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

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

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

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. 

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. 

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.

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.

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

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.

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.

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

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."

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.

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.

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.

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...

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.

One month to spawn

One month from today, we will meet spawn.

Time feels like it is dragging by so very slowly, punctuated by big baby kicks.

I remember taking it one day at a time with Harper at this stage, thinking "if only I can keep this baby inside one more day, her chances will be so much better. "

(Little did I know prematurity would be the least of our concerns, in the end.)

Shea managed to somehow hit a button on our voicemail yesterday that resurrected old, saved messages. I listened to a message from the perinatologist about a CVS appointment, a little stunned.

"I can't believe that's still in there," I told Lou.

What's the big deal, he wanted to know,  it probably just didn't get deleted. It wasn't that long ago.

Not a message about spawn, I told him. Wrong doctor. That was a reminder about the CVS for Harper. From the day we got our first clue something might be wrong. October 2012. Still there. Lurking in the voicemail.

I wonder how many more emotional landmines I will run into between now and spawn's birth?

Stupid irrationality

Something stupid happened this week.

Shea was sick and missed a few days of school. No big deal, he bounced right back.

Except it ended up being a big deal, because the consequence of this is he missed the narrow window of enrollment for his karate class. Shut out. For stupid, bureaucratic reasons.

On one hand, whatever. I can intellectualize it. Tell myself he's 4, he's adaptable, this is such a first world problem, it's not really that big of a deal. It's not like he's training for the Olympics, for god's sakes.

But if I have learned nothing else over the course of the past year, it's that emotions are totally irrational.

And my irrational emotions tell me that I have totally failed. Again. I blew it. Not only was I completely helpless to save my daughter, but I have to tell my son something that I know is going to upset him greatly, even for a short period of time, because of something I didn't do.

Worlds apart in terms of magnitude, but in my mourning, pregnancy-hormone-addled heart, they kind of feel the same.

The thought of that, the thought of failing another one of my children, even in this small, stupid, meaningless way, is crushing me. If I was not so busy weeping, I'd have to laugh at myself. Crying over a karate form. Good grief.

Another example of never knowing where grief will sneak up on you.

The idea of explaining this situation to Shea - probably over and over again, because that's the way it works with 4 year olds, makes me feel like the old train in one of his favorite books:

I cannot, I cannot, I cannot...

In truth, he'll probably be totally understanding, because that's the type of kid he is. "That's OK, Mommy," he'll often tell me, when I apologize for a slip up on my part or disappointing situation.

He's a great boy. And that makes me feel worse.

The angry part of me is pissed at the bureaucracy of it. It's a bad system, and we got screwed because of it. We were responsible enough to follow the communicable disease policy of the school, and Shea is paying the price now. Angry, carefully worded emails, expressing our displeasure, have been dispatched.

But the raw part of me tells me I should have done more. I should have dropped off the form the one day he was in school that week. I should have dropped off the form, even in his absence. I should have done something. 

Surely there must be something I can do to fix this?

As with Harper, the answer appears to be "no." Nothing to be done. It is what it is.

And the irrational part of me cries and cries, even as I recognize this whole thing is just all so very stupid. So not me, or who I want to be. But irrational stupidity is enough to keep you up at night. As if I needed another incentive for insomnia.

Meanwhile, on the SLOS board, there is an effort to collect all the names and dates and addresses of babies lost to this disease. A sad list that has been getting longer throughout the day. I've not yet added Harper's name. I'm not sure why.

I wish I could sleep.

Are we there yet?

Time has slowed to an agonizingly slow pace even as I am overwhelmed with how quickly everything is flying at me.

The wee hours of the morning are here, and again, I find myself typing instead of sleeping.

The heartburn, the random weeping, the lack of comfortable sleeping positions, the occasional sharp contraction. All normal pregnancy discomforts, all aiding and abetting the anxiety in keeping me awake.

I broke down recently, crying, to Lou. I missed Harper, I told him. It was both so hard and so easy to love her. What if I can't recapture that for this next baby?

I've begun to wonder a lot more about Harper's experiences in this world. Did she feel pain? Was she sad, scared, did she know when she was alone? Did we really make her happy, did we soothe her with our touch?

