Grief is Like an Internal Terrorist

I have been reading almost nonstop since the week after Lizzy’s funeral, alternating between books on grief, loss, and newborn and infant care. Books about Lizzy, books about Cecilia–back and forth. I just finished a book on grief by a woman named Marie Levine called First You Die about living after the death of your child. In this book, she has a line which particularly spoke to me: “Grief is like an internal terrorist.”

During the two years that Lizzy was alive, she and I slept together every night. Now, every night I sleep beside fear. Fear that sometimes borders on terror. Fear that sometimes pretends to be quiet and then pounces in the middle of the night. Fear that manifests in nightmares. Fear that is unabating. Fear that is relentless. Fear that pretends to be solace and then reveals itself in horrific triumph. The fear does not leave me. And although I now sleep beside Cecilia instead of Lizzy, fear for Cecilia is nearly as constant a bedfellow as fear of life without Lizzy.

My reading on grief has led me to conclude that no way in which you lose a child, no age at which that child is, is preferable or “better” in any way. For Marie Levine, the loss of her only son when he was 22 also resulted in a loss of grandparenthood and a loss of someone to leave anything to or to care for you in your old age. I had another child within a month of losing Lizzy and am still young enough to have more children. Losing your only child or losing all of your children when you are too old to have more is a special kind of pain. I don’t believe it is less or more pain than mine; it is just different.

I lost a very young child to disease. Lizzy’s death certificate says “MRSA pneumonia” under cause of death. She died from a disease that cannot be vaccinated against and that is very rare and very lethal in young children. More than this, MRSA is found on the skin of more than half of the human population. More than this, I had every family member tested for MRSA, and none of us have it.

In my experience, this type of death has resulted in unending fear that sometimes becomes out-and-out terror and an unrelenting guilt. There are endless “what-if’s” that daily pass through my mind: would she have survived if I had taken her into the emergency room sooner? If she had had earlier access to antibiotics and oxygen? If the helicopter had taken us straight to Children’s Hospital rather than the PICU at the second hospital? Would the ECMO machine (the life support machine) have saved her body if we hadn’t gone to the second hospital? Would the cardiac arrests that caused the brain damage still have happened?

And the what-ifs go deeper. Would she have survived if I hadn’t taken her to wherever she picked up the MRSA in the first place? If we hadn’t had other little kids who had been sick or would become sick in the next week at her birthday party? If we hadn’t taken her to the wildlife sanctuary and let her feed the farm animals only days before she got sick? If I had taken her to her 2-year visit at her pediatrician on time, would the pediatrician have been able to diagnose anything that early? And if I hadn’t had to stop breastfeeding her because of my pregnancy, would I have been able to pass on more immunities to her or prevent the disease from spreading as quickly as it did? Did she pick up the MRSA at Costco or at the chiropractor the day before I took her to the hospital?

Most importantly, would earlier medical intervention have been able to save Lizzy’s life or would she have died no matter what?

Every single question has no answer. And I have spun in these questions and concocted more and more elaborate scenarios of the final days before her death and what could have been done differently to prevent this outcome. There are endless scenarios, and not one of them can bring Lizzy back. Just like over 100 medical professionals, 2 priests, the sacrament of Anointing of the Sick, and the prayers of literally hundreds of friends, family, and acquaintances could not save her life.

I grew up in privileged, upper middle-class America, and this life did not prepare me to encounter or accept the death of my toddler. Throughout 30 years of living, I never knew or met anyone who lost a child under the age of 18. Because of this, I lived in a pretend dream-reality where children in this country don’t die, where the stories you hear always happen to “other people” or people on the news, but not to people that you know. Child death seemed to be something that happened in impoverished countries, in war-torn areas, not in my country–and certainly, not to me.

But the reality is that child death does happen in this country. It does happen to people that you know. And it can happen to you. This is evidenced by the fact that for four mornings in a row–weekday mornings–we were directed to overflow parking at Children’s Hospital because the hospital’s parking garage was so perpetually overcrowded. How many other families were watching a suffering child fade or recover during those five days my heart was being carved from my chest? How many other mothers were slowly dying with me, watching their children die despite all of this modern medicine?

I think part of our problem is that we don’t talk about it. Socially, we are uncomfortable speaking about death, and we certainly don’t bring up the death of our children in casual conversation. But this doesn’t mean that they aren’t there, that they aren’t dying, and that their parents aren’t silently suffering a grief that feels fatal even though it’s not.

In the weeks following Lizzy’s death, I would walk around with my fingers to my wrist, feeling my pulse, and not understanding how my heart could still be working and Lizzy’s heart just stopped working. And now, when I hold or kiss Cecilia, I can feel her pulse, and I live in absolute terror of the utter fragility of her three-and-a-half-week-old heart.

In the weeks following Lizzy’s death, I was told by professionals that as parents, we have no guarantees that our children will survive. That life itself carries with it a constant risk of death. And that if I’m looking for comfort, I should play the numbers game with myself… “Well, most children survive.”

But there are some cultures living today in which a full half of their children will not survive to adulthood. In our country, the advancements of modern medical intervention have lulled us into a safety stupor where we think we are immune because we live near some of the best hospitals in the world.

But there are no guarantees, and nowhere is safe. Death can touch us anywhere, at any time, and apparently, we are just supposed to live side-by-side with that terror and that trauma. “Living,” I’m told, is the practice of surrendering to that terror and of not allowing it to consume us.

But it has consumed me. It has consumed me so totally that I am afraid it is just a part of how my brain works now. The “what-ifs” ring though my head like daily sirens. I see the potential of death at every turn; I play out scenarios of falling down the stairs, getting hit by cars, suffocation, food poisoning, appendicitis, and SIDS. But most of all, I fear disease. The prospect of having to raise Cecilia through adulthood and facing the countless illnesses that will inevitably crop up along the way fills me with a terror that is borderline paralyzing.

I do not know how to reconcile that my body at 32 years old is so much stronger than hers–that adults generally are so much more resilient. Lizzy was so beautifully healthy, so strong, so brilliant, so precocious. And then her heart, her lungs, her kidney, and her brain all failed, one after another, collapsing like dominoes. And now I do not know how all parents do not live in absolute fear of just trying to keep their children alive until adulthood. It seems an impossible task, and disease seems an insidious and voracious predator, invisible until it’s too late.

I didn’t get to be one of those miracle stories about which you say “Thank God…” or “We caught it just in time.” No, my daughter is dead. And I have nearly constant fear that my other daughter will not survive until adulthood.

Then, of course, I remember Marie Levine, who successfully parented her son through adulthood, only to have him killed instantly in a car accident. And then I know that there is no end line, no safety net, no point at which I can rest and believe Cecilia is safe. Death is everywhere. It doesn’t sleep, and it approaches without warning.

So I don’t care how many people tell me I can’t live the rest of my life in fear. There is no argument you can make to me to convince me otherwise. This world is terrifying. Disease is terrifying. Death is everywhere. Terror does not seem to me to be an inhibitor to life. On the contrary, it’s a product of seeing life for what it is: about to end.