Monday, November 3, 2014

The End

Dear Mama,

Hello, stranger.

I know you.

I was you.

Desperately Googling. Scouring the internet. Stumbling upon blogs, just like this one, discussion boards, threads of conversation, medical sites, scientific publications.

Searching for hope. Searching for reassurance that it'll get better. That it'll be OK.

You can't sleep. Or you need to distract yourself from the constant beeping of the monitors, the hiss of oxygen, the miles of tubes that is the NICU. You're mad with grief, missing your baby, wondering why this is all happening to you. Wondering if the fear and the pain and the sorrow will ever, ever end.

Maybe it's a bad prenatal test result. A scary diagnosis. A terrible prognosis. A dying baby. A child lost.

Your life has just fallen into a million sharp pieces and you have no idea how or whether to pick them up again. All you know if you need to DO something. Find something. Feel better.

And maybe you find yourself here.

Today my rainbow turns 6 months old. Today seems like a good day to say goodbye to this blog.

The end.

I began this blog in part because I needed a therapeutic outlet to vent and express my fear and sadness. But it was also begun as a conscious decision to pay it forward. I found such a wealth of knowledge and experience and hope in other mother's blogs. They meant the world to me at a time when it felt like everything was going horribly wrong.

Even when it seemed like our only problem was a heart defect that needed to be repaired, I had this vague notion that someday my experiences might prove useful to another expectant mother, up late, desperately searching for answers.

And so this blog was born.

I don't need it anymore. But you, mama - stranger to me - you might. So I didn't want to leave it without letting you in on the happy ending. I got to the end of too many of those blogs, too many of those threads, only to find there was no ending.

A year ago, I was still too scared, too sad to believe in happy endings.

My rainbow baby boy is 6 months old today. He is the joy of my life. The smiling-est, happiest, most lovable baby that ever was. And I am happy.

It was not long ago, I was sure the world was ending. (It didn't.) That I would never be able to stop crying (I did.) That my heart would never be strong enough to heal, much less love (It was.)

And so I spent so many, many sleepless nights, rooted to my computer. Feeling my baby kick, pumping breastmilk, mourning my daughter, sick with fear for my son. Searching endlessly for the magical words that would make me feel that, against all odds, it would someday be OK. That the scars would heal. That I would find joy in the universe that had let me down with such startling, horrifying abruptness. That life would someday feel normal again.

So here are the words: Life is normal again. The End.

But I can't leave it there entirely, because the other thing this blog has become is an outlet for those yearly letters I will never get to write to Harper. It is for her to have the last word.

Dear Harper bean,

In the whole history of little beans, no bean was loved as you were loved, my Harper bean.

I think about you every day, I frequently wonder how different our life had been had you not died, or if you had not been born with SLOS.

But mostly, when I think about you now, it is with gratitude. 

I've said it before, but it bears repeating: without you, there would be no Soren. There would be no wide gummy smiles, or snuggles against my neck, or moments watching Shea adore and entertain his little brother. 

I will forever be grateful to you, little bean, for the existence of that brother that should never have been. 

Thank you, Harper. 

I promise that Soren and Shea will experience all the things that you will never be able to. They will live and laugh and love and play and travel and enjoy life. And as I experience the world again through them, I will always remember you. 

Even as this blog goes silent, you will never be forgotten. You were here, you existed, and you will be a part of our family forever. 

Harper Merrick, she of the beautiful name, of the broken heart, of the squeaky hiccups. 

A few days ago, I took your brothers to urgent care (Shea had an ear infection), and a nurse asked me if I had any daughters. "Not anymore," I replied. 

She didn't pick up on the allusion to past tense and simply said, "That's too bad, because your sons are beautiful, and a girl who looked like that would be gorgeous."

She's right. The boys are beautiful. And you, Harper bean, were gorgeous. 

I promise that every year I will honor your birthday, and that I will do my best not to lose sight of all of the important lessons you taught all of us whose lives you touched. 

Your six fingered hand will always have a hold on my heart. 

Love, Mommy

Sunday, October 5, 2014

Seventeen months and counting

Dear Harper bean,

The fifth of the month is always hard. I wonder if it always will be? Even random, not terribly symbolic anniversaries like the seventeenth mensiversary of the day you died somehow carry extra weight.

In the weeks following your death, I frantically organized and packed baby clothes. I have a distinct memory of weeping over one tiny outfit. I bought it after we found out about your heart defect,  before we knew about everything else that had gone wrong. I bought it makr myself feel excited about the broken hearted little baby on the way.

I packed it away, unworn,  soaked in tears of what never was.

I forgot about it.

Until today.

In packed it in the wrong box, little bean. There it was,  among the six month clothes I was sorting through for your brother. Still unworn,  still adorable.

Size newborn.

Soren will never wear it. And I wept over it again. For what never was. For what never will be.

And I flashed back to a time when being around tiny babies and tiny clothes made me so, so, so very sad.

Thinking of you tonight,  Harper bean. Thinking of you.

Love,  Mommy

Friday, September 19, 2014

Fading and touching, touching and fading

Dear Harper,

Yesterday you would have been 17 months old, and I spent a lot of time thinking about you.

I feel like your memory is fading and that scares me. As Soren grows more real and heavier in my arms, your memory seems more insubstantial, like a whisper, a ghost. Something I can't quite grasp or feel.

