The One Thing I Still Mourn: Notes on a Five-Year Anniversary

When Fiona was three and a half months old, my husband and I received a phone call. I was in the living room, zipping up a suitcase for our first flight with a baby, counting the short hour or two before our plane would take off, getting nervous about traffic. Justin was in the home office, so he answered the ring. Who was it? I paused and eavesdropped.

His response was not, “We’re not interested.” His response was not, “I’m sorry, that person doesn’t live here.” Instead, he mostly listened, and when he talked, his voice was serious and smooth. Measured. I walked away from the half-zipped luggage and headed toward the office.

I knew what this meant. Our baby’s chromosomal study, which a pediatrician had ordered weeks ago, had come back. And the results were not a quick sigh of relief. Our child had something.

Of course she did. She was three months old and only seven pounds something. She had a heart murmur. Feeding her required a Herculean effort the likes of which no mother had prepared me for. And when I looked into her wide-set eyes, I saw the face of someone who breathed with an answer I didn’t yet have, for a question I didn’t want to ask.

My husband now had that answer too.

Justin went back and forth with a nurse on the phone. “What about the heart murmur?” He wrote down a note. “So we should just keep an eye out for blue lips?” He paused. “Is it okay to fly with her?” He paused and listened.

I widened my eyes. Was it okay to fly with her!?

He nodded at me.

After a few minutes, he got off the phone and told me the news: our kid had a deletion on the short arm of the fourth chromosome. I sat down in a chair. I cried immediately.

Something in me broke with that news—because what I’d heard immediately was that my baby, my first child, my gargantuan love in a seven-pound package, was broken. That was not true, but that was what I heard, and it sent me straight into a chair where I cried immediately.

(And something else in me broke in that moment, an ineffable thing that never mended, but that’s okay, because some things have to be shattered so you can step into something more beautiful.)

Justin looked at his brief notes on a small yellow notepad and shared what he’d learned: this chromosomal thing could lead to small growth, and it explained the heart anomalies.

“But it’s the short arm?”

“Yeah, the short arm. Of the fourth chromosome.”

My brain was starting to deal out logic like playing cards. The short arm. That sounded trivial. Who needed all of their short arm?

“And they said we could fly with her?”

“Yeah,” Justin said. “We just need to watch for blue lips. The nurse was most concerned about the heart murmur. She wasn’t even concerned about the chromosome.”

More playing cards: Okay, so chromosomes don’t matter. Blue lips on a plane. Sure thing, we can watch for that. We can be very astute to the lip tints of our three-month-old.

Then we finished zipping up bags and we drove in a car to an airport and we flew an hour to the east coast, where Justin’s parents picked us up because we were attending a funeral the next day. Justin’s uncle had died. We were gathering to mourn with family.

It was dark by then, and in the car, we told our daughter’s grandparents that we’d gotten a diagnosis. We said this diagnosis explained Fiona’s small size. We said it might pose other health concerns. We said we’d say more later when we knew. We didn’t say what it was.

Justin’s father said, “As long as she has ten fingers and ten toes.”

I think we’ve just entered a world, I thought, in which we shouldn’t privilege perfect hands, perfect feet. I thought we should probably start cultivating okay-ness with nine fingers, eleven toes, with the body in whatever way it is.

Here’s what we didn’t know: We didn’t know her chance of walking would be fifty percent. We didn’t know her chance of ever speaking would be even less. We didn’t know her chance of epilepsy was 93%. We didn’t know her odds of dying before the age of two were one out of three. We didn’t know that every person living with Wolf-Hirschhorn syndrome has some degree of intellectual disabilities, from the moderate to the profound, and that parents of kids with Wolf-Hirschhorn syndrome need to think about the long-term care of their children.

We knew she was small and that she might get blue lips. We leapt and we flew.


Black & White Photo: At the center is a bald man in his eighties, seated in a leather chair, sporting a white goatee, black T-shirt, and blue jeans. That’s Justin’s grandfather. He’s holding a bald baby, who looks upward and sticks her tongue out. To his right is a smiling middle-age woman in glasses, Justin’s mom, and slightly in front of him, at either side, is Justin and me. We’re both smiling. My finger is touching the tiny, socked toe of baby Fiona.

Facebook tells me this picture was taken five years ago. It’s a photo of our family on this weekend trip to the east coast. Justin’s grandfather sits in a chair holding baby Fiona, and Justin’s mother stands behind him smiling. Justin and I squat in front, also smiling.

The picture marks the passage of time. Justin’s grandfather, looking vibrant and full-faced, is no longer alive. My own face is now marked with permanent laugh lines and an eleven between my eyebrows. Justin’s hair, totally brown in the photo, is now graying. And Fiona… here, her great grandfather is supporting her entire body. She’s cradled. Her eyes look upward. It will be several more months before she can hold up her head, and it will be over a year before she can sit unassisted. And two years after that, she’ll walk with a walker. And at age four, she’ll walk all her own.