(Of course, she did, Lou reminded me. She wasn't shy about making it known when she didn't like something.)

Did it hurt, those last moments of dying? Did it help that we were there?

These are the thoughts that hit me when I least expect it, and leave me wide-eyed and thinking, deep into the night, when all I really crave is sleep.

Then there are the daily small minefields.

It happened again today - speaking before a group of Chinese women scientists about career issues and work life balance, I was barraged with kindly meant questions after the talk, "Is this your first?", "This is number 2?", "Another boy? Do you also want a daughter?"

Each question stung.

I answer these now reflexively, inwardly wincing because there's no good choice between answers that are not quite right and answers that are more than a casual interaction deserves.

It reminds me of the weeks after Harper was born and died when I would reflexively answer the question, "How are you?", which I discovered is asked dozens of times in the course of a normal day.

"Fine," I would say, "OK. Hanging in there."

Even when I was as far from fine as possible.

Maybe I should just print a card I could hand to people and walk away. It might say, "This is my third child - we have a four year old boy and a daughter we lost as a newborn. We would love to have a daughter but 1) have no desire for a third child, 2) are unwilling to go through the agony again of conceiving as carriers of a fatal genetic illness; and 3) are too busy being excited by our healthy and happy new baby boy on the way."

Sigh. I shouldn't gripe. The questioner always means well, it's not their fault they're causing unintentional pain.

And as impatient as I am to meet spawn, I'm not ready yet. Too much to do. Too many anniversaries lurking on the horizon.

While feeling the baby kick, a few days ago, Shea remarked, apropos of nothing, "I think baby Harper will be sad because she didn't get to meet the new baby."

Cue immediate tears in maternal eyes.

I stumbled on the answer. "I like to believe she'll still be with us in spirit," I told Shea, "We'll still remember her, she'll still be part of our family, even if she can't really meet the new baby in person."

Although I don't think he really understood what I was trying to say, Shea is looking forward to spring largely because he wants very badly to plant the seed-embedded paper heart sent to us by hospice in memory of Harper. "We need to plant Harper's seed," he tells me, at least once a week, fretting over whether the snow will melt and pondering where best to locate them. He is keeping her spirit alive in his own way.

That's my boy.

Good night, Harper bean. I'll be thinking of you on the day your brother is born and every day in between. Maybe that's spirit enough.

Fear

You want the truth?

I'm very scared.

It's not something I like to admit, even to myself, except in the deepest, darkest hours of the night. These are thoughts I lock away, in a tiny black box, at the back of my mind. Otherwise, I would go crazy.

Once your innocence is lost, it is gone forever. This should be an easy pregnancy. Everything is perfect. All indications are that spawn is completely healthy, right on track. If this was my 2nd pregnancy, right after my perfectly easy, textbook experience with Shea, I would be relaxed, unworried.

Instead I worry all the time.

When something is seen, it cannot be unseen. I've been introduced to the world of support groups, in which perinatal loss includes not only people like me, who have lost newborns, but also those who have suffered stillbirth or other third trimester loss. I have heard heartbreaking stories, so many, many stories, of little ones lost at birth or at 30+ weeks of pregnancy.

And the thing is, most of the time, they thought everything was fine, until it wasn't. One day the baby's fine, the next the movement stops.

So, I worry. I never feel like it's safe. I feel like I can't become complacent, lest I jinx myself.

Anecdotes aren't data. I know the odds are on my side. I've done this before, I have a beautiful little boy to prove that there is such a thing as an easy, stress-free pregnancy. Happy endings do happen. Heck, happy endings happen most of the time.

I don't want to rush anything. I want spawn to cook as long as possible. May 2nd sounds like a great day to be born, and that's what I want the plan to be.

But 6 weeks is suddenly feeling interminable.

"In the home stretch!", people say. "Almost there! It's coming up fast!"

All true, but the closer we get to the finish line, the more anxious I feel. I just want to curl up on my bed and gestate. Just lie there and focus on my baby boy kicking and growing until I can actually hold him.

I'm so frustrated, I feel like this should be getting easier, but it's getting harder. I'm distracted and manic and lethargic and overly sensitive, all at the same time.

