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.

"Unprepared for gain"

I read Emily Rapp's book about losing her son to Tay-Sachs in the midst of my own grief over Harper. Which I think was excellent timing, because not only was I able to relate to her feelings of loss and anguish, but her beautiful prose expressed those emotions far better than I ever could, and I took comfort in the language of a fellow grieving mother.

She's written a new essay: Proof of Loss continuing the story of her son Ronan's death and it's aftermath.

In some ways, I again see myself reflected in the mirror of her loss. "For days after his death, I imagined the crematory fire, and I wondered what happened to his tongue, his eyes, his toenails. These thoughts made me wretch. I wanted to crawl into pictures and hold him. Where was he?"

These are words I understand entirely. I have lived them. Some days, I live them still. She captures the minute detail of Ronan's death, how he looked, how his breath sounded and smelled. I have those memories, too, and though, as she notes, there are no pictures or proof of what those final moments were like, they are the indelible memories. The last to slip away, the hardest to forget.

Emily Rapp, like me is pregnant. And struggling with the juxtaposition of expecting a new child while still mourning one who had died. "Is this your first child? No, I had a son and he died. This is the new crappy conversational exchange that is always brutal and brief." "Nobody is prepared for loss, which is necessarily linked to the passage of time. I believe we're equally unprepared for gain as well.... I'm scared, excited elated, totally untrusting and yet also feeling saturated by, incredulous with luck. Luck, by the way, being a concept that I do not believe in. And yet here it is, blinking in the dark, saying, "Hey, look at you, lucky girl, pay attention!"

I, too, find myself constantly reminding myself how lucky we are. How fortunate to have the opportunity to experience another child, with all of the resultant joys, fears, hopes, frustrations, and everyday experiences, good or bad. The vacillation between the "why me?" anger I sometimes still feel when I think about the soul ripping pain of the past year and the "I'm so grateful this baby's healthy" reminders I get when he kicks or I read the stories of others who are not so lucky in the genetic carrier community.

But Rapp's story carries another piece, woven within, that I cannot relate to. The loss of her son led to the loss of her marriage. That's not uncommon with the death of a child. Lou and I talked about that phenomenon, and the fear of it, shortly after Harper was born.

While I can't relate to Emily Rapp's experience, it serves as a good reminder to me about something else I am lucky in and grateful for: a wonderful husband.

Marriage is hard. Cliche but true. Marriage with two working parents of a young child(ren) seems practically impossible on some days. In the blur of exhaustion fueled never ending to-do list that is your life, it is easy to snap at the worst of times and ignore at the best of times. There is no one easier to take out your anger and frustration with all life has to offer - from the major unfairness of a child's loss to the everyday irritation that three year olds can bring - than the person standing next to you.

In the midst of all of the pain and horror and confusion that Harper's diagnosis and death brought, I did remember to tell Lou how much I loved him. How grateful I was for our marriage. We expressed constant amazement about how sync we were during that time, how supportive we were of one another, how we were passing the test of marriage with flying colors.

We've returned to the new normal and back to the stresses of the real world and the forgetting to be grateful. Lucky for me, I've got a blog, and a husband who reads it. A husband who I snap at and get impatient with (for good reason, on occasion!) and probably taken for granted too often and neglected because it was easy to do so. But for whom I remain grateful and in love with and attracted to.

I am very happy for Emily Rapp, who has found a new partner, with who she is deeply in love. And I am happy for me, too, for hanging on to a partner in life, in love, in adventure, and in parenthood.

The eighth month

On a bitter cold day, I was swept up in a fit of nesting.

I unpacked baby clothes. Again. I found some tiny pink girls things given as gifts to Harper. I paused, I set them aside. I ignored the sense of deja vu.

Then, I began a baby book for the spawn.

I was doing OK until I got to the page asking about brothers and sisters. I stopped, and thought a lot about how to answer. "I should definitely put down Harper, right?", I brought Lou into the decision. He paused, too, for a moment, before answering, "Yes, of course." How to answer the question about a sibling's age? Ultimately, I decided to stick with birthdates and, in Harper's case, her date of death.

But I almost wrote down her birthday wrong.

Forgetting is sometimes my greatest fear.

Last night, another baby unexpectedly born with SLO died. Not surprisingly, I've been thinking a lot about it, trying to remember what it was like to be in that place, that point in time.

Ridiculous as it sounds, in some ways everything was easier when the emotions were intense and raw. It was so much easier to express exactly how I felt, even as it changed from moment to moment, heartbeat to heartbeat.

Sometimes not being sad is harder than being sad.

So, I go back and read. And try to remember, I look for clues on how I survived. What I was thinking. What I was feeling. I hope the pain will keep me from forgetting.

But this other baby, this son of a stranger, has brought up an additional wave of complex thoughts and emotions, His parents fought so hard for him. They refused to accept he might die, they wanted to explore every avenue to save him. You could tell every ounce of their energy and prayers was dedicated towards willing their beautiful baby boy to live.

