This is what I know. I know that yesterday—January 3—two girls with the same syndrome as Fiona died. I know that they were quite young—one about the same age as Fiona. I know that the other was a bit older, and was abandoned at birth by her biological parents, and that a kind woman volunteered to become the child’s caregiver, and I know this because the woman told me at the national conference for 4p- (deletions on the short arm of the fourth chromosome). She wanted to learn as much as she could about her daughter’s condition, so she traveled across many states.
I know that the other child died of complications following a seizure. Just one day prior, on January 2, my daughter had a seven-minute febrile seizure. It’s the third time I made the cold walk in the dark from the house to the ambulance. I’ve taken the trip enough times that I now know the EMT people don’t always do things the same way, that they sometimes ask mom and child to lie on the gurney together, and they sometimes strap the child onto the gurney and ask mom to sit beside her, and they sometimes, like two days ago, just let mom hold the child in a seat. I know that ambulance rides are bumpy and that you have to hold on. I know that during the ride, they will give the child oxygen, and I know that the clear plastic mask I hold over my daughter’s little face is a comfort to me because it will be something I can do for her. Here, child: oxygen.
I know that roughly 90% of kids with Wolf-Hirschhorn Syndrome suffer seizures of some kind.
I know that other children with WHS have died. I know this from doctors and internet articles, and I know this because when I first googled the syndrome, the search engine guessed what I might want to know—Wolf-Hirschhorn Syndrome life expectancy? (For the record, Google, I did not want to know.) But I also know about deaths because at the national conference we paid tribute to all those who had died of complications from WHS. Someone read the names aloud, and for each name we released a butterfly into the hot July air, and I know that the names were many, and that they were so many that I almost went numb from the list, so I let myself get distracted by the butterflies landing on shirts or hovering above heads, instead of feeling whatever I might have felt if I had let the names sink in.
I know that none of us can really count on permanence, on having tomorrow what we have today. I know that my favorite spiritual teacher, Pema Chodron, is right. That any ground of security we build underneath us is an illusion—the ground of a so-called secure job, the ground of good health, the ground of a well-mortgaged home. The job can get cut, the house can get demolished, the health can vanish with one accident, or one routine test. I know this.
But I also know that some lives look far more secure than others. Some ground looks firmer to stand on. Some people seem to get to feel that they’re standing on cement for decades before they must realize otherwise.
Case in point: mixed in with a dozen or more Facebook posts today from mourning parents—parents with WHS kids, parents who know “it could be me” next time and who feel in their chests the deep ache for our community’s loss—there are also a dozen or more other posts from other kinds of parents. Parents with typical kids. Parents who do not make monthly trips to a children’s hospital and who do not spend hours a week with their kids in various kinds of therapies and who do not know the intricacies of g-tubes and jg-tubes and the appropriate calcium levels in urine. Their kids get fevers and don’t seize. Their kids have kidneys that don’t need constant testing. Their kids sit up at 6 months and walk at one year and talk right along cue, and they will not be diapered into adulthood. Their kids will reach adulthood.
Or rather, odds are very, very good that their kids will reach adulthood. So good that it’s perfectly normal and justified for parents of typical kids to expect it. To envision it. To believe their kids will outlive them and will even offer a eulogy at their parents’ funerals.
But if I look unflinchingly into the reality of my daughter’s life, I absolutely cannot expect this. I can hope my child will live into middle age, but yesterday’s events are a keen reminder that I’m floating in uncertainty. That every day with Fiona is not a promise but a gift.
I know the answer to the general groundlessness of life is not despair—not panic—not paranoia. I know that the wise gurus and contemplative mystics I read say it’s surrender. And release. And awe. Surrender to the unknown. Release in the uncertain. Stand in awe amidst the mystery. Which sounds like: you’re hanging in the blackness of space, and your mouth just goes agape at the swirling galaxies. I know that there’s supposed to be something deeply spiritual and potentially transformative in this practice of letting go. That it can put you in touch with God or your Buddha Nature or whatever great big All-Is-One enlightenment language that feels right for you.
But knowing this does not make it easier. Here is one final thing that I know: I know—and am especially reminded from our community’s loss—that parenting a child with Wolf Hirschhorn Syndrome requires a fierce and disturbing degree of courage. Last night, I wept for the parents and the kids, and I wept for this courage, because I wish I could turn it in. I wish it wasn’t required of me.
Here is what I don’t know: I don’t know why some of us must live so closely to the knowledge of life’s groundlessness, and others get to live otherwise.
I don’t know, for instance, why some people have children with Tay-Sachs Disease, which usually results in death by age four, and other people have children who outlive them. (For really good writing about parenting a child with Tay-Sachs, read Emily Rapp’s work.)
I don’t know why some people have not just one but two kids with special needs, and not genetically-inherited special needs but fluke occurrences that will still make those children dependent on their parents forever.
I don’t know why some people can’t have any children at all, and some can produce nineteen.
Or rather, I know, medically, why these things happen. But cosmically, I don’t know why.
You can probably add your own difficult situations to the list, either friends’ situations or relatives or maybe even your own, situations that appear much tougher than the ones you perceived in a good many Christmas card photos this season. Maybe you sometimes ask why too.
Shunryu Suzuki Roshi, Soto Zen teacher credited for bringing Zen to America, found that the hardest thing about teaching Americans was their repeated questions of Why. It wasn’t a question he met with regularity it Japan. Apparently it’s a cultural phenomenon. We want to know why. Why. Why. Why.
And we come up with different answers. But none of them seem right to me. Of course, there’s that old-school belief that disability is a sign of a parent’s sin. That if a person gave birth to a child with disabilities, that person must have done something displeasing to God. Thankfully most people don’t subscribe to that belief anymore. (Although I sometimes wonder if The Secret/Law of Attraction movement—the movement that says you can control your reality by attracting what you want into your life—is just setting us up for a New Age version.)
I know that there are other explanations. Special kids go to special parents. Everything happens for a reason. You were given this to learn a life-lesson. I’ve never been satisfied by these answers.
Here is perhaps the only answer that has satisfied me. Thomas Keating, a Christian Contemplative monk as well as my husband’s friend and spiritual teacher, says that if God has an answer to the Why question, it’s this:
None of your business.
I laughed when my husband first told me this. It seemed the best answer I could find to life’s mysteries. And sometimes when I remember it, it stops my mind from spinning answers to the Why questions, answers that in all truth just feel like further attempts to build a false ground I can never really stand on.
I don’t know why Fiona has Wolf-Hirschhorn Syndrome. I don’t know why two of her peers died yesterday. I don’t know why others have lived. In the great cosmic order of the universe, I would like to know why, and I don’t know why, and it’s not much consolation, but maybe it’s just none of my business.