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.

Almost ten months

Dear Harper bean,

It is almost time to celebrate (to mourn?) another month's birthday that you'll miss. Double digits. Ten months since the day you were born.

I had some quiet time today, and it is during those quiet times that my thoughts often turn to you. Not that there aren't still noisier, more obvious reminders. A former colleague asking how the baby was doing. Shea asking whether we would plant "Harper's heart" in the spring - a paper heart filled with seeds sent by hospice. Thoughts about avoiding May 5th, the date of your death, when scheduling my c-section.

But it is during the quiet times that I think of YOU. As your new brother cheerfully kicks and wiggles, I remember those long, worried hours, lying on my side, begging you to make those faint reassuring movements. The days spent combing the internet, reassuring myself it would all be OK, talking to you, reassuring you it would be OK, too. The painful uphill journey of falling in love with you and the painful end-of-the-world feeling of letting you go.

There are still days when I wonder how life could possibly have moved on.

Sometimes I slip, and I think of the new baby as "bean". Such a natural name for a little one growing inside of you. But that's not something I want to take away from you, Harper bean. So much a part of your identify, in my memories.

I don't even know what I miss any more. You. Or the idea of you. All I know is that I still cry when I think about you. A lot of things still make me sad. A lot of emotions still feel out of control. Maybe it'll always be that way.

Ten months. We're coming up on the time period in which you've been gone longer than I knew you. Pregnancy plus two and a half weeks of life. Yet there are still days I can't believe it all happened.

Oh, Harper bean, as time goes on, I'm finding it harder and harder to sort through the jumble of feelings thinking about you triggers. Time is softening the edges, not always blunting the pain, but blurring the focus. So I have to squint to feel clearly.

But I can still remember what it felt like to hold you. I think I will always remember that.

9 months and still counting

I wonder if the question, "How many kids do you have?" will get better or worse after the spawn is born?

I was faced with that very question recently, when I ran into a former co-worker in the grocery store, someone I once worked with on a daily basis but hadn't seen in a couple of years. "I notice you're expecting," she said, "what number is this for you?"

I totally blew it. Stumbled. Stammered. Finally blurted out, "I have a three and a half year old son, Shea." She probably wondered what sort of idiot didn't know how many kids she has. Maybe she chalked it up to pregnancy brain.

"I just don't being it up," Lou noted. "I don't feel like people have to know, like I have to explain it to them."

True for me, too, more or less, more and more over time. I don't raise Harper's loss with strangers or acquaintances. It's not a topic I raise unsolicited. I'm able to answer most of the inevitable pregnancy-related questions without batting an eyelash.

But it is the people I know well, or used to know well, who somehow are just not in the loop of bad news that throw me for a different sort of loop. When is it too much catching up? It feels dishonest to me either way: either I'm forcing it by inserting the "oh, by the way, 2013 was the worst year of my life because my daughter died unexpectedly" into a casual conversation; or I'm ignoring a major, life-altering event in speaking with someone who I know or knew well. Thus the stammer. And the obsessive re-analysis of the conversation.

Ironically, I spent the anniversary of Harper's death back on Georgetown's campus, teaching my class. At about the same time Lou and I were desperately driving to Georgetown in response to the doctor's call, I was driving away, to return home. Today reminded me of the power of keeping busy. It was a tremendously busy day, culminating with a three hour class, and I had very little time to feel sad, even as the date was the first thought on my mind when I awoke.

My only break for a few tears occurred, oddly enough, through a viral Facebook gimmick, which automatically generated a movie of your history on FB. My two most popular posts? "Two pregnancies. Exact same due date. Why yes, I DO have a Ph.D. in reproduction!" and "thanks to Montgomery County hospice, we're going to bringing our little Harper home on Monday!" That last one hit especially hard. I am still sad that we never had the chance to bring our baby home, although I wonder if that would leave my house haunted by ghostly memories?

Another grieving mother, who recently lost her beautiful baby girl, posted on the SLOS board about her daughter's death, ending with the plaintive question, "What do you do when you lose a child?"

