Into the Wilderness: Parenting a Terminally Ill Child

by Emily Rapp, guest contributor

Acubaby Ronan

"You feel your obligation to a child when you have seen it and held it. Any human face is a claim on you, because you can’t help but understand the singularity of it, the courage and loneliness of it. But this is truest of the face of an infant. I consider that to be one kind of vision, as mystical as any." ~from Gilead by Marilynne Robinson

I woke up and held my son for a long, long time. I’d been gone for three days at the National Tay-Sachs and Allied Disorders Family Conference and had missed him terribly. Driving through Boston on the way to the airport, I told my friend Kate that it was so difficult, so impossible even, so disastrous to imagine feeling that way forever. The missing, the ache.

We agreed that, say what you will about heaven or where we go or visions of the afterlife, the truth about someone being dead is that they’re gone from this life, right now, here on earth, with you. That particular person has been removed from your particular life. That’s the gut punch and there is no balm for that, no platitude, no prayer, and, I would argue, no belief even that will fix it. My son will be dead within three years and there’s nothing I can do about it.

After a brief scare with the lack of a ticket at Logan, a very nice woman ended up fixing the problem for exactly $967.00 less than she was supposed to.

I was waiting at the gate when a woman began crying hysterically, screaming, saying You can’t do this to me again. You’re ruining my life. Oh my God I can’t believe this. I literally thought somebody had died.

As it turned out, the woman had been told she needed to check her luggage as the overhead bins were full, and the last time she flew somewhere the airline had ruined her laptop. I had zero sympathy for her and boarded the plane in a teary huff. When I saw her sit in the row in front of me, still squawling, still hysterical, I thought about offering her a Xanax or perhaps handing her the weekend program schedule from the Tay-Sachs Family Conference: symptom management, secrection control, choosing an end of life plan, memorials, support group for grieving parents.

The man sitting next to me pointed at the back of her seat and said, “FREAK.” I nodded. The man sitting next to her asked if she was okay, handed her a tissue, and then the real story came out. For years this woman had been homeless, jobless, and her computer, her laptop, the one thing that had allowed her some freedom, some ability to look for jobs, had been ruined when she flew home for a family funeral with money a friend had given her as a gift.

The man next to me kept laughing, but I did not. I was no longer in the mood for his jeers or my complicity in them moments before. I thought about what people will say about Ronan at the later stages, some of the names they might call him, they way I myself have used “retarded” in the past; the way people regard difference. And I thought, no, she’s not a freak, she’s someone’s child, and beyond that she’s a person.

Four hours later and the air on the jetway was like heavy cake. Texas. The Dallas airport, a place that is clearly trying to be a Texas version of Heathrow, same font used for the signs, same glossy stores lining the terminals, arrows directing you to the “toilets” instead of the restrooms. Through the windows of the above ground skylink train whisking between terminals, the lights of the city dripped in the thick sky. I sat near the front of the train as if it were a carnival ride, and I thought about all the sick kids I met in Boston. I held a lot of tiny hands.

I was getting irritated with the loud group of retirees sitting next to me at the coffee shop when one of the men stood up and said, “Okay, well it’s chemo day for me, so I’ll see you later!” and strolled away. We know so little about people’s lives, about what they go through. At least at the family conference where we huddle together and try to figure out how to manage and eventually eliminate all these terrible, insane diseases, everything is out in the open — all the misery, gallows humor, joy, fear, dread. As one mother said, “People talk about living each day as if it were your last, but that’s a completely exhausting way to live.” Indeed it is.

Sometimes I sit with Ronan and think, “How can I make this moment more precious since he is only here for such a short time?” And then I remember another Mom telling me that her best memories are about just sitting on the couch with her son — no additional meaning needed to be sought or found.

Taking a break from the conference to have a drink at the swanky Blu bar at the overpriced, complete-with-soothing-waterfall Sports Club L.A., I kept thinking about the daughter of my mentor at the conference. Two and a half and gorgeous. I thought about her when I was not at the conference, at night before falling asleep, and I had dreams about her that I can’t remember. Probably because she is the closest to Ronan in age, and because her mother and I share a similar philosophy-of-care approach. But it wasn’t just that. It was some quality in her face, in her person, that indicated how totally and completely and unabashedly and proudly she was loved.

Acubaby Ronan and Mama Emily Rapp

In the T, walking to the conference, having dinner, I kept having visions of her face and Ronan’s, these two particular faces. And then I kept thinking that this particular group pf parents might be the best in the world. No, nobody is going to say "Wow, you did a great job with her; you must be so proud,"’ after she graduates from Harvard and becomes the leading radiologist in the world. Nobody is going to say "You raised him right." or "You raised him wrong." There will be no “raising.” There will be no “proof” of what was done for these children, no pats on the back from society or community or friends. These parents will never make the mistake of living through their children. Listening to them discuss the minutiae of their children’s care, you can’t help thinking that each one should write a book about how to be a parent, truly, in the ways that matter the most.

There are many horrible things about living with a terminally ill child, but the hardest is the way in which our parenting approach approximates an old archetypal story — without the redemptive ending. When your child is dying and there is no treatment or cure, it feels as though you are sending them out in the wilderness, only there is no returning from the exile. Nobody is passed over. Nobody is freed. The faces of those children and their parents are brave and beautiful because they are singular faces. The parents know their children’s bodies like no other parents; they learn to read the subtlest cues and find moments, even in the later stages of the disease, when elements of the child’s personality shine through. And I know their stories now, their desperately human stories. They are sad, sometimes unbearably so, but also, in some moments, absolutely laugh-out-loud funny. What these parents do is as sacred as it is misunderstood.

There is something profound and liberating about naming the unspeakable, giving it voice, letting it live in a room. I can sit in a group discussion and talk about “growing into a diagnosis” and about pulmonary care and how some studies have shown that when people can no longer eat, when their bodies shut down, there occurs an incredible physical euphoria that is the opposite of pain or discomfort. And then someone might tell a joke. And then someone will tell their story about the final days with their child, and the importance of hospice care and night nursing. Sitting in circles, loving their kids, suctioning lungs or feeding or rocking or comforting, all of those people were children once, and now they’re fierce parents. They were or are somebody’s child. Their own children, dying though they might be, have a claim on them. And all of them have a claim on me.

This is it: although having a terminally ill child has, in many ways, ruined my life because Ronan will die. Talking with these parents helps me strategize about how I will possibly manage his death, which will be forever for his father Rick and for me, and these parents are teaching me about practical considerations (doctors, care options, alternative treatments) as well as all the impractical considerations (how to be strong and hopeful in the face of hopelessness). More than anything else, each face in that circle, infant or adult or otherwise, is teaching me how learning how to live with death is also about learning how to live.

Emily RappEmily Rapp is the author of Poster Child: A Memoir and an Assistant Professor of Creative Writing and Literature at the Santa Fe University of Art and Design. Her work has appeared in The Los Angeles Times, Salon, The Sun, and many other publications.

Photos by Jennifer Weber.

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  3. invisibleforeigner said: That was heartbreaking and lovely. Thank you.
  4. Emily Rapp submitted this to beingblog