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 possible 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. Your 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 right 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.

Sunday, April 13, 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.







Saturday, April 12, 2014

If love could have saved you, you would have lived forever

It is a beautiful spring morning, a few hours before the sun will rise. It is cool, damp, the birds are beginning to sing sleepy songs, and you can, finally after an endless winter, smell the hopeful scent of flowers.

Every bit of me longs for sleep, for rest. But I have been driven out of bed by spawn-induced insomnia and thoughts of Harper.

I woke up drenched in sweat, our bedroom uncomfortably warm as the house adjusts to the new paradigm of spring and warmer weather. As the yoga teachers say, my mind was like a mad monkey, and rather than settling back down to sleep, I began to run through my mental to-do list.

And I thought about Harper's bushes.

We planted them on Mother's Day last year. They served as the backdrop of her memorial service, chosen in haste from a garden center because the blaze of pink azaleas reminded me of everything I wished my little girl could have had, every stereotypical girly urge that I didn't realize I had until I lost her.


They didn't survive the winter, unfortunately. And the failure of that stings me, makes me feel I have let Harper down once again.

But now, at 4 AM, I have become obsessed with replanting them. It doesn't matter to me that they're not the exact same bushes. I want that visible reminder, something I can point to for Shea and spawn to come to say "these help us remember our Harper bean."

And then I began thinking about benches. How nice it would be to have a little stone bench between them, So, it is now nearly 5 AM, and I have spent the past hour obsessively Googling stone memorial benches, because these are the sorts of irrational behaviors one engages in when awash in a sea of mourning and pregnancy hormones.

I haven't found the perfect bench. But I may have found the perfect sentiment to put on it, "If love could have saved you, you would have lived forever."

If only.

Shea cheerfully told our new neighbors today about Harper dying. We were on a family walk (or, in my case, waddle), and introduced ourselves to a recently moved in family, out doing yard work. Spring is like that; we suddenly encounter people we've not seen through the long, hibernating winter months.

After introducing Denver dog, Shea began the kind of monologue unique to small children, "We also had London girl, but she died. And baby Harper died, too. We had baby Harper, but she died."

He is rightfully proud that he remembers these things. That he gets his facts straight.

Sometimes I inadvertently confuse things for him. I've been struggling with constant headaches for the past couple of weeks, just one of the joys of late pregnancy. It finally got bad enough that I checked in with my doctor's office.

"Is this your first pregnancy?," asked the kind voice of the nurse.

"No," I told her, "It's my third."

"So, you have two kids?"

"No, I have one kid. We lost a child."

At this point, Shea, who had been eavesdropping near by, piped in, "No, you didn't, mommy. You didn't lost a child."

I  hushed him to finish the conversation, but when I hung up, he persisted. "But you said you lost a child and you didn't lose a child."

I explained to him how "lost" is another way to say someone has died, and in this case, I meant Harper bean. He didn't ask any more questions, but I wonder if that's what put the thought in his mind as he introduced himself to the new neighbors. Or maybe his brain is now wired to think Denver-London-death-baby Harper.

Soon, I will be up at this time nursing spawn. I suspect it'll be a lot harder to type and nurse at the same time, nor am I sure I would want to. It's different than the wee hours I spent pumping for Harper, hooked up to that awful machine, strategically placed pillow and laptop on my lap, trying to expunge my sorrow into a computer keyboard.

I don't know if this blog will survive the birth of spawn. If I will need the therapy of it anymore. Maybe that's OK.

The birds are chirping more loudly now.
Like the bushes, it will help me remember, make sure I don't forget.

Monday, April 7, 2014

The inability to whine

So, here's the thing about being pregnant after you've lost a child: you feel incredibly guilty about complaining.

After being blessed with a healthy, normal pregnancy, a second chance rainbow baby, it very much feels like I've lost my right to complain. I've now spent a lot of time with women who have experienced loss, or multiple losses, or are struggling with seriously ill children or infertility, and it makes many of them very angry when women who are having normal pregnancies complain about the downsides of being pregnant.

I get that. I've felt that, too.

But what do you do when you're, frankly, kind of miserable in the last few weeks of pregnancy? When that healthy, big, baby boy is crushing your pelvis, wreaking havoc on your internal organs, fostering agonizing heartburn, and just generally making you uncomfortable?

It makes me realize, ironically, how spoiled I was with Harper. She was such a tiny little thing, we never reached this last miserable stage together. Plus, I was so over the top with anxiety about her medical conditions and fear of her arriving early that I barely had time to think about my own condition. Every pain and twinge immediately made me worry something was wrong with the baby.

The spawn is not tiny. And he is making me intensely uncomfortable. I ache all over, and I can't sleep. Sometimes I catch myself thinking, "Am I done yet?"

And then I remember.

How desperate I was to get to the full term mark with Harper. How scary the idea of a premature baby with a heart defect seemed. How horrible life in the NICU was. How lucky I am to be pregnant again, with a healthy baby. How others I know are not so lucky.

So, I bite my tongue.

The anxiety doesn't help. The way I deal with anxiety is to get things done. It makes me feel better. It's why the days and weeks after Harper's death were a whirlwind of cleaning and organization and errands. Every fiber in me itches to combat the paranoia I feel about these last few weeks of pregnancy with similar activities.

Impossible to do when one can barely move. Swollen, lumbering, painful me is physically incapable of getting the stuff done that I want to, I need to, get done. It's part of what keeps me up at night. That, and the baby trying to break my ribcage and pummel my kidneys.

Everyone tells me to take it easy. Slow down. But I can't do it. When I stop, I think. And thinking is not good, right now. Thinking leads to worry. I'd rather be doing.

But I'm just so damn tired...








Saturday, April 5, 2014

11 months gone

It is the final anniversary of Harper bean's death before the arrival of spawn.

One month from today, I will be holding my son. Hopefully healthy and whole.

The month of April has already brought with it a flood of memories and milestones. One year ago today, I reached full term in my pregnancy. It was a huge milestone for me, and I remember feeling enormous relief that at least my baby would not be born prematurely. That, somehow, it was all going to be OK.

This weekend is the annual April show of the Sugarloaf Crafts Festival. I went last year, at this time, to distract myself from worry about my heartbroken bean and upcoming birth. I love this show - it's wear I bought my wedding ring, our dining room furniture, countless gifts, and half the art in our house.

Last year, I bought a dress.

It was black and artsy and stretchy and unique. "Hopefully it'll fit," I remember joking with the artist, "since I clearly can't try it on now!"

The first time I wore it was to Harper's memorial service.

About this time last year, we went to Opening Day at Nats Park, as we did yesterday. We joked about going into labor at the ballgame.

At least the sea of Harper jerseys no longer causes me pain. At least, not more than a twinge.

I can't believe it's been almost a year since we lost her.

I wonder a lot about what these anniversaries will be like after spawn is here. Will my calendar feel as haunted?

Is it OK if I forget a little?

My spawn paranoia is getting worse. I keep myself busy because when I'm not, I think about everything that can go wrong. The heartbeat just stopping. Listeriosis. Deafness. Blindness. Heart defect. Getting caught on the cord.

Fortunately, spawn has been reassuringly, painfully active. No missing that he's alive and kicking.

Except for right at this moment. Right at this moment when he's not moving at all, and I am trying not to think too much about it.

26 more days of waiting.