Sunday, May 4, 2014

Soren

Dear Harper bean,

Forgive me for not writing sooner, baby girl, but I figured you've been here all along with us, in spirit.

You have a baby brother, and his name is Soren Kinnor. He is about as happy and healthy a baby as there ever was, continuing to do his best to be the perfect, reassuring rainbow. Ten fingers, ten toes, passing every test by a landslide.




Soren - because we liked the name. And Kinnor, for you, Harper. Your Hebrew name, the closest equivalent to Harper we could find.

We always want him to know that he once had a sister. Without you there would be no Soren. And now that I am head over heels in love with our beautiful baby boy, I realize you have given us yet another gift. Thank you, little bean.



He is a demanding little guy. Wants to eat all the time, unlike either you or Shea. Which is good, because it leaves me less time to think about this place being haunted. Our room is down the hall from where we stayed with you. All the nurses are familiar, although I don't think we're recognizable to them. Identical breast pump, are that hasn't changed.

I wanted to have a happy ending here, in the place where we lost you. And Soren has exceeded my expectations.



I'm exhausted and overwhelmed and still a little sore from surgery, not too mention being quickly reminded of the uncomfortable days of early breastfeeding (particularly with your voracious little brother!), but I couldn't possibly be happier.

He is everything we wanted for you, Harper. And we will do our best to make sure our boys have long and joyful lives.

As one famous Soren (Kierkegaard) put it, "The highest and most beautiful things in life are not to be heard about, nor read about, nor seen, but, if one will, are to be lived."

To you, Harper bean, we dedicate this gorgeous, breathing creation, and we will try to do enough living between us for you, too.

Love, Mommy


Wednesday, April 30, 2014

48 hours until spawn

Another night, another 4 AM wake up.

This one started out as Shea's fault - his blankets needed adjustment, and he called out for daddy. But I found myself unable to fall back asleep, filled with a million thoughts a moment, distracted by the roar of thunder outside.

We need to install the infant car seat. I need to set my out of office reply at work. My house is a mess. Laundry to put away. Do I have everything I need in my bag? Will Shea be OK while I'm in the hospital? I need to deal with the content of my lost wallet. I have to stop at the post office. Shea needs to make thank you cards for his birthday. Grocery shopping.

And so on, and so on, and so on...

One year ago today, we found out Harper was dying. Definitively. Dr. Porter left no room for doubt.

Of all the dates that I remember, I'm surprised I remember this one. But I do.

In 48 hours, we will be heading to the hospital for the arrival of spawn.

The calendars no longer exactly align. It's jarring. I'm above and beyond excited to be meeting spawn. Even more excited to no longer be pregnant. A little worried that being at Georgetown will feel strange and sad. Wondering if I'll recognize any of the nurses. So much of our time there is such a blur of people and emotions.

I remember a moment in the hospital, friends visiting with their little boy. Ordinary talk of children sent me sobbing, reeling.

Add packing the waterproof mascara to the list.

Right now, I'm moved easily to tears. Feeling disproportionately stressed over little things. Hurting, hurting, hurting physically all the time. But too restless to take it easy, to relax.

It is not hard to be reassured, because spawn is the chief source of pain sometimes - clearly too crowded, he stomps on viscera and stretches me beyond capacity with impunity.

But in these wee hours of the morning, I worry. I worry about something going wrong, some new, unexpected diagnosis.

It's not likely to happen. But it could. It did.

Today, I learned the cardiologist who first saw Harper, who discovered the heart defect that marked the first chapter of this journey, lost her own life. Tragically young, leaving behind a small child and a baby. She was kind, compassionate, smart, reassuring. I still have her card among Harper's things. Lou and I both remember being envious of her healthy pregnancy as ours crumbled around us. Her loss is unimaginable, and I can't comprehend how difficult it must be for her family and friends.

There is untold value in a reminder about the preciousness of every day we get to experience the loved ones around us. It is too, too easy to get caught up in the minute annoyances of everyday living. I'm totally guilty of that, even with Harper's squeaky cry echoing in my ears, even with the litany of SLOS related sad news, even with the kicks of my rainbow taking my breath away.

48 hours from now, I could really use a good, old-fashioned happy ending.

Right now, I could really use some sleep.





