you before anyone else, even your daddy.

I'm pregnant, little bean.

It's barely sinking in. I have been occupying myself making a cute video to break the news to your father, so as not to think about what this all might mean. The testing. The fear. The waiting. The hope.

A May rainbow.

I hope it's a little girl. A sister for you, bean.

I  hope that the day I hit the publish button on this post - 10 to 12 weeks from now -  it will be a happy ending on a long, sad road, and not the forging of a new path of sorrow.

Stay tuned, Harper. I love you.

September 3rd, 2013

I have had to reschedule my doctor's appointment three times, because I can't seem to use my calendar correctly. Already the nervousness and panic is beginning. I am not letting myself feel excitement yet. Or joy. I have begun to think a lot about what it would be like if we get bad news, bad test results. It is keeping me up at night, haunting me during the day. So many good news stories on the genetic carriers board, but my eyes seem drawn only to the bad ones.

Lou and I have been talking about what to call this new little one. Shea is boo, Harper was bean.

"Spawn?"

Sept. 8, 2013

Nearly 6 weeks pregnant, and the paranoia has officially set in. Everything is in two week increments. Two weeks until the doctor's appointment. Two weeks after that for the CVS. Two weeks more waiting for results.

Then the potentially horrible prospect of termination.

I am having nightmares about it all. My last CVS experience was not good. Atypically horrifically painful. And I keep reliving that pain, magnifying it, in every dream. I dream of not seeing a heartbeat. I dream of having to say goodbye again.

I keep telling myself I'll feel better after the first time I see that heart beating. Not being able to tell anyone is so much more very isolating than usual. I just want this little one to be OK.

Sept. 17, 2013

Guess what, bean?!? Today I saw the heartbeat for the first time. A tiny little flutter, barely visible, but clearly there. I was reminded how much I like seeing my high-risk OB, he's relaxed and reassuring, not phased by dates being off or taking a couple minutes to find that little heart.

CVS is scheduled. On our wedding anniversary. Again. Hoping that this time it's a good omen.

Trying not to get too attached to this little rainbow before we know more.

But I would really like a little Schmoo...

Sept. 18, 2013

Morning sickness and exhaustion. I'd forgotten how during my last pregnancy I was so relieved I would never have to go through this again. Famous last words. Wish I could be reassured that these were signs of a healthy pregnancy, but since it didn't work out so well last time, it does nothing to mitigate my anxiety. Wishing badly I could fast forward a few weeks and get the results.

Sept. 20, 2013

The only thing more paranoid than a pregnant woman is a pregnant woman who is still reeling from a loss. Every cramp, every twinge makes me panic a little. I worry because I'm tired and nauseous (like I was with Harper), I worry when I'm not tired and nauseous, because maybe something's gone wrong with the baby. I try not to think about it too much, but find I can't think of anything else. I tell myself not to get too attached to the baby, because it might not be a keeper, but I long for the hidden glow of falling in love with a blip on the US, like I did in my previous pregnancies. I worry all the time about jinxing it, not wanting to tell anyone, not changing my signature on discussion boards, not sharing the secret with the SLOS family, as so many others do. I wonder: is the baby's heart beating now? How about now? Is it still OK? I think about the odds continuously, hoping that 75 percent chance is as big a target as it sounds. That this time, the Punnett square will be kind. I told Lou the other day that if this one doesn't work out, I'm done. No more trying. I wonder if I mean that. 27 more days until the CVS.

Sept. 21, 2013

I'm at the airport, alternating between panic, resignation, and hope. I am no longer tired or nauseous. I no longer feel pregnant. "I think there is something terribly wrong," I told Lou. "And there is nothing I can do."

Ultrasounds are a service airports should provide. Like massages. Or flu shots.

It's either OK or it is not. I imagine myself going to an emergency room in San Francisco, begging for an ultrasound. I tell myself that 3000 miles away from home is not the place to hear bad news. I constantly turn my awareness inward, searching for some bodily sign that will make me feel better, reassure me.

I never thought I'd miss that non-stop car sick feeling.

