The One Thing I Do Not Know

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.

Fi at 3 weeks, staring into the mystery.

Fi at 3 weeks, staring into the mystery.


14 thoughts on “The One Thing I Do Not Know

  1. I really loved reading what your wrote. I cried for these families, and pray for them. I try not to think of the Why? and just enjoy the now. I know nothing in life is permanent, and will live everyday to the fullest. Every day we get to spend with Jake is a blessing. My husband and I do have alot of anxiety when Jake has a seizure, because he can seize up to 2 hours straight. It is terrifying, and very hard. Much love to you!!

  2. This is an amazing post! My husband and I both are trying to incorporate more Zen- Buddhist philosophy into our daily lives. In fact, the first charm on my Pandora charm bracelet that Mark gave me to mark Kaylee’s milestones is the Buddha– to help remind me to stay in the present and live in the moment…for in the present moment, everything is okay. I also wish I had the answers– especially as one of the parents you described who was given 2 daughters with non-inherited disorders that severely compromise their futures– medically, socially, and of course, physically. I need to become more grounded in the mindset you mention– that of your husband’s friend Thomas– and stop seeking the answers. It might help me better cope with the day-to-day emotional challenges that seem to follow me like our new puppy. Thank you for putting these thoughts– thoughts I often have– into such beautiful words!

    • Laurie, Heather and Justin some years ago gave me a set of tapes, which I am sure are now in CD, of “The Contemplative Journey” by Thomas Keating. The contact information for a catalog was : Sounds True, POB 8010, Boulder, CO 80306-8010 (800)333-9185. I pray this may help you on your journey. This may all be outdated at tis point, but perhaps a start to get more info.

  3. Thank you for writing this, for your courage and effort in putting these words to paper. When our kids die, I feel without words. Thank you, thank you.

  4. Hang in there. Sometimes it’s all you can do. Out in the silence are a bunch of other people who want nothing more than for you and Fiona to be OK. We’re out here, praying and hoping.

  5. I ran across this post via a friend on Facebook, and I felt every ounce of the pain you expressed. I was born with severe Spina Bifida. My parents were told that if I survived, I would never walk.

    The doctors were wrong in my case. I did survive, and I do walk, but as I’ve aged, I’ve slowly lost that ability more and more until I’m in a wheelchair almost all the time now. I’m grateful for the gift of being able to walk, and I consider every day that I’ve been able to walk a blessing instead of being angry and shaking my fist at the sky that I can’t walk as well anymore. But my parents… I know they have a harder time accepting it.

    They’ve sat and stood vigil at my bedside after somewhere around twenty surgeries, sometimes praying desperately that God wouldn’t take me yet. I’ve had a lot of close calls because there are almost always complications, but somehow, I make it through. They pushed me hard when I was young to be independent and suffocated me with fear when I made it to fifteen and got a learner’s permit.

    I have kidney problems, a bladder made out of part of my colon because my original one had no connection to my spinal cord, a colostomy, asthma, severe osteoarthritis, irritable bowel syndrome, Psoriasis, type II Diabetes, and will never be able to carry or give birth to a child. I’ve experienced my share of “suffering.” The Diabetes is a recent diagnosis, and by far the scariest.

    There’s a lot to be upset about and there are way too many whys to ask, but in my heart, I don’t need an answer as to why I’m this way. For me, the answer is simple: I am as I was meant to be. I was not meant to be any other way than how I am, and had I been born with a different body, I wouldn’t be the person I am. Our experiences shape us dramatically.

    Granted, our experiences have been way outside of the norm, but my family kind of embraces that. My parents know I want to be cremated, and while I haven’t signed an official DNR (mostly because I don’t want to upset my parents), they know I wouldn’t want to be kept alive on life support should something go wrong during a surgery . I used to tease my mom about wanting to be buried in a t-shirt I wore constantly that she hated. It’s always been an unconscious reality that my parents could outlive me, and has therefore never been considered odd for me to discuss my final wishes. My family knows I’m not afraid to die because I’ve stared Death in the face too many times to fear it anymore. I always tell my mom I’ll see her when I wake up before I’m whisked away into the OR, and I always ask God to let me wake up as I’m anesthetized.