Sunday, April 27, 2014

Due date

April 26. The due date of two of my babies. One enthusiastically celebrated his fourth birthday on his due date, one is not here. One alive, one dead.

When I was pregnant with Harper, I felt like April 26 was a magical day. What were the odds of having the same due date twice?

But there was no magic to help my bean.

Shea's birthday will always be exactly one week from both his siblings. I wonder if this time period will always contain a slurry of emotions and memories or if that fades at some point? What will our tradition become for celebrating Harper's birthday,  mourning her death?

Too soon to tell.

Shea sang and bounced on my bed this morning,  still riding the high of birthday euphoria. Spawn pushes and shoves and signals his impatience with his crowded living quarters. And Harper? She occupies my thoughts.

Only 6 more days.

Friday, April 18, 2014

Happy birthday, Harper bean!

Dear Harper,

Happy birthday, little bean!

I feel like nothing I write today could possibly be adequate. Words cannot possibly contain the complexity of marking your birthday, the birthday of a child who no longer exists. Who never experienced a full month of life, much less a full year.

How can I explain to you how I managed to survive this year in your absence, when I can't even understand it myself?

Carrying on the tradition of writing an annual birthday letter to my kids is proving tough when it comes to you. In all of Shea's letters, I tell him what he's like, how he's changed over the past year, what his favorites are. I don't have any of that for you.

I also tell him how I feel about him, how much I love him with every cell in my body. That I can do for you, my bean.

A beautiful birthday gift, from a dear friend, little bean. 


I miss you. Seems silly, given I barely knew you, but this anniversary has hit me hard. I feel like I should be baking your first taste of birthday cake - Passover be damned! - and getting out the next round of clothing.

Early this morning, cuddled with Shea, we talked about you. Shea wondered if the fish in the pond near your tree had grown any bigger. "Maybe we should check on them," he suggested, "And check to see if Harper's tree has flowers."

Your big brother surprised me with the clarity of his memory of meeting you. "Remember when we visited baby Harper at the doctor's and they gave us books to read?", he said. "That was very nice!"

He's exactly right. The staff gave him a copy of Ferdinand the Bull, and I read it to both of you, while you both sat on my lap. The one and only time I was able to do that.

Your daddy and I celebrated your birthday with an unveiling at your memorial stone. We decided to make it private, just the two of us. And you, of course. It struck me that this is the closest we've come to being alone with you. We never had that when you were alive. We were always in the NICU, surrounded by people and other babies, noises in the background, even during the hushed graveyard shift hours.

For your birthday, our present was some time alone with mommy and daddy.

It was beautiful. Daddy cleaned off your stone and set out the beautiful hydrangeas we'd brought.



And then we remembered. We talked about our time with you, our memories of the day you were born, good, bad, and confusing. Your daddy felt it all happened so fast, and yet it feels like years ago. I feel like we've lived decades in a short period of time, like that 17 days lasted a lifetime.

"We should have brought her home," your daddy said. He wishes he had spent more time with you at the NICU.

We had no way of knowing, Harper bean, we would only have those 17 days. We spoke about that last day, about my regret for not staying with you longer, when I felt deeply how very sick you were. About how happy we were that you hung on until we could arrive and hold you. About the road work in the middle of the night that nearly ruined it all, the lost parking ticket, the disbelief that it was all over so quickly.

As I stared at your stone, I was overwhelmed by the beauty of your name. Your daddy agrees. If nothing else, Harper Merrick, we gave you a truly beautiful name, and I love to see it written in stone for all time. Harper Merrick Wolinetz. A beautiful name for a beautiful baby girl.



Speaking of your name, on the way to our unveiling, we stopped at a market to buy the flowers and some fruit to deliver to the NICU nurses and had an odd coincidence. As we stood choosing produce, I was startled to hear someone call Harper. There was a little girl, about four, I'd guess. As she prepared to ride a toy horse, her mother cheerily  said, make sure you tell the horse your name. "Hi," said the little girl. "My name is Harper." It make me smile and tear up all at the same time.

At your stone, we cried, we laughed, we told stories, we said the memorial prayer and mourner's kaddish. We looked at pictures and relived our moments together. We talked again about how lovely it was that our friends and family put this stone in place. "This is what I wanted," said daddy. "Someplace we could go, to remember."