So I sit in the airport and crochet. A baby blanket. Nothing I can do for my baby, but at least I can help someone else's stay safe and warm.

I wish I could hear that little heart beating. I wonder if it has stopped.

Sept. 29, 2013

Nauseous, not nauseous, I worry. I wonder if the nausea is psychosomatic, because I'm so stressed about what it's absence means. I try to steel myself for the news of a missed miscarriage at my next appointment. I wonder what it will be like to find out that something is wrong. Then I realize I've already done that. I've survived it. Maybe it will be OK.

Then I feel sure that we will be unlucky again.

We've begun to tell a few people. Very few. I almost regret it. It's terrifying, makes it feel more real. I'm not ready for real. Real means potential bad news. Real means terror and worry and fear.

18 more days until the CVS.

October 3, 2013

Only one more week until the next ultrasound, two weeks until the CVS. Anxiety is my constant companion.

October 9, 2013

The ultrasound is tomorrow, then it will be one more week until the CVS. My morning sickness comes and goes, but the fatigue is gone. I've reached a place where I mostly try to forget about being pregnant. Like it isn't really happening to me. Hoping tomorrow goes smoothly. And that I can hold down my lunch.

October 10, 2013

Dear Harper bean,

Meet spawn - due May 7 and looking strong, flying upside down like Woodstock! Oh, please, oh, please, let the CVS be OK!


October 15, 2013

Only two days until the CVS, and I'm feeling horrifically anxious. Against my better judgement, I tuned back into the community of genetic carriers online. Turned out to be a very bad idea. For whatever reason, there's just been a slew of new participants who have just had horrendous luck. With diseases that carry the same odds, they've just had negative result after negative result, termination after termination. Reading their stories has filled me with dread and has made it very, very difficult to stay hopeful. I keep telling myself we beat the odds once, we have Shea. But the evil, niggling voice within tells me we've been unlucky before, too. It's a terrible, terrible feeling knowing there is this little one growing inside you and all you can do is wait and hope it all turns out OK. Lou spends a lot of time trying to reassure me, but he thought it would be OK last time, too. And that didn't work out so well. I just want to be relaxed and enjoy the secret time of being pregnant, when know one knows but you, your family, and your wee one. Instead, I'm spending an inordinate amount of time focused on the horror of having to terminate my little Woodstock baby. My other big nightmare is that we won't even get to the CVS results, because we'll get the early results back and find out there's some sort of trisomy issue. I'm not sure if I want the next two weeks to fly by or stretch out as long as possible.

Oct. 17, 2013

Only a couple of hours until the CVS. I keep thinking of another SLOS mom who went for her CVS, only to find no heartbeat. Later testing revealed the baby was positive for SLO. "What are you so scared about?", Lou asked me last night. I told him it was a dumb question. "The baby will test positive for SLO, and we'll have to terminate," I said. "But we won't find that out tomorrow," he told me gently. He's right. Today, I just need to get through. Hope the pain isn't as bad as last time. Another anxious anniversary.

*******************************************************************************

I survived the CVS. Much less painful than last time, although pretty sore in the aftermath. Spawn was a squirmy, active little nut, waving at us from the ultrasound. Although it's too early to get an official NT reading (our first sign something was wrong last time), at first glance, the doctor thought it all looked normal. A tentatively hopeful finding. Now we wait. Hopefully Australia will be enough of a distraction to keep me from going out of my mind in the next two weeks. Emotional roller coaster of a day - started sick with anxiety, felt more positive as I watched Woodstock dance on the screen, and now back to feeling terribly anxious. Oh, please, oh, please, let it all be OK. Please.


October 18, 2013

The bad news begins. They didn't get enough of a sample. Which means they have to culture the cells - so it will be a FULL MONTH!! before we get back any results. Ugh.

Ugh. Ugh. Ugh. Ugh.

Feel like history is repeating itself, like this is the first stop on the express train of bad news. Two weeks was hard enough - one month?!? I'm feeling so alone right now. Devastated, in pain. Every week that goes by is going to make termination (if necessary) harder - trying to imagine what it will be like when I've already got a baby belly, when I might feel the little one wiggling. FUCK. I hate this.