I hate that I can answer that question.

Death in the age of the internet

Being part of a rare disease community in the age of the internet is a very strange thing. It allows you to connect with others you would probably never have a chance of meeting in the real world, to share pain and challenges, joys and sorrows. It makes you feel not so alone.

Unfortunately, with a disease as potentially serious as SLO, it also means an unending stream of notices of babies dying. In the past couple of months, it seems like there's been such an announcement every few days. 

My heart aches for each and every one of those families. Their stories bring back so many memories: the fearful pregnancy; the hopeful birth; the devastating diagnosis; the flood of information; the emotional tsunami; and the unimaginable loss. I feel incredibly sad to think about someone else going through all of it for the first time. Sometimes I think about disconnecting myself from the community; to avoid having to relive the heartache again and again and again.

But I can't do it. Those who walked this path before me were there to catch me when I was falling. And I want to be there to let the next mom or dad know that they're not alone.

Losing a child initiates you into this hidden club of mourning parents. People at all stages of grief. Some who suffer every minute of every day, and some who have gone on to the next joyful experience. You learn about miscarriages and stillbirth and SIDS and pediatric cancer. You think about whether it would be better or worse to lose a baby before you've had a chance to hold her, or to lose a child whose personality you've already gotten to know.

They're all bad. They're all unimaginable. Until they're you. 

Last night, Shea crept into my bed in the wee hours. Lou was traveling and Shea finally succumbed to the cold that has been plaguing our household, awakened by a hacking cough. I listened to his wheezing breath as it grew calmer and calmer, and we were lulled together into sleep.

But it was silence and panic that awoke me, as I suddenly thought, "wait, is his breathing too quiet?" and reached out a hand to reassure myself he was just fine. Still alive. Still breathing.

I think every parent has those moments. Especially when your little ones are new. Or very sick. I had them when we first brought Shea home, long before Harper ever existed. Long before I entered the club of mourning parents.

But the feeling is different when you know it's not entirely paranoia. When you learn, firsthand, that niggling symptoms aren't always just dismissable. That dying babies and lost children don't just happen to other people, people you read about in the news or in novels or see in movies. It happened to you.

More than the struggle not to give in to sadness every day is the struggle not to give in to fear. To enjoy every moment with Shea and with spawn and not let my thoughts turn to whether that time will be limited by events outside my control. To not worry that because a bad thing happened before, it could happen again.

Every news story of a baby born and dying of SLO makes it that much harder. Even though I know neither Shea nor spawn have anything to fear from that disease, it is hard to ignore that these stories are a microcosm of all the things you never dream could hurt your child until they do. And I don't want to think about that. I want my kids to experience everything their world has to offer, all the love I can give them, without thought to the dangers that might lurk around every corner. The coldly, calculating scientist in me doesn't want to allow my emotional mommy-ness outweigh the statistical odds of very bad things happening. Because really, the odds are on our side.

So I push those thoughts aside. Because it's the only way I know how to survive.

I like the idea of those SLO angels, like Harper, and the other kids lost too young, gathering together for a never ending playdate somewhere. A much happier vision to focus on. 

Me and spawn

Dear Spawn,

You're keeping me up, kid.

Just you and me, in the wee hours of the morning. From what I recall of Shea's early days, it won't be the last time I say that in the next few months.

I'm not going to lie, it's been a rough few days. Out of nowhere, a tiny sniffle turned into a cold of monumental proportions, making it difficult for me to even get out of bed. Yesterday your daddy succumbed. I envy him his ability to take drugs to relieve the symptoms - you and I have limited ability to do that. While we stumble about, feeling barely alive, you and your brother are happy, healthy, and exhausting.

When I was finally able to fall into bed tonight, your Cirque du Soleil audition began. If I hadn't seen the ultrasound myself, I would swear there had to be more than one of you in there.

Taken with the sniffling, coughing, sneezing, aching, not breathing, and listening to your dad do all the same, this whole beating mommy from the inside out business makes sleep very hard.

But I did sleep, eventually.

And I dreamed of Harper.