Going back to Georgetown was harder than I expected. Truthfully, between teaching and doctor's appointments, I'm there all the time. But today was different. I could feel you there. I was flashing back to our time together in the NICU, the hours in the mother's lounge, the uncertainty, the joy, the fear, the sadness. I missed you.



"Are you coming to the reunion?", asked the receptionist, as we dropped off the basket of fruit and candy we'd put together. It was important to us, Harper bean, to honor your memory by saying thank you to all the people who took such good care of you, such good care of us. Even as it felt impossible to be there, too full of memories, too sad.

"Our baby passed away," I told her. "That's OK, you can still come," she said. Then she paused, "Or you can come to the memorial service."

Although I was ready to turn around and run away, far, far away, we paused to collect information about the NICU memorial service (we skipped it last year). It was brought to us by a nurse I remembered. One who gave you loving care, Harper bean, and told me she loved your name. Who was quick with a tissue and a smile when I needed it. She was happy to learn about spawn. "Come let us know, when he's born," she said. "Let us know you're all doing OK."

I lost it as soon as we passed through the hospital doors. I'm sorry I couldn't hold it together for you, little one. I wanted to badly for that visit to just be about the joy of your life, but there was a moment of being overtaken by your loss.



I wish I could write you the letter of how much you've changed over this year, Harper bean. I want to tell you about the first time you smiled, about what your first food was, how you began to giggle. Whether or not you can walk.

I feel robbed and sad and aching to hold you again. At the same time, I am glad to at least have had the chance to have met you. I'm glad we found you such a gorgeous name. I'm glad you are no longer in pain, no longer struggling with the broken, little body that nature had the misfortune to grant you.

I spent much of your birthday longing for silence. For quiet and peace. Something else you never got to experience in your lifetime, because you were always surround by beeping monitors, hissing oxygen, quietly efficient nurses. I hope your forever sleep is peaceful and soft, like a welcoming bed, piled high with down blankets. My vision of heaven is snuggling in such a bed with you and Shea.

Tonight, we had a family dinner in your honor. We wore our pajamas, all of us. This is partly because your brother, Shea, has recently become obsessed with flannel pajamas. But it seemed fitting, since pajamas were all you ever wore. I cuddled your brother and felt spawn kick and wished you were here with us.

Your birthday did not go unnoticed by all the people you touched, little Harper. You received messages of love and remembrance from all around. In your tiny life, never leaving the NICU, never saying a word, you touched an enormous number of hearts. I'm so proud of that, of you.

I'm crying as I write this, tears pouring nonstop. I cry when I write Shea's letter each year, too. Different kinds of tears, but not unrelated.

Crying for the might have beens, the never agains, the should haves, the what ifs. Crying because I can still feel your soft hair fluffs tickling my face when I kissed your head.

Crying uncontrollably in the car when Kansas' "Dust in the Wind" came on the radio. "Don't hang on, nothing lasts forever but the earth and sky."

Today is your birthday, Harper bean. One week from today, your brother, Shea's, birthday. Two weeks from today, spawn's scheduled arrival. You will always be connected: by love, by calendar, by memory.

"I wish baby Harper hadn't died," Shea said several times today.

I asked him what he thought we should do to celebrate your birthday.

He thought about it for a while. "I think maybe we should go to her tree and bring her a present. We could tell her about my trains, too," he told me. "How about that?"

How about that, Harper?

We love you, bean. We miss you every day. Happy birthday, Harper.

Love, Mommy

Thursday, April 17, 2014

Having a rough

And it's right back to crying.

Tomorrow is Harper's birthday, and I'm a wreck. I've spent the whole day fighting back tears or sneaking off to succumb to them. I still don't fully understand the ability to go from normal to full on grief in no time at all, tripping over a date on a calendar.

But here I am.

Today is the first time I've found being pregnant to be a major unwelcome distraction. Spawn's movements, the aches, the heartburn - I don't want to deal with any of that now. I just need to cry, to mourn, to scream, to feel. Being excited or happy about one baby feels like such a terrible betrayal to the baby we lost right now.

Lou keeps asking me what I need, and I don't know.

I want the pain to GO AWAY. I want to be less of a sobbing, snotty mess.

I want to hold Harper again, just one more time.

Tomorrow should be about birthday gifts and baby's first cake and cruising around furniture and babbling sounds.