October 19, 2013

I didn't sleep at all last night. Anxiety and worry has increased manifold. Nothing to do but wait, but that doesn't make me feel any better. Lack of sleep seems to have led to illness - I feel terrible today and the inability to take medicines isn't helping. I don't know how I'm going to get through an entire month. How do I hide my pregnancy for that long? My pants are already feeling tight. Sigh.

October 26, 2013

Good news today!!!! The preliminary findings came back perfect - no chromosomal problems! And they came back faster than expected, so maybe the cells are growing quickly, and we'll get our SLO results back sooner. I'm trying to live in denial until then, here on vacation in Australia, it's easy to be distracted. Wishing I could indulge in some wine. Still, this small piece of good news has made me hopeful this rainbow dream might come true. Hoping that glimmer of joy does not prove to be my undoing.

November 6, 2013

Australia has been a fantastic distraction from pregnancy anxiety. I've been enjoying every bit of our time Down Under - or at least have been too exhausted to be thinking too much - and haven't spent too much time obsessing over the test results. In fact, being in Tasmania, we were completely out of touch with the rest of the world, literally deep within the wilderness, surrounded by wallabies, wombats, and devils. So I couldn't have found out any news were there any to be had.

I realized how much I had been hoping beyond hope our cells had grown at superhuman speed when we emerged back into the land of the WiFi and my email inbox remained devastatingly silent. I found myself crushed and anxious all over again.

"I just want to know," I told Lou as we sat on a gorgeous beach in Stokes Bay, on Kangaroo Island, watching the turquoise waters and Shea splashing in a tidal pool. I just want to know.

November 8, 2013

The knee pain began in South Australia. It was worse when I was sitting still or at night, laying down. I didn't think I'd done anything to my knee, although we'd been doing a lot of hiking in Tasmania, and it wasn't a muscular or joint type pain. Rather a throbbing, sharp, nerve pinching sort of pain, like a tooth ache or sciatica.

I woke up in the middle of the night, in the restored railway station we were staying in in Callington, South Australia, and my knee was in agony.

At that moment I knew. I had deep vein thrombosis and was in imminent danger of a blood clot being discharged from my knee to my brain or heart, leaving me dead or incapacitated. My reasoning was this: I was pregnant, and therefore at higher risk; I'd recently taken a 24 hour flight; and I once saw a documentary about a pregnant woman who suffered from DVT and was left in a semi-vegetative state that took place in Australia. So clearly this sort of thing happens in Australia.

At 2 AM, in a great deal of pain, this all made sense.

To say we were miles from the nearest WiFi hotspot is probably a generous overstatement. We were in the middle of nowhere.

So, despite our vows to use our phones as little as possible to avoid the costly data fees, I dove for Lou's phone to frantically Google DVT and knee pain and pregnancy.

Lou's phone sucks. And did I mention I was in pain?

So I turned my phone on. Good news, my symptoms did not sound like DVT. I was not going to die that night.

And I also got this email. From our genetics counselor - subject: Amazing news!!

"Hi Carrie-

So happy to tell you that I just got back results and the baby is unaffected with SLO. Furthermore, the baby didn't inherit either of your mutations, and is not even a carrier of SLO. Hope this is the icing on the cake to a great Australian vacation!"

Lou was awake, suffering from his own insomnia issues. In a tone of disbelief, I read him the email. And then I couldn't stop smiling. We laughed, I cried, we stayed up entirely too late, basking in the happy news of our rainbow. It was worth every tired moment the next day.

We're having a baby!!!!!!!!!!!!!!!

I love Australia!!!!!!!!

November 11, 2013

It's a boy!

Nov. 12, 2013

So, we're having a baby, and I'm a little terrified to let the world know, to hit publish on this post. I keep telling myself, "Just one more doctor's appointment. Just one more check to make sure that little heartbeat is there, and then I'll tell the world."

But it's scary. Because I know there isn't always a happy ending. I've lived that. It sucked.

