going on living after a child has died

I started writing this essay last year, around the time Heather and Mike Spohr lost their precious Maddie and Shana of Gorilla Buns lost her four-month-old baby Thalon to SIDS (Thank you to those of you who reminded me of her blog’s name.) I sent it to a few publications, all of whom rejected it (“too dark”), so I put it away for a while, then pulled it back out when my neighbor, a woman in her 50s, shared with me that her 13-month-old baby had choked to death in her care thirty years ago. Today, in the wake of Katie Granju’s loss of her oldest son Henry,  I’ve pulled it out, done a bit of pruning, and am publishing it here. My heart goes out to all mothers who have lost children. As much as I’ve attempted to put myself in your shoes, I admit it is a place I’m not able to go to for long.

My mother gave birth to five children, but only four survived: her third child, Patrick, who would have been my older brother and the middle in our lineup, died in infancy of SIDS (then known as crib death). Bits and pieces of Patrick’s story came out throughout my childhood and early adulthood, via wine-soaked confessionals from my mother.  He’d been a difficult birth; forceps were employed, and my mother had never felt he was quite “right”, she shared (considering my tender age, one might say she over-shared). As I got older, more bits of the story came out. She’d felt guilty because she had never really had a chance to enjoy him; she had three children ages four and under when he was born, and she was exhausted all the time.

The night before he died was a hot evening, she told me, and, as per the common wisdom at the time, Patrick was a bit overdressed for the weather. She’d taken him for a walk and when he’d fallen asleep in his pram, she decided to let him stay there for the night. (This being the early 70s, he was probably also sleeping on his belly with a few stuffed animals cushioning his face as my parents blew smoke rings in the living room).

Early in the morning, my mother told me, she heard a voice from somewhere in her subconscious say, “The baby’s died. It will be okay.” She slept a while longer, only to wake and find the unthinkable: the voice, wherever it came from, was right. The baby had died. And though it’s hard to imagine anything for my mother being “okay” again, she did live, she did go on to have two more children, she did laugh and dance at weddings and enjoyed the rest of her family and managed to have a full life in which she didn’t burst into tears every five minutes. Most days, anyway.

Since discovering mom blogs almost a decade ago, I’ve read countless online journals written by parents of sick, dying, or deceased children. Reading eulogies, looking at pictures of children as their conditions deteriorated, holding my breath through surgeries and efforts at treatment, I’ve cried over the unfairness of it all, felt cut deeply by grief for the bereaved parents. But it’s always felt like a safe kind of sorrow. I’d never felt like I could BE one of those parents…until a scare knocked me out of my delusion of having invincible children.

During my fifth pregnancy, my husband and I joked that we were really pushing the odds. After all, “getting away with” four uncomplicated births and healthy children was unlikely enough, we said: going at it a fifth time was like betting on the Cubs. When Clara, our first daughter, was born in March 2009 without complications, it appeared we’d had another round of good luck.

But when Clara was just over a day old, I noticed her lips looked darker than usual. And then as I watched, a dusky purple color crept up over her face and head. Rubbing her seemed to snap her out of it. Until she did it again.

In the space of a half-hour, Clara turned blue two more times. We called the pediatrician, the paramedics, (who came and found her looking pink and healthy) and finally, headed to the ER, where she turned an impressive shade of purple in front of the admitting doctor and sent the staff into a tizzy of activity.

As I sat helplessly on a chair watching nurses give her oxygen, a doctor was brought in from the pediatric floor to assess the situation. “Unfortunately, my best guess would be congenital heart disease,” she said over her shoulder.

My husband turned ashen, and I felt the world stop.

I imagined surgeries, a transplant list, a search for donors. A pale, weak child growing up in the hospital. Suddenly I realized that I could, in fact, be one of those parents with the blog about the sick baby. I could even be one of the ones whose story ends tragically. It really could happen to me.

Our NICU story turned out to be much happier than many.  Soon after we arrived at the transport hospital, a neonatologist gave us some reassuring news:  Clara’s blue spells were not caused by heart disease, but likely a minor seizure caused by a small amount of bleeding in her temporal lobe—treatable with medication, unlikely to happen again. Her hospital stay was uneventful; she had no more episodes, the medication they gave her appeared to work, and we went home ten days later with a healthy, hearty baby we all adore.

But since we came home from the hospital, I have found myself fixating on the potential deaths of my children in a way I never did before. I imagine all sorts of horrible accidents and diseases waiting to claim them, but one thing I can’t imagine is how I would possibly go on if the unthinkable happened. I can’t imagine going on to write lovely blog posts about my deceased child, take pleasure in the antics of my other kids, walk to raise money for research or start my own foundation. Frankly, I can’t even imagine getting out of bed again.

My mother died when I was 22, a mother myself, but still ruled by a sense of invincibility that extended to my children.  It wasn’t until years later that I realized that, for all the times I’d heard about Patrick, I’d never asked my mom what it was like to find her baby dead (probably because I didn’t want to actually think about that part of the story). Did she notice instantly, or just think that he was sleeping soundly? Did she try to revive him, or understand right away that it was too late? Did she feel panic, dread, fear, revulsion? How did the moments unfold as they waited for the ambulance to arrive? And later, when she returned home from the hospital to an empty crib, when she made the horrible but necessary phone calls, when she buried his small body—how did she stay upright?

I may never have the answers to those questions, but as a mother of five who suddenly feels the weight of helplessness in the face of her children’s mortality, I want to know. I want to know what it’s like to see your child dead and yet to continue living. I want to know that should the unthinkable happen to me, I could also survive, instead of spontaneously combusting, or becoming instantly insane, or simply ceasing to exist, which are the only three possibilities I can imagine for myself in such a scenario.

If my mother were still alive, I would ask her: How? How do you go on? Because two of my children are getting so big, and so independent, and I can’t be with them all the time. And two of my children are so full of small-boy energy, so trusting of themselves and the word, that they’re constantly doing dumb and dangerous things. And one of them is still so small, still so delicate and young, and who knows what’s going on in that body of hers. And put all together, there are too many of them, too many for me to protect all on my own all the rest of my life. Please tell me how you live with the first-hand knowledge that sometimes children die…without dying yourself.

But really, what would it matter? If my mother was here, maybe she’d say, “You can’t.” Maybe she would tell me that part of her died and never came back to life. Maybe she’d tell me that any moment of happiness she appeared to experience was a sham; that her heart was always with her baby; that any slights her other children may have felt during childhood were because she was thinking not of them, those lucky children still on earth, but of the one who didn’t make it. Maybe she’d tell me that the nasty divorce and the vodka bottle in the underwear drawer and the desperate attempts to find religion and the alcoholic ranting was all, all because of what happened that day.

What then?

It’s too late, in any case. My children are here; I’ve allowed myself to love them wholly and without reserve. They are as familiar to me as my own skin. It’s likely I’ve got several decades left on this earth; our family will grow exponentially, and car accidents, diseases and other tragedies will always lurk in the wings, threatening to claim one of us.

There is no way to make peace with that awful reality. But in the meantime, there is nothing I can do but love them, love them, love them, as if tomorrow would always come.

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