Instead, tomorrow will be about unveiling and visiting memorial stones and bringing treats to the staff in the NICU. Lou wants logistical details - "what's your vision for tomorrow?" - but although normally my strong suit, I can't handle that now. I don't know what the timeframe for tomorrow will be, because I can't even grasp how I'm going to make it through tonight intact.

I don't want to feel this way anymore. I am so damn sick of crying. At the same time, I want the whole world to cry with me. I want the universe to stand up and howl because my daughter is gone and she is never, ever, ever coming back. I want to see my pain mirrored in the eyes of everyone I encounter, so we can all fall into a wet, messy heap of sobbing until we can't cry anymore.

IT SUCKS, IT SUCKS, IT SUCKS, IT SUCKS!!!!!!!!!!!!

The numbness is better.

All of the details of a year ago are so hard to remember and so impossible to forget. Was Harper kicking the night before we went to the hospital? Did I talk to her? Did I think about meeting my baby boy, as I thought she was at the time? Or was I too anxious, too worried about the heart and the feet and the NICU?

Those worries, the hours spent researching, all seem so ridiculous in retrospect.

They say there's no wrong way to mourn, to grieve. But the problem is, there's no right way either. There's no guidebook, no normal, no typical. You are forced to make it up as you go along, which means there are lots of nasty surprises along the way. Breakdowns, ugly cries, weeping in parking lots, snapping at those around you, unstoppable fits of sobbing.

Wounds you thought healed suddenly as raw as the day they first appeared.



As Shea was taking a bath a couple of nights ago, he was chatting happily about the cake we'd brought home from my office baby shower. "Do you think we could have more of baby Harper's cake later?", he asked.

"Sure," I told him. "But it's the new baby's cake, not baby Harper's."

"Oh," he said. "Sometimes I get confused."

"That's OK," I reassured him. "It is confusing. Harper was the new baby for a long time. I can see how it would be easy to get mixed up."

"I wish Harper hadn't died," Shea said. "And I wish London girl hadn't died, too."

"Me, too."

He wrinkled his forehead, thinking. "I think that if this new baby dies," he told me, "we shouldn't have any more babies."

I felt like my heart stopped beating for a minute. "Don't worry," I told him. "This new baby won't die."

This morning, in the midst of a crying jag over something trivial, I felt horrible for crying in front of Shea. "Why is mommy crying?", he wants to know. It was easier for him to understand my sadness over Harper when she was with us or recently gone. But I think it confuses him now. We have anew baby coming, Harper is more of an abstract concept to him now - I don't think it makes sense to him that I'd still be sad.

Sometimes, it doesn't make a lot of sense to me, either.

I have people I need to be strong for. Things I need to do. I can't spare the tears, I can't spare the time.

And yet...

Maybe this is what honors Harper. Maybe this is really the truest sign of her spirit.

That my little, complicated, broken bean has the power to wreck me, a full year later. We needed to let her go, she was so very, very, very sick, but even knowing that, I fell in love. And I can say with all honesty that I miss her. I wish I could hear her and touch her again.

I wish she'd been born healthy and this year had never happened.

Or do I?

Emotion and exhaustion is making me ramble. My thoughts are all over the place tonight, and I don't foresee a lot of sleep in my future. I feel like I owe it to Harper to get it together. To bring a perfection to her birthday - from unveiling and beyond - of the sort we were able to bring to her memorial service.

But I am just feeling so shattered, so scattered, at the moment.



I wish....

I don't know.

I just wish.

Maybe Walt Whitman had it right. "We were together. I forget the rest."

Wednesday, April 16, 2014

Passover

The Huffington Post had an article this week about a family who lost their baby, a little boy, and for years after, struggled with the Passover seder and it's attention on the plague of the firstborn son.

At our seder this year, we introduced a new family tradition: an empty place setting in honor of Harper. This was helped by the addition of a beautiful plate made by Lou's family, reading "Harper: Forever in our hearts, forever at our table."

Like Elijah's cup and all the symbols of the seder plate, it is a way of remembering, of connection, of never forgetting the pain of the past while celebrating the joys of the present and future.

I had a lot of trouble keeping it together as we described it to our guests during the service.



Inevitably, Passover will always occur near this emotionally laden calendar period encapsulating Harper's birth and death. Even in the absence of this new tradition, I'm not sure I'll ever not be thinking about her at this time of year.

