Monday, July 21, 2014

Creeping horrors

Sometimes.

Sometimes I get really scared. Terrified. Panicky even. Worried that something terrible will happen to Shea or Soren.

That I won't be able to protect them.

I think about SIDS. About dropping Soren. Accidentally leaving him in the car. Shea burning himself on the stove. Or falling out a window. Or wandering off, getting lost, unable to find us.

Or any one of a million stupid things that could threaten the little ones I love most in the world.

("It isn't stupid,  mommy," I can almost hear Shea saying. They taught him that was a bad word in preschool,  and he's taken his role as the anti-stupid police very seriously. )

I think probably all parents have these thoughts. It's the parental equivalent of the "What Ifs" poem by Shel Silverstein. I had them with Shea, long before Harper entered my lexicon of feelings.

But, here's the thing...

I used to take comfort in statistics. The scientist in me, I suppose. When the What Ifs called, I knew what to answer back. Those are rare events. They happen to other people. They're distant. The odds of anything like that happening to my family are minute, and we'll drive ourselves crazy worrying about it.

Until the rare event happened to us, to me. To my daughter. The incredibly rare disease. The horrific headline of a baby dying. Until our experience introduced us to others, who's suffered similar losses.

The odds were not on our side. It wasn't happening to other people, distant strangers. It was us. It was people we know. 

Cliche it may be, but bad things do happen to good people. For no reason.

So, now, when I sit in the dark, listening to my beautiful boys breathing, when I look up from a distraction to realize that I don't exactly know where Shea is, when I leave Soren in the arms of someone who is not me...

Well, it's not so easy to take comfort in statistics anymore.

I had a terrible nightmare last night - I walked into their bedroom and they were gone. Shea and Soren. I ran everywhere trying to find him. Lou said I was crying and calling out their names in my sleep. 

When I woke up, I went to listen to them breathe, reassure myself all was well, but couldn't fall back asleep. 

I can still shove the creeping horrors away. But it's not like wiping a cobweb off a lampshade anymore. Now it's more like shoveling snow. No longer effortless, it takes conscious dismissal. 

Fortunately, the effort is helped by Soren's gummy smile. By Shea's exuberant hugs. By the smell of honeysuckle and the sounds of cicadas buzzing and the taste of rich chocolate and smooth wine and the wisp of a soft blanket and a loving touch and all the millions of little things that remind me that we're all alive and doing just fine, if not downright wonderful.

Today is my birthday. And I'm finding myself feeling - again - a strong need to celebrate. Every occasion last year was awash in pain, every holiday, every party, every celebratory moment. Too many reminders of what we had lost. I want to make up for that. Not to forget, but because as strong as my need was last year to mourn Harper and the sorrow I never wanted, this year the need is as strong to celebrate the advent of Soren and the joy and hope he represents. 

It is time to acknowledge that we survived. And the triumph over the creeping horrors continues with every milestone met, every family adventure, every comfortably happy day. 

If that's not a reason to celebrate, I don't know what it. 




Saturday, July 5, 2014

Hello, little girl

Dear Harper,

Fourteen months ago today we said goodbye forever, and I just wanted to let you know you've not been forgotten,  little bean. 

On a recent family walk, Shea was making up a long complicated game. It was called Rock, Talk, Walk, and I couldn't begin to tell you what the rules were or what play entailed.

But when he was dividing the family into teams, Shea made sure to include you and London.

"Even though they died, they still might want to play with their family," he explained.

Shea will always know you're a member of our family. So will Soren.

I still stumble over the question a little when people ask me if Soren is my first child,  a common enough question when out and about with an infant.

He's my second son, I try to say. Or, this is boy number two.

I never forget my body made you, too.

Soren has been the most healing balm imaginable. That baby's smile has the power to make everything right in the universe.

I wish I could see the two of you meet.

I have hung baby pictures of the three of you,  side by side. My three little ones.

Shea is an extraordinarily good big brother. I get glimpses of what life would have been like had we brought you home. How he undoubtedly would have brought me to tears with his kindness (and sometimes his jealousy).

I miss you still, bean, and I find myself wondering what life would be like if I could have had it all: my amazing Shea, my Harper bean born healthy and whole, and my chortling little froggy, Soren.

A pure fantasy. But a happy one.

Sweet dreams, baby girl.


Thursday, May 22, 2014

Remembering, forgetting

Soren is like a mushroom from Alice in Wonderland: from one side he helps me remember,  from another to forget.

I forgot the 18th of May. After a year of marking the days of Harper's birth and death,  I was too caught up in the daily effort of caring for Shea and Soren to remember. It was a day for new memories,  not dwelling on the past.

And yet....

I see her,  in the quirk of Soren's pinky finger. I feel her,  in the touch of his soft, shallow hair. I hear her in his squeaks and smell her when he nurses,  breathing in that uniquely baby scent.  I think of her,  in the dark,  pumping milk.  Lou and I are reminded when we see tiny, adorable girls and are reminded of what we'll never have.  This hits Lou especially hard.

There has been a romper missing. A tiny blue outfit that I remember Shea wearing. It's been cold,  and it's one of the few things we have in a newborn size with long sleeves.

I haven't been able to find it.

Until yesterday.

I was cleaning out the closet and ran into the hospital bag. A Vera Bradley bag,  gifted by my office,  for the express purpose of visiting Harper in the hospital. 
It was still mostly packed. Including that tiny romper. And I remembered. I'd packed that little outfit in anticipation of bringing Harper home the next day.  It was soft and the smallest baby suit we owned,  I thought it would be perfect to take her home in.

So much hope encapsulated in that bag.

So much hope encapsulated in Soren.

Last night,  I watched the movie,  Return to Zero. Trying to get it financed was a huge topic of discussion when I was spending time on the loss boards after Harper died. It's about the aftermath of a stillbirth.

It reminded me of all the well meaning but painful things people say to you after you lose a baby.  The anger,  the grief,  the numbness. The difficulty of being around pregnant friends,  babies.  The pain you're pretty sure will never get better.

But I watched it while nursing Soren. His eyes were bright and wide open, the focused stare of a suckling newborn. 

If not for losing Harper,  there would be no Soren. And even after just a couple of weeks,  that is unimaginable.

"Soren bean" Shea calls him.  He is not afraid or self-conscious about connecting Soren to his big sister. To Shea,  they are both his babies. One here,  one gone.

Dear Harper bean,

This feels like goodbye,  little girl.  Not because I will ever forget you,  not because you won't forever be a member of our family. But because this blog was to heal the pain,  to help me survive the madness of losing you.

Soren is a balm for my pain. I don't think I need this blog for therapeutic purposes any more.

I wish I could see all three of you together. Shea,  Harper,  Soren.

Here's hoping that in the far distant future,  there is a soft,  warm bed where we can all snuggle together. 

I love you,  Harper bean. Thank you for letting me be your mommy.

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