I'm also in mourning, not only for Harper, but for the daughter we'll never have. After Harper, maybe because of Harper, I was kind of hoping for a little girl. I know Lou was, too.

But I adore the little boy I have, and boys always love their mommies best, right?

Plus, this totally allows me to fulfill my grand vision of brothers in bunk beds, because damnit, I always wanted a bunk bed as a kid, so my kids are going to have them!

It all just seems scary and unreal and guilty and happy and sad all at the same time. Maybe that's just the jetlag talking.

Harper bean, I can't wait to tell your new little brother all about you some day.

Nov. 18, 2013

Having two blogs - my normal therapeutic outlet and this secret post - is a little like living two separate lives. I am having an incredibly rough night, the worst in months, and it is partly because of the upcoming holidays, which is something I can write about, because writing still helps, still heals.

But it's not just the holidays that are getting to me.

It's being pregnant at the exact same time of year. Again. It's causing the exquisitely painful blend of grief and happiness, joy and fear, memories and anticipation.

As Yogi Berra would say, it's like deja vu all over again.

On one hand, I want to shout my news from the rooftops. A baby! A healthy baby! One we can take home, and hold, and love. To be "new baby" for Shea, who we've told, and is super excited.

But then there's the fear. Because I'm reliving all of the events of last year. Beginning to show around Thanksgiving. Wondering what maternity dress to wear to a holiday party. Getting through endless holiday events wishing for a glass of wine. Worry, against all logic and reason, that all this repetition will lead to history repeating itself.

The guilt of being excited about this baby, because it's starting to seem too much like a replacement for Harper. And it's not. He's not.

Trying to manage heartrending grief I'm feeling in this moment about losing Harper, while trying to cling to the happiness you're supposed to feel about a new baby. Reconciling the excitement of those first little flutters with trying to never lose the sense memory of holding Harper's hand.

I talked to parents who lost a child and found out they were pregnant in the midst of grief. They tried to describe it to me. I didn't understand. Now I do.

It is a paradoxical situation. Totally impossible. And yet somehow, there it is. Like the living embodiment of a M.C. Escher painting of emotions.

I wish it would all just stop hurting.

Nov. 19, 2013

Remember this?



 In June, this romper made me cry in a store. It was so cute, and I no longer had a baby to dress in it.

Today, I bought one. I hope you like it, spawn.

My pregnancy is almost halfway over, and so few people know. I wonder if they all think I'm just getting enormously fat? It's not a secret we can keep too much longer, because it's time to move into maternity clothes. Maybe even past time.

48 hours until the next doctor's appointment. Then we can let everyone know.

Nov. 21, 2013

Some more good news from the genetic counselor: microarray results all came back normal. In truth, I'd completely forgotten we'd asked for the microarray results, I was so focused on the SLO test!

I have a doctor's appointment today and am feeling irrationally nervous about it. Hopefully, all will go well and tomorrow will be the big reveal.

Wish me luck, Harper bean....

*********************************************************************************

So the doctor took out the Doppler and there was no heartbeat.

I felt like my heart stopped beating, too.

The OB soothed me, "Let me just get an ultrasound, the baby's just not cooperating with the Doppler."

The wait for the ultrasound machine seemed like it took forever. But then there he was: one wiggly spawn with a nice, strong heartbeat. Hi, Mommy, he waved.

Glad you're ready for your public debut, spawn...

Monday, November 18, 2013

Bah humbug

Holidays suck.

No matter how good you think things are going, no matter how many truly happy things there are to celebrate in your life, there is nothing good about the first holiday season after your baby dies. Nothing.

Tonight, it hit me like a ton of bricks. I cried and sobbed like I haven't for months. I wept to the point of gagging. I hurt again, like it was only yesterday's wound.

I don't think there will be much sleep tonight.

"I didn't know I was still this sad," I told Lou. I didn't think you were either, he replied, as he held me.

This was supposed to be my baby's first Thanksgiving. First Hannukah. First Christmas. First New Year. First snow.

