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. 

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.

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!

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.

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?