So I force myself not to worry. I ignore the anxiety. It is too paralyzing, and I have no time for it. I put one foot in front of the other, I get through every day, I do what I need to do.

Still... it's what I think about when I wake up in the middle of the night.

I miss normal anxiety, the reasonable worry of "how do I do this?" or "will I be able to handle two kids?" or "do I have everything I need?"

For the first time, tonight, I read through the notes that people wrote for us after Harper's memorial service. I needed that. It made me cry. Quite a lot, actually. It is making me cry now. But it also reminded me that along with the fear and the changed world view and the anxiety and the sadness came a lot of love, a lot of positive emotions. A lot of lives touched.

Like, Shea, who is terribly sick today, reminded me that the worry doesn't end when they enter the world. It never really stops. All you can do is muddle your way through, do the best you can, and hope your love is enough.

Just 6 more weeks.

Happy 11 months, bean

The funny thing about having a blog is it allows you remember what was going on exactly a year ago.

I was living through an emotional rollercoaster, terribly worried about you, Harper. I was getting steroid injections, in anticipation of your early arrival, and switching to the high risk practice at Georgetown. I remember lying awake for hours at night, desperate to feel every little movement to help reassure me you were OK. Such a contrast to the nonstop kicking of spawn, which keeps me up at all hours in a completely different manner.

But even in those darkest hours, I don't think I ever really believed you wouldn't be here. Even at my most scared, I don't think I ever really believed you would die. Dying babies were not a part of my vocabulary then. If I did think of it, it was quickly dismissed as too worse a worse case scenario to happen.

But here it is, 11 months after you were born. And you're not here, because you did die. To this day, thinking that or typing that makes me flinch inside. I prefer hiding behind the softer euphemisms for death - we lost you, you passed.

Your father and I have begun talking about whether to have some sort of unveiling ceremony on your one year birthday. We will most likely be in the hospital, with spawn, on the one year anniversary of your death.

I strangely find myself jealous sometimes of those who have undergone stillbirth; they have only one date each month haunting their calendars.

(Lou and I recently sat down with a lawyer to talk about estate planning. In a rhetorical question, he said, "Most places a death certificate looks just like a birth certificate, do you know what the two differences are?" "Yes," I told him, "date and cause of death." I know this because of you, Harper - I was so struck with how nearly identical your birth certificate and death certificate looked.)

And my calendar does feel haunted right now. A bizarre mix of practical and emotional considerations.

April 18th, you would have been one, May 5th, the year anniversary of your death. In between? The birth of spawn on May 2nd, Shea's birthday on April 25th, your joint due date on April 26th.

Spawn's bris would be May 9th, and we've thought about shifting the celebration - bagels! lox! baby passing! - until the next day, Saturday, so we could celebrate with more friends. But May 10th is the one year anniversary of your memorial service, and I can't decide if holding a celebration that day would be fitting or dishonorable.

May 11th? Mother's Day. The day spent planting the azaleas from your memorial service in our yard. Azaleas that I'm afraid have not survived the winter.

I had a whole vision for this year - our 10th wedding anniversary, Lou's 40th birthday. We'd go on a big celebratory trip with Shea and with you, Harper, who would have been about the same age as Shea the first time we took him overseas.

Now we'll have a newborn.

Last week, I had my final ultrasound appointment. Spawn is still measuring perfectly. It's funny, bean, to think he weighs almost as much now, at 32+ weeks, as you did when you were born. He still has 3 or so pounds to gain. You never managed to do that.

Hello, spawn

But because of you, I feel like I know what he looks like. I remember what almost 5 pounds looks like, what it feels like. I can picture spawn because of you, Harper.

At this very hour, 11 months ago, I was figuratively climbing the walls of the recovery room, trying to figure out why I couldn't see my baby, waiting for news, any news, that you were OK.

It wasn't OK, of course. And here we are.

I wish I could clear my calendar of emotional landmines. I wish it was as easy as deleting an appointment in Outlook.

Will the pictures around the house be enough, bean? Will this blog be sufficient? Will your brothers grow up thinking of the sister who's not there as part of our family, or will you be too easy to shrug off, an artifact of their parent's distant path? Shea, at least, still remembers you, still talks about you, recognizes you in pictures. How long will that last? When there's another baby's pictures gracing our walls, will he be able to tell the difference? What will spawn think, through the years, of the sister he never met? Without whom he would not exist?