I don't very often, you know. Dream of her. At least, not that I remember. I did a lot in the beginning, lots of nightmares, mostly. Perhaps it's because so much of my conscious mind is sometimes occupied by her and my feelings about her, that my unconscious mind doesn't bother. Nothing left to process.

My dream tonight started out completely unrelated. Lou and I had been invited to some engagement dinner of a famous chef. Oddly enough, after dinner, we began to divide into softball teams. Even more oddly, Ryan Zimmerman was there, complete with uniform. We made small talk, he asked about our family.

In the dream, I began to tell him about Harper.

And it opened a floodgate of memories. I don't even know when I crossed the line between asleep and awake. But I was reliving her memorial service. The sunshine. The speeches. The readings. Holding Shea in my lap, him clutching my skirt as I stood to speak. It was suddenly very important I remember what Lou and I said. I think it was reaching for that memory that pushed me into fully being awake.

You were still wriggling, kicking, jumping. I lay there with my hand on my belly. And I remembered. And I worried.

My OB appointment a couple of days ago went perfectly. Other than me being sick as a dog, that is, and wanting nothing more than to go home and back to bed. But the word "perfect" was thrown around a lot: perfect heartbeat, perfect fundal height, perfect weight gain, perfect blood pressure. Then I went to schedule my next appointment and realized we've hit the "every two week" appointment mark. The third trimester. We get to meet you soon, spawn. I felt panic, I'm not ready...

Mind leap back to the dream.... Ryan Zimmerman brought about another sense of deja vu. Last year's season ticket draft with our Nats partners, joking over brunch about carting two kids to baseball games. Thinking about how we'll be doing it all over again, nearly the same amount pregnant, wondering if they know about Harper, or if I'm going to have to answer the same questions over again, see the same looks of sympathy and pain.

Remembering those first baseball games after, surrounded by Harper shirts. Realizing I can't nurse in my Harper bean shirt, so I probably won't be wearing it this season.

Suddenly wondering if I'd make our President's meeting at work, which is late this year, or if you'll already be with us, spawn.

Flash to a memory of Lou and I in Georgetown, a week or so after Harper was born. We saw a therapist for the first time, cried a lot. It was a beautiful day, and after days of being shut in the hospital, decided to take a walk. I was suddenly filled with determination to reach a high-end baby store on M Street to buy you a present. A present specifically for you, baby clothes you could call your own, price be damned. But I was only a few days past my c-section, and couldn't walk very fast. We reached the store, and it had just closed.

I thought, if I can make it to the President's meeting, I can get there and get you a present, spawn. Make up for failing to do that for Harper bean.

The one year anniversary of her birth, her death is coming up, and I wonder how I will handle it. I'll need to schedule my c-section date fairly soon, and I think about all the days we now need to avoid at the end of April and beginning of May.

And all this time, through all those thoughts and memories, you merrily kick away, little spawn.

I love you, you know. That's the real reason I gave up on sleep and came downstairs to write to you. To tell you that. Every miserable moment of stuffed up nose and burning throat (current state), every sense of deja vu and worry (constant state), every night you keep me up with your frantic antics - it's all worth it, baby boy.

I can't wait to hold you and your brother together in my lap. I can't wait to watch you grow into a sturdy little boy, like he has. I can't wait until these pre-dawn chats are over nursing, instead of crying and memories.

I can't wait until this stupid cold goes away.

Hush now, little spawn. It's time for both of us to go to sleep.

One last memory, kissing Harper's forehead, breathing in her baby scent, always tainted with the smell of rubber tubing and adhesive and hospital. Feeling the weight of her, light as it was, fall squeakily asleep in my arms.

Good night to you, too, bean.

Messy on the doorstep of 9 months

I made it to the parking garage before I totally lost it. After having come close to bursting into tears on the metro, I felt pretty proud of keeping it together until I was in the privacy of my own car. A small consolation.

Why then, why today? Maybe it's because of Harper's nine month birthday tomorrow. Maybe it's because this week has been marked by endless travel and my grandmother's funeral. Maybe it's because I got a lovely note from hospice or because Shea told me that if we had medicine for Harper we could give it to her and she wouldn't die. Maybe it's thinking about other babies and feeling the dueling emotions of not having more and worrying about the one to come.