Instead it will be deja vu of last year, when the holidays were all about hopeful anticipation of the baby to come. Instead it will be overwhelming crowds and stimulation against nerves and emotions brushed raw, with no escape route in sight. It will be awkward conversations and well meaning gestures inflicting pain. It will be a constant reminder of that which isn't.

It's such a stereotype. Grief at the holidays. Google that - it yields over 13 million results.

At this time last year, we didn't know about the heart defect (December 20 was the fateful day for that little revelation). We were just excited to be having a baby. The tests had all come back clear. Everything was OK.

But it wasn't OK.

My baby died. It's not just a thing that happened. I've begun to think of it as a thing that happened, and it's not. It's not, it's not. it's not.

The holidays are like a minefield of triggers. Of annual events. Of people you see only once per year. Of things that are exactly like they were last year only now it's all completely different.

In between the tears was panic and hyperventilation at getting through the next couple of months.

I really didn't think I was still this sad. I hate that grief still has the power to completely overwhelm me, when I least expect it. I hate that the rest of the world has moved on, that most of the time I've moved on, and yet there it lurks - the pain, the guilt, the fear, the sorrow. Like a nightmare in the darkness just waiting to pounce and steal your breath.

It makes me sad, it makes me angry, it makes me guilty that what used to be joyous times are now something I am dreading like a root canal. I don't know if I can do it. I don't know if I'll wake up tomorrow and feel totally OK and ready to dive into the holiday spirit. I just don't know.

I didn't know I was still this sad.





Tuesday, November 12, 2013

Half a year

Dear Harper,

There's not a day that goes by that I don't think about you, bean.

I can't really believe it's been 6 months. It feels like a lifetime ago. It feels like yesterday. It feels like the half year mark should feel more significant. Like we'd reached some milestone of pain. But it's just another difficult anniversary. Marked by a letter from hospice noting that the six month mark can be a rough time.

I spent the six month anniversary of your death on Kangaroo Island, in Australia. A place where you can see billions of stars at night. And I thought about the ancient Greek myths where heroes are honored by becoming constellations. I thought about the idea of you as a tiny star, twinkling above us. I love that idea.

Not long after you were born, I thought of another Greek myth. Although I had to use Google to locate the name of the Hekatonkheires, I thought a lot about them - hideous, deformed monsters, exiled but beloved by their mother.

The night you were born, as the neonatologist's list of your deformities seemed to go on forever, all I could think was that I had given birth to a monster.

But I was wrong. You were beautiful. And like Gaia, I loved you with everything I had, every cell in my body, despite your deformities.

I felt horribly guilty many moments on Kangaroo Island. I would not have been there, admiring the stars, surrounded by exotic animals, excitedly spotting koalas in the tree tops, or splashing in turquoise water, had you lived. I wonder sometimes whether I'd still be loving you today, with all of your special needs, were you still alive, or would I have begun to resent the changes you'd brought into my life?

I like to believe, no matter what, you'd always be the little girl I fell in love with.

You still have the power to make me cry, Harper bean. And right now, in this moment, I can't think of anything I want more than to hold your tiny hand one more time.

I wish I could have brought you to see the kangaroos, too, daughter mine.

I'm sorry I ever believed you to be a monster, Harper. I'm sorry I wasted a single moment alone with you feeling sad and sorry for myself. You deserved so much better than that. I hope that, in the end, you were somehow able to sense every bit of love and loss I felt for you. I hope you know that I thought you were beautiful. A perfect imperfection.

You will always, ALWAYS, be my daughter. And there's always going to be some part of me that misses you. Every day.

Saturday, October 26, 2013

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?

Sunday, October 20, 2013

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.



Friday, October 18, 2013

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.

Tuesday, October 15, 2013

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.






Wednesday, October 9, 2013

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.


Monday, September 23, 2013

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.

Wednesday, September 18, 2013

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.

Sunday, September 8, 2013

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. 

Tuesday, September 3, 2013

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.




Monday, August 26, 2013

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. 




Wednesday, August 21, 2013

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? 








Sunday, August 11, 2013

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.

Monday, August 5, 2013

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.

Thursday, August 1, 2013

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.