You will always be our second child, Harper bean. And, if nothing else, I will do my best to make sure we never forget you were, however briefly, a bittersweet beloved part of this family.

The road not taken

As the day of spawn's arrival approaches, I find myself thinking a lot about what life would be like if everything had gone according to plan. What if I'd just had a baby? A normal, healthy baby?

He or she would be close to a year old now. Would she already have taken first steps? Would we be planning a joint 4 year old and 1 year old birthday party? Would I be exhausted from running around after two kids instead of exhausted from running around after one while hugely pregnant? Would I be able to say we'd taken a family trip to Australia, or would that be a plan for the future?

Would we have already given away or sold the bassinet, the bouncer, the baby swing? Would all those tiny newborn clothes be on someone else's baby by now? What would be on those shelves in the guest room that currently serve as an alter to our Harper bean, filled with mementos and memories of her too short life? What would our family photo wall be like if Harper's picture wasn't nestled among those of Shea and Lou and I? If instead of a baby frozen in time, there were photos of a baby transforming during that first year of life? Pictures of Shea and a sibling, growing side by side?

How would I be different?

What would I be like if I hadn't had my soul ripped out and slowly recovered? If I hadn't truly experienced mourning and grief? If I remained oblivious to the friends and colleagues and strangers around me with similar experiences? If I hadn't learned to witness joy through the unflinching filter of pain? If I had never learned that sharing pain, and exposing every emotion, every moment of unending grief, could be the most freeing pathway of all? If the hours and hours I've spent crying were instead spent living or maybe taking for granted all of the blessing around me?

Would Shea still be the empathetic, sweet boy he's become, if he hadn't witnesses firsthand his mother losing a child?

Spawn is kicking me, as if to say, don't forget me. I am here, mommy, and I would not exist if not for Harper bean. If things had gone as planned, there would be no spawn to love and raise and sing to.

And that is no small thing.

No time for contemplation

Dear Harper bean,

There is no time for quiet contemplation on this, the 10 month anniversary of your death. Life is busy, almost crazily so, with commitments, professional and personal. I read the sad stories of other SLO parents struggling with their little ones and feel guilty as I realize that I could not be doing half of what I'm doing now had you lived. The sense of relief and feelings of grief are in constant battle in my soul, and I sometimes wish their was a guidebook to navigating this complicated path.

Your daddy and I went away for a weekend, without Shea, and were truly happy to spend some time together, relaxing. I felt like it was our first getaway alone since you were born, but I realized we'd had another, last June, for a wedding. Comparing the two made me realize how horribly, horrifically sad I was then. I remember having to escape from the wedding crowd, to run off crying alone behind some bushes, terrible, wrenching sobs. It wasn't relaxing, I was too pent up with nervous energy, with grief, with too many tears to count.

Your mama's come a long way, baby.

These new sparks of happiness have awoken in me a need to celebrate the spawn. It has begun to bug me that we had such lovely baby showers and a bris for Shea, and such an amazing memorial service for you, I want to celebrate the life of this new baby, too. We've begun to talk about a bris - likely to be on a workday, so a little complicated. Then I catch myself comparing your memorial service to a celebration for spawn, and it gives me pause, it confuses me. On one hand, I feel odd having an event for you, my child who didn't live, while not having an equally grand event for the spawn, our new healthy boy. On the other hand, as Lou put it, we'll have more than one opportunity to celebrate spawn's life, something we did not get with you.

That thought was enough to set the fear in, because if you've taught me nothing, bean, is that you can't take a fragile life for granted. It makes me want to celebrate every day in the life of Shea and spawn, because every day I get with them is worth ceremonializing.

This is the picture that hangs on the wall of our bedroom, Harper girl, and it reminds me every day how lucky I was to hold your hand, even for a short time. Between the chaotic moments of a busy life, I am thinking of you today, my love.

Magic fingers...

Shea has been very into counting lately; they've been working their way up to 100 in preschool.

As I prepared to clip his nails the other day, he stopped me and said, "Wait, Mommy, I have to count them first. One, two, three, four, five, six, seven, eight, nine, ten! Ten fingers!"