Harper's Hebrew name was Kinnor Miriam. "Kinnor" is the closest Hebrew translation to Harper. We chose Miriam because it has a dual meaning of "wished-for child" and "Sea of Sorrows" - a dual meaning that summed up nicely our feelings about Harper. Miriam is, of course, a major part of the Passover story, and very much a presence at our holiday table.

For all those years of hosting seder, it never occurred to me to wonder what Miriam's name meant. I've thought about it often the past few nights.

We rush through our seder. It's a natural consequence of having a small, impatient child and not being terribly religious people. There's not a lot of time for contemplation and debate.

But this year, I was caught be a line in one of the readings, about Miriam, in fact. "Ana El-na refa-na la" is the transliteration, and it means "God, please, heal her, please!" It was a plea by Moses to heal his sister, Miriam, of leprosy.

There is something in the desperation of that prayer that resonates with me. It was the sort of miracle you can't help but hope for when your baby has no hope to live. Its echoes remain in the constant hope that everything will be OK with spawn, that nothing will go wrong.

Desperate hope. There's something tremendously sad about that phrase.

This week we will remember. Not only because of our new seder tradition, but also because this is the week Harper would have turned one.

A week of crying at the drop of a hat. Because that's just the way it goes. Putting the salt water on the seder table to shame.

L'shana Haba'ah B'Yerushalayim.

Monday, April 14, 2014

Always, Always

What is it like, to lose a child?
A baby?

It is crying, nonstop, out of nowhere,
Pain and terror and sadness,
At first ever constant, then fading,
To lurk always in the shadows of consciousness.

It is sleepless nights, manic days,
Numbing, inappropriate emotions,
Ill-fitting mantle of exhaustion,
Inescapable, haunting memories,
Of sound and smell and touch,
Desperate grasping at sensation,
I'm not ready to forget.

It is the searing brand of remembering,
Harsh and gasping breaths,
Bubbling milk, cruel suction,
The moment the breathing stopped,
The feel of death in my arms,
Orange, pale skin, bustling hushed nurses,
Harsh and gasping sobs,
Helpless goodbyes.
The long ride home.

The stuff of nightmares,
Crying babies that cannot be reached.
Memorials to be planned.

It is a cognizance of dates,
Anniversaries,
Jutting out from the calendar,
Like shards of broken glass,
Waiting to cut, to shed blood,
To toughen into scars.

It is the tangy, metallic taste of envy,
Sorrowful flinching at the sight of babies,
Irrational anger at those without pain,
Self-disgust and joy and soul-clenching sadness and happiness,
Simultaneously.
Hugging my own child,
A moment too hard, too long,
In fear and gratitude and desperate longing.

It is a hole, never to be filled,
In the family portrait,
A name, longed for, seldom used,
Never the same,
Retired like the jersey of a baseball legend,
Longing for life.

It is awkward questions,
Painful conversations, kind words,
Rote responses,
Struggling for words, for balance,
Rethinking what should have been said,
Or left unsaid.

It is the trauma,
Not being able to forgive,
For a vulnerable moment, badly handled,
Perceptions altered, maybe forever,
Unhealing, pustulant, emotional sores.

It is gaining a family you never wanted,
Sisters and brothers in loss,
Hands to catch, wisdom to share,
Hard-earned, unenviable,
Compassion and recognition.

It is healing, survival,
The realization that one day
You're more likely to laugh than cry,
Holding a baby with only a glimmer of pain,
Feeling the weight of the future,
Heavier than the past.
Gratitude for virtues learned,
Strength gained, self-discovery.

It is regret,
Always, always regret,
For what might have been,
For what will never be.
Always, always missing her,
Even as there's relief for pain spared,
Hers, mine, ours.
Always, always wondering,
Did she know? Did she feel?
Did love matter?

It is not knowing when the end begins,
Does mourning fade?
It is ritual,
One day at a time,
Wondering how grief feels,
At two years old, at ten?

It is knowing, without any doubt,
I will never again feel those tiny fingers,
Wrapped around mine,
No more tickly hair fluffs,
Pursed lips, bitty squeaky cries,
She will never know home.
No more hiccups, milky bubbles,
Fluttering eyes, soft cheek stroking,
Precious cuddly body against my skin,
Ashes only now.

It is tears,
Indescribable,
Nonsensical,
It is what it is.