That was never me. And it's making me feel like a terrible, monstrous person.

I loved Harper. I miss her and think about her almost every day. But I didn't fight for her to live. I didn't refuse to believe there was nothing I could do to make her better. I fought for her to be loved, to not suffer. I accepted she had no chance to survive, and I found peace in that acceptance. But was it the right thing to do? Should I have fought harder, or at least wanted to fight harder, for my baby girl?

At the time, we struggled mightily with the question about whether the decisions we were making were right for Harper or right for us. This other baby's story has raised the specter of those questions for me. Reading and remembering, I still come to all the same answers, all the same decisions. I don't think we could have changed Harper's fate. I'm glad our time with her was spent loving her, holding her, that we minimized invasive procedures that clearly hurt her. But it is hard not to compare her story with others. And measure ourselves accordingly.

Parenthood, in my experience, is a never ending oscillation between taking everything one moment at a time and questioning whether you're doing the best, feeling like there's more to be done. Always overlaid and underlaid with the pure joy of the children you've created. There's a lifetime of guilt to deal with related to my living children. I probably need to let go of the doubts related to Harper, since there's absolutely nothing I can do to change the past. Easy to say, complicated to tease out the intricate threads of feelings and snip them one by one.

Exactly eight months ago tomorrow, we held our baby girl for her final heartbeat. In that moment, I would gladly have done anything in my power to save her. Maybe that's enough.

Losing control (a.k.a - the damn towel rack!)

In the weeks after Harper died, I got a lot done.

It was control freakery at its finest. I was manic, I was sleepless, I was determined to escape from the pain, I was going to impose order in a world out of control if it killed me.

My closets were incredibly clean. My projects were done. And it soothed me. My whole world was falling apart, but at least I could look around and think, well, there's this.

I could do that because I was on a break from my previously ordinary life. No one expected me to be anywhere. There were no demands on my time, except those I imposed on myself. I had the space to mourn and be as absolutely obsessive convulsively crazy as I wanted to be.

I threw things away. I straightened. I donated. I organized. I exercised. I had contractors stop over and give estimates for projects we hadn't even decided to do. I was on a first name basis with the staff at the county dump, where I dropped off a load of detritus at least once a day. I remembered to water my garden.

Even as the emotional typhoon raged within, my external environment was where I wanted it to be. I couldn't fix Harper, I couldn't bring her back, I couldn't make myself feel better - less sad, less angry, less hopeless - but I could have the neatest basement playroom east of the Mississippi.

But that was then, and this is now.

Pregnancy, the holidays, news of other SLO babies, the never shortening to-do list - the cacophony of anxiety inducing things is getting louder. And suddenly all I can think about is the list of house projects that need to be done. The workouts I should be tackling. The normal mess that inhabits any house occupied by a three year old feels like it's closing in. My to do list has taken on the weight of the ten commandment tablets.

And I long for that false sense of control I felt over my house, my sanctuary, after Harper's death. The safe place I created for myself to mourn.

Except I can't recreate it.

My time is no longer disconnected from the world around me. I've returned to real life. I have a son and husband who need me. Pets to care for. A job to focus on. A social life to enjoy. An upcoming baby to plan for.

My body is no longer driven by the manic energy that drove me out of bed and frantically moving from one project to the next. I am exhausted, and I just can't do it.

Even if I could, there are better things to devote my energy to. My family. My job. My friends. My spawn.

But I want to. I want that sense of control back. And the fact that I can't have it is driving me nuts. So I don't sleep, I can't sit still. And I'm more exhausted. It is, as they say, a vicious cycle.

I try to distract myself with enjoyable, relaxing things. Fun with Shea. Events with friends. Movies. Books. Cooking.

The end result? Mild self-flagellation for doing those things when I should have been working on [fill in the blank project here].

One of the projects on the list seems symbolic of the way I feel right now. The damn towel rack in our powder room keeps falling off the wall. No matter how many times I re-install it, it just keeps falling off. And every time I walk into the room and see it down, I want to scream. I just cannot fix it, and it refuses to fix itself. Just when I think I've solved the problem, it re-emerges.

Is it urgent? No. Do any of our infrequent guests care about the state of our towel rack? Probably not. Should this be high on my priority list? Nope. Is it worth losing sleep over? Absolutely not.

And yet.

And yet, it is one small thing among many that I clearly have no control over.

I have no control over how the spawn is doing either. Or the random jags of emotions I feel about Harper. I'm not stupid, and I've spent lots of time talking to therapists and grief experts in the past year. That's what this is really about, of course, just a manifestation of what I can and can't control in the world around me. I can logically and rationally understand that.

But that doesn't really make the stress any less real.

This too shall pass. It will all get done. Or it won't, and that'll be OK, too. For now, I find myself wishing that house elves really existed. Or that Mary Poppins magic where she snaps her fingers and things fall into place. Or that I could manage to sleep through an entire night. Or make the days long enough to get more done.

And, meantime, I ordered a new towel rack.