She’ll tumble and fall and get up and walk and tumble and fall and get up and walk and she’ll get stronger. And stronger and stronger.

Today my girl likes to walk by swinging her right arm dramatically in the air. Today my girl saunters. Today my girl is five, and vibrant, and hilarious, and agreeable, and feisty, and happy. Today my girl speaks—with her voice and with her talker and with her hands. Today my girl is fully included in a typical kindergarten classroom (more on that in another post). Today my girl is dazzling, totally and utterly confident of her place in this world.

But this photo. It was taken just a day or two after getting the nurse’s phone call. It was taken just a day or two after we first heard the words “Wolf-Hirschhorn syndrome.” Which means this picture marks our five-year anniversary with our daughter’s genetic condition.

Wood is the traditional gift-giving material for a five-year anniversary. Feel free to send me pencils.

You know what I see in this photo? I see a woman who’s about to have her world rattled. Not yet. Right now, right here, she’s suspended in this long weekend with family. But soon she’ll have to face the bodily make-up of her kid, the cellular blueprints. She’ll have to face her own subconscious ableism, of course, but before she can even tackle that—her belief that a person with average intellectual ability is superior to a person without—she will have to face serious health concerns. She will not be able to take things like swallowing and sight for granted. A geneticist will want to know: is her baby swallowing saliva okay or will she slowly die by way of her own spit. A ophthalmologist will want to know if her baby can see and an audiologist will want to know if her baby can hear and a nephrologist will need to know if her baby’s kidneys function okay, and in the world of Wolf-Hirschhorn syndrome, none of those things can be taken for granted. This woman’s frame of reference is about to get turned on its head. And it’s going to be painful. And terrifying.

In about two months, this woman will sit in a diner after a swallow study, eating a giant breakfast of eggs benedict, celebrating that her baby can swallow her own spit. And she’ll know that most mothers don’t have this kind of “celebratory” breakfast.

This was my initiation into motherhood.

And this is what I still grieve sometimes. Not the kid I thought I was having when I found out I was pregnant six years ago. And not a different body for my daughter, who has a profound effect on the world in precisely the body she’s been given. But I grieve an initiation into motherhood that is less painful. I envy friends who have babies for whom no doctor asks after, “Did you do drugs while pregnant?” I envy the worries of a typical new mom, who wonders if the fussing is about a wet diaper or an empty belly. I envy the absence of the question, “Is this a seizure?” Or “Is she choking to death on her own spit?”

I look at this woman, three months into motherhood, her face still dewy and unwrinkled and clueless, and I grieve that she will have to hold her sobbing kid down for multiple catheter attempts. I grieve that she will have to cradle her baby and walk into the dark early morning hours as the ambulance lights flash on her face and the EMT’s help assess her kid’s vitals. I grieve that she will have to pay way, way more for this job of parenting than most of her compatriots. I grieve that she can’t just blissfully snuggle her baby.

So I want to tell her: cheer up. It’s going to be good…eventually. It’s going to be beautiful. It will become one of the best things about your life. Relax. Enjoy your baby. Relish her smallness. She will in fact grow. She’s beautifully and wonderfully made.

But I can’t tell her this. She couldn’t possibly know any of this any way. She has to forge ahead into the unknown.




19 thoughts on “The One Thing I Still Mourn: Notes on a Five-Year Anniversary

  1. This is the first weekend I met you and your beautiful Fiona. This just proves that none of know what anyone is going through at any given time. Thank you for sharing.

  2. I cried while reading this. This is what I grieve as well. It was when a friend told me she was worried about her daughter’s cold and I explained to her what retractions look like that I first realized just how abnormal my whole experience of motherhood has been. Thank you for putting it into words.

  3. Of all of the excellent writers now sharing their experiences with disability, you are the one who speaks most to my heart, and speaks my heart out loud for me. Yes, this. This post. Every post you write. Yes.

  4. Thank you for this post. We are three years in with having a child with a life threatening condition, Hydrocephalus. New diagnoses are still happening as we navigate this world and I know there will be more to come. I do mourn for a time when my days weren’t spent juggling therapy appointments, mountains of paperwork and a life without the DDD, Department of Developmental Disabilities coming every 90 days for new goals and objectives etc. I miss not having to make decisions that are not “life and death” decisions and I miss the old me. The one who didn’t cry all the time, who looked in the mirror and recognized herself, and who didn’t have that moment each morning that our son sleeps in wondering “Will he wake up?”. I don’t quite know who the new