I complimented him on his counting and began to clip his nails.

"Everyone has ten fingers," he informed me.

I paused. "Harper bean didn't," I reminded him. "She had an extra finger, so she had eleven fingers."

He thought about that for a moment, "But did she have a pinky and a thumb?"

"She sort of had two pinkies," I told him. "That's where her extra finger was."

"When she growed up, would she have ten fingers?"

I brushed past the truth of Harper never growing up and instead said, "No. She was born with eleven fingers. That's just how many she had, so she would have had that many growing up. Some people just have extra fingers."

He thought some more as I finished clipping his nails. "Mommy," he told me, leaning closer, "I think Harper bean's extra finger was magic!!"

I thought about Harper's quirky little extra finger and smiled. Magic indeed.

Hormones + mourning = mess

I am a blubbering mess.

I've decided to blame pregnancy hormones. Because it's the only reasonable explanation for why I've been bursting into tears at the drop of the hat. I am a blubbering mess. With heartburn.

With the tears has come full blown nesting. Which has unintentionally led to more tears. In rearranging a corner of our bedroom to make way for a new chair (for baby nursing), I discovered an innocent looking bag lurking in the corner. A bag, it turns out, used to throw stuff in hastily, rather than putting it away.

From the time of Harper.

There were receiving blankets from the hospital. Extra pumping supplies. Hospital socks. And a letter.

A letter to Shea. Written, by me, for his third birthday. This is my tradition: letters to my son on his birthday, and sometimes in between, so one day he can read and know what he was like growing up. How much his mother loved him.

This letter was written the night before Harper was born.

I specifically remember writing it. Purposefully writing it before the baby was born, because I wanted to capture that last moment of his being an only child. I had come home early from the TEDMED conference, skipped the party, so I could have those last hours with only Shea, and I wrote that letter late at night, after tucking him in.

I was a blubbering mess then, too.

The letter is mostly a love letter to Shea. But I do mention that I'm worried the new baby might have serious health issues, and that I'm worried how that might affect him, our family.

With everything that happened in the weeks after, I guess I never tucked it into his baby book.

It's hard to read now, because I can barely imagine that time, worried, but not knowing what was to come. Having no idea that I was writing to my son about a sibling who would no longer exist three weeks after that letter was written.

As Shea's fourth birthday approaches, I've been thinking of that annual letter again. As impossible as it is to capture in words everything he means to me and every way in which he's evolved this past year, it is more impossible still to express how much in particular he meant to me this year, this year when so very much has changed. How much he has kept me alive through the sadness, how kind and sweet and empathetic he has been, even though he doesn't fully understand why I'm mourning, what makes me cry. He is still there with a hug, with a smile, with an offer to help me feel better.

And I feel nervous, writing to him at the dawn on another baby's birth, worried I might jinx it all again.

The tears fall.

Other things that have brought me to tears in the past 48 hours? A note, unearthed from who knows where, that appeared on our dining room floor, which was once attached to a bouquet of flowers sent for Harper's memorial. A small miscommunication with Lou over when to meet up this afternoon. The happy thought of feeling my new son on my chest for the first time, and the joy and relief that will bring after all the fear of Harper's birth. Not being able to open a can with a slightly bent can opener. Estate planning, because it's the grown up thing to do, but no longer with the naive belief that bad things don't happen to good people. Frustration at the yard work needing to be done. Watching Shea fumble in his attempts to invite friends to play at the playground or the ice rink, and the sudden worry that time and society will change my kind, sweet boy into something less guilelessly friendly, less innocent.

The overwhelming urge to protect my children from anything and everything that might hurt them. Even after having been made painfully, horrifically aware that sometimes that's impossible to do. Knowing that no matter how much you do, children get hurt, children can suffer, children can die.

It makes me want to run upstairs and hug Shea and never let him go. But I resist, because he's had a busy weekend, a happy weekend, and needs his sleep.

And so I cry. Typing this, I am angrily wiping away tears, because I'm sick of this irrational crying.

I feel like I can't possible sleep until I purge these stupid tears. The combination of out of whack hormones and mourning is a powerful and unpleasant combination.

Ugh.