At an event yesterday, I was listening to the story of the benefits of mothers touching infants, and I suddenly recalled the moment that broke me, when we first met with Dr. Porter, the NIH SLOS expert. Children with SLOS, he told us, seem like they don't want to be touched. It's part of the disease. He also told us to not pay attention to that, to hold you, to cuddle you, even if you took no comfort with it.

The tears started to flow.

We did hold you and cuddle you and kiss you. And maybe it was wistful thinking, but I felt sometimes like you were soothed in my arms. Like you recognized your mother's touch.

Now, I worry that I don't really have that physical memory anymore. That it's been banished by the very real feel and touch of the baby who is here.

But even as my hands lose that memory, my heart is constantly reminded.

"Is he your first?" "Two boys - are you going to try for a girl?" "Four years: that's a good age gap, was it deliberate?"

Well meaning questions, faced on a nearly daily basis, are constant reminders of losing you. And they always, always, always cause conflict.

There is no good way to answer.

"I have a four year old son, I think we're done, it is nice to that Shea's more independent."

Honest answers, but each one feels like a betrayal to you. On the other hand, it isn't comfortable to tell your story to strangers in casual interactions. That also feels like a disservice, and one that I'm not sure my heart could regularly withstand.

Sad and guilty if I do, sad and guilty if I don't. The ultimate grieving mother's catch 22.

I caught myself recently when someone asked how life with two kids was going. "Well, they're both still alive, so far!" I almost flippantly said.

I froze before I said it, and I understood, for the first time, the phrase about words turning to ash in your mouth. Because you weren't alive. I hadn't succeeded in the minimal parental effort of keeping all of my children alive. Not that your death had anything to do with my abilities as a mother. But making light of child survival felt like the worst betrayal of all.

I read the struggles faced by other SLOS families, with living children, whom they may never hear speak, and I wonder whether I would have been strong enough to face that.

Sad and guilty if you'd live, sad and guilty because you died.

Even on days when I can no longer feel you on my skin, Harper bean, I feel the hole you left in my soul. Love, Mommy

Monday, August 18, 2014

Parenting expectations after death

Harper would have been 15 months old today.

After your child dies, you spend a lot of time imagining what moments with them would be like. In your imagination, every moment is magical, perfect. In your mind, you tell yourself that if that child was here, to experience that moment, you would be the perfect parent, you'd savor every minute of every day together.

Intellectually, if you have another child, you know that this is totally not in keeping with reality.

I lose patience with my kids sometimes. I get exhausted. I yell. I bicker with Lou. I long for time to myself. I get impatient. I feel sorry for myself. There are occasional moments of resentment when professional opportunities war with family responsibilities. I miss my privacy.

And I feel insanely guilty now in a way I never did before.

The self-imposed pressure to be a perfect parent after you've lost a child is indescribable. It's also likely exacerbated by my control freak, type A, overachieving personality.

Every mistake I make as a parent now, every careless moment, every infinitesimal imperfection, I see in light of doing a disservice to the second chance I've been given in the wake of Harper's life. The second chance in my appreciation of Shea. The second chance in my rainbow baby, Soren.

I recognize their preciousness in a way that I think is really unique to a parent that has lost a child.

And yet there are times when I still feel like I fail them. When I want to take back a moment and do better. When I hear myself speaking or experiencing a half-hearted action, and I cringe.

Shea and Soren.

They are extraordinary, the best reflections of everything that is joyous in the universe. I derive an incredible amount of happiness from their smiles, their scents, their discovery of the world around them. I think the phrase "bursting with pride" was coined by a parent, because their very presence sometimes fills me to bursting.

I watch them as they lay sleeping, listening to the sounds of their breath, and I can't believe I played a part in their existence. Word are inadequate to describe my love for them.

Part of being a parent seems to be learning that the depth of that love does not always translate to everyday, minute by minute ideal behavior. And post-Harper, I'm finding that an even harder lesson to swallow.

This is my last week of maternity leave, and I find myself aching in a way I never did with Shea. With him, I worried about daycare, I fretted about his care, I mourned the milestones I missed. But I also appreciated the time away. Time amidst adults. Being good at my job. The intellectual engagement.

But Soren... Soren, I will miss. Every hour of every day.

Maybe it's because of Harper. Maybe it's because Soren is such a very good baby, a pleasure to spend time with. Easy in a way Shea never was. Is that because I'm more confident as a mother, or is it innate to his personality? I don't know. But I will miss his smiling face, our cozy naps, his sweet, milky smell. The tickly feel of his now rapidly growing baby hair.

There is also a feeling of finality.

The last baby. The last first time of everything. The last use of the newborn clothes, the last little baby fingers desperately clutching my hand as he nurses, the last sleep in the bassinet.

The overwhelming desire to just make more and more babies - because they are so very precious - clashes with the feeling that I can't even do justice to the two (or is it three, Harper bean?) that I have.

Did they do this in other eras? Beat themselves up over not being fully engaged in being the best parent every single day?

I've often wondered how mothers of other eras handled the much more pervasive death of their children. Losing one felt like an abyss had opened up at my feet - how does anyone survive more?

I've often joked that parenthood is like alcoholism: you just take it one day at a time.

I guess that's still true. All I can do to honor Harper is try to be the best I can be for Shea and Soren. To hug them a lot, cover them in kisses, listen to what they say, take them on adventures, soothe their fears, sing them songs, be silly with them, and always be ready with a story. And to try to forgive myself when those imperfections arise. To try to remember that I am human, and perhaps a pretty flawed one, at that.

Today I did well. Tomorrow, I will try to do better. 

Tuesday, July 22, 2014

Creeping horrors


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.