Accepting My Child's Life-Limiting Illness Is an Act of Love

November 9, 2016.

Disoriented doesn’t even begin to describe it. You’re on another planet. The terrestrial norms that have kept you grounded for 32 years are meaningless, annihilated by forces beyond your control. Your characteristic practicality and diligence are no match for the septic, strange world in which you now find yourself — a world in which children are born with life-limiting illnesses, and their new parents must cope with grit they don’t yet know they have. A world in which your 5-pound son, who was due today but arrived almost three weeks early, sits swallowed in a Seattle Children’s Hospital bed with clanging metal sides that remind you of a prison. Impossible numbers of doctors, nurses, residents, interns, medical assistants, fellows, social workers and other strangers have spent the past five days puzzling over why the lactate levels on his newborn blood screening were so staggeringly high.

You didn’t know then what you know now — that lactate is a biochemical byproduct, not the same as lactose from milk. You (ridiculously, hopefully, repeatedly) ask the nutritionist if maybe your son just has an allergy to your breast milk? And maybe we’ll just make some modifications to his diet and this will all go away? Of course, they probably don’t do emergency room spinal taps to test for food allergies, or twice daily blood draws for days on end, leeching from your son’s scalp once they’ve exhausted all other veins. Food allergies probably don’t show up on heart and brain ultrasounds. Or resolve through aggressive rounds of intravenous medications to supplement critical chemical deficiencies. But you don’t know this.

You do know you are still bleeding from giving birth. You know you haven’t slept for more than three hours at a time since he’s been born. You know if you weren’t so tired and heartbroken, you might have screamed at the lactation consultant who suggested you go hand express your milk in the shower. The one who, when you told her you were too sad to shower, unhelpfully said, “…but the tears help the milk flow.” You don’t want your tears to make your milk flow. You want to be back home, in your son’s gray and white nursery, feeding him at his insistence and marveling at his tiny tundra of copper colored hair. You want someone, anyone, to tell you that you will survive whatever this is.

You’re too terrified to ask if he will.

October 21, 2017.

You have your (non)answer. Your son turns 1 today, delightful in his green dinosaur shirt, surrounded by adoring family. They, like you, understand the uniqueness of this boy’s tender and resilient spirit. You know, given the opacity of his prognosis, that this
may be the only birthday he gets. Or the first of just a few. Or maybe, just maybe, one of many. Mitochondrial disease often kills children. And it sometimes doesn’t.

Your son’s list of secondary symptoms from this genetic metabolic disorder has spiraled over the year. When he was 6 months old, you learned how to do daily injections to treat his seizures. The thin, shiny needle felt like a butcher knife in your shaking hands. When he was 8 months old, you learned the cells in his stormy blue eyes had atrophied, and that he was functionally blind. Your son cannot see your face. At almost 9 months old, he received a feeding tube to supplement his nutrition, since his body cannot sustain energy for eating. Global physical and intellectual delays put him at the developmental level of a 4-month-old. He cannot hold his own head up, let alone crawl, walk or run into your arms. Your son may never call you mama. The lists of milestones the state sends you every three months feels like a cruel bureaucratic joke. Your son is, after all, registered with the state’s division of developmental disabilities. Why can’t your tax dollars pay for someone to ensure these never find their way into the hands of grieving parents?

Of course, it’s not all upsetting mail and doctor visits. There are trips to large family reunions in Utah, Oregon and California where your son is welcomed, celebrated and prayed over in a way that makes you believe in eternal families again. There are walks through Japanese gardens, where you describe every shade and shape of azalea and rhododendron you encounter. You put his feet in the chilly Pacific Ocean. You pick clematis and hold it to his nose during walks through your bustling Ballard neighborhood. You read him, “A Children’s Garden of Verses,” by Robert Louis Stevenson and plead with God and Gaia that his hearing remains intact, so
he can at least find comfort in your voice. You are simultaneously gutted and elated by every reality of his existence.

Cortisol and adrenaline have been your fuel for a year, and as a result, your wanting tends to wander. Some days, all you need to feel whole is your son in your arms, a cup of instant coffee and a double chocolate donut from the shop on the corner. Other days, your fear of the future is so debilitating you simply want to fall asleep, floating in a sensory deprivation tank, for hours, days, weeks. Sleep for you remains as sporadic as it was when he was a newborn, given a round-the-clock medication schedule. So, you do what all striving parents must do: calibrate, then recalibrate, what it will take to maintain your mental health. Amid this universal balancing act, you begin to find your footing. You feel almost “normal” — like you might just be able to make your son’s time on this earth wonderful.

May 13, 2018.

Mother’s Day. Moving day. Against all odds, you have successfully purchased a new home in one of the most competitive real estate markets in the country. A home that has already been adapted for wheelchair accessibility. A home with a westward facing backyard where you and your son sit to feel the sunset and say goodnight to the nesting birds in the trees along the fence line. A home where you can faintly hear the horn of the ferry and the blast of the train along the port of the Puget Sound. You feel immensely fortunate to have landed in a place where he can grow along his own trajectory. Over the past several months, you have read everything you can find on inborn errors of metabolism, parenting children with disabilities, human evolution and genetic variation. You learn the latter is essential. Valuable. Inevitable. Your son is essential. Valuable. Inevitable.

You find comfort in the words of the poet W.S. Merwin, “…from what we cannot hold, the stars are made.” You will hold your son as long and as lovingly as you can. If you must, you will let him go.

You yearn to do it well.