Maybe it's all of these things. Or nothing at all.

Grief is like Tigger, waiting to pounce you when you last expect it. One day is fine, the next is hours of hiding tears at the office,  keeping tissues nearby,  the stress of hoping you won't make a total fool of yourself for crying at nothing whatsoever. Feeling completely helpless in getting caught up in the wave of sadness. And anger that there is nothing I can do to combat this feeling. It's frustrating and makes me angry. Or it would, if I weren't already feeling overwhelmed with sad.

With Shea, nine months felt like a milestone. Outside my body as long as he was inside. I remember the flannel moose pajamas he wore at nine months and the constant pulling up on the furniture,  fooling us into thinking he would be an early walker.

Not having those memories with Harper, knowing we'll never have them, pains me.

Sometimes I just feel like a complete mess. Today is one of those days. All I want is a quiet space to cry, to find my center again, to feel like myself. Alas, it is not to be. Life goes on, obligations must be met, tears must be kept in check.

Someone recently told me that whenever he sees bean plants or seeds, he thinks of Harper, and the bean seeds we gave out at her memorial. I love that. It is, oddly enough, those happy associations, rare that they may be, that offer me the most comfort on the mess days.

I never thought I'd be speaking at my daughter and my grandmother's funerals within the space of a year. I wish I could find some deeper meaning in that, express an elegant sentiment about the full circle of life. But I am too adrift, too fluttery with tears to think about it much.

It is what it is.

Hours before dawn

It just past 4 AM, and my house is filled with sounds of my family sleeping.

Except for spawn. He is awake and wriggling. A good preview, perhaps, of the days to come, when it will be just he and I, up together, in the haze of sleeplessness that is a newborn.

I was awakened by Shea, but now find myself too crowded with thoughts to go easily back to sleep. In a few hours, I need to catch a flight, which is never a time for easy sleep, in any event. As tired as I am, I'm almost glad Shea woke me up, giving me one last chance to cuddle my boy in his soft airplane PJ's before I leave him for several days.

My grandmother died today, my last remaining grandparent. This is sad, but not tragic, as she'd been sick for a long time, and passed very peacefully at 92 after a life well lived.

"I'm kind of sick of death," I told Lou, in between coughs, because in addition to everything else going on, I've manged to catch his cold.

And that's the truth. This week has felt like a nonstop parade of dying. There have been what seems like an avalanche of recent SLOS babies born who have either died or are in serious condition, and hearing about them, seeing their pictures, brings me back each time to those days with Harper.

It puts me on edge, makes me distracted, catches me off guard with moments of sadness.

And I'm not sure I'm ready to attend another funeral. It reminds me that Harper's ashes are still on the shelf. So are London's, for that matter. I'm still not ready to deal with either.

But I will go to my grandmother's funeral, because she would have wanted me there. Because she loved nothing better than having the family together to hug, to scold, to laugh with, to cook for, to tease, and to bask in the attention of the generations she'd worked hard to raise.

All of the talk of death has brought me back to thinking a lot about heaven. I recently saw a preview for a new movie "Heaven is for Real" about an alleged real life story of a boy who had a near death experience and was able to describe heaven on his arrival. I watched the preview and wondered if I could stand to watch such a movie?

I don't really believe in heaven, or an afterlife of any sort. But I like the concept. I still like the idea of Harper's spirit living on. Of my grandmother having the opportunity to meet her latest great-grandchild. "Hello, dolly," she's probably say, "Come here and see your grandmother." Thinking about that makes me smile, makes me cry.

Mostly, though, talk of death now serves to make me tired. ("Everything makes you tired, right now," Lou points out. "Maybe you should only tell me when you're not tired, and we'll just assume you're otherwise exhausted.")

I am weary of summoning up the energy to mourn. I am ready for the sunshine of the springtime, for walks with my new son, for a sense of renewal. I am ready to feel awake again.