    Living the life that I have has made me incurably optimistic, and I believe that we should always try to use our experiences to help others. It’s helped give me a sense of purpose and added a strange type of meaning to my existence. Maybe I just need to feel like I’m not some weird cosmic mistake. Maybe I need to believe that my presence on the planet is more help than hindrance to the human race. But regardless of rhyme or reason, adding something positive to someone else’s world always makes me feel better about my own problems, and makes me feel as if I’ve balanced out a little bit of the negativity I’ve brought to my parents’ lives.

    On a lighter note, I just turned 29… and my boyfriend and I are looking at engagement rings. My parents worried that I would never find someone who could cope with all the challenges I come with, but Christopher is my soulmate. He was made just for me. I have a high school diploma, a bachelor’s degree in Psychology, and am currently pursuing a Master’s of Social Work. I drive, I travel, have an active social life, and let very little keep me from enjoying the time I have here.

    However, now that I’m all grown up, my family has a new bedside to sit and stand vigil at and and a new little one we pray desperately God will not take “too soon.” My little cousin, Olivia, will turn 5 on the 10th, and she has Cystic Fibrosis. Now my parents pray that she’ll grow up.

    Not only do I know what it’s like to be the one with the illness, I know what it’s like to watch someone you love so dearly suffer. It’s incredibly hard for me to talk about Olivia’s illness. Knowing that she’ll experience so much pain and discomfort and so many challenges breaks my heart, but I also know that she will be strong. She will be brave. And she will always be considered a gift to this family no matter how long we have with her.

    At the risk of sounding trite, you are incredibly strong. I admire you so much because having been through what I have, and knowing what it’s like to watch Olivia deal with her illness, it takes a lot of strength to just keep on keeping on. I wish you a moment of comfort for every moment of fear, a smile to balance out every tear, and enough joy to outweigh your grief.

    Try not to worry about when she’ll be gone, and just try to love her while she’s here. Don’t spend the time you have already feeling her loss. My parents treated me as “normally” as possible. I had a lot of problems, but I was still a kid. I laughed, I cried, I was stubborn, I was funny, and I was cuter than should really be legal. 😉 In realizing that, they allowed me to be a person rather than a disease — defined by my personality rather than my physicality. That’s a gift we should all give each other.

    Thank you for sharing your experience. I hope it helps others as much as it helped me.

  6. It is a complex life that we live. It’s ill divided and sometimes bad things happen to good people, perhaps we will never understand why? They say ignorance is bless , but I think your better knowing . But we can’t let the worry of tomorrow overshadow today , cause time is too precious . It’s a wait n see as no-one knows what tomorrow will bring . Cherish every day with our little ones, because no amount of kisses and cuddles will ever be enough. I lost my beautiful angel Sophie Ava Rose in August of this year aged 4 , we were truly blessed to have her in our lives.

  7. I am one of those blessed patents who has 2 typical ( as typical as any child is) children.. But one of my close friends was blessed with a daughter with WH… I envy her strength and yours… What I know is that your beautiful words bring a sigh of understanding from other WH parents.. Thank you for enlightening me with a little more insight…

  8. You covered all of the thoughts of other 4P- parents and those of parents like myself that have two special needs children. Live with them in the now and stop worrying about the future is easy to say, tough to do, but the best advice for our families.

  9. I have a 21 year old daughter with WHS. I have come to accept this and the challenges and blessings which come as a result. I don’t ask why anymore; but I relish the strength and insights I have developed as a result. As I watch others cope with challenges life inevitably presents to them, I am thankful for my life and how I have grown as a result of what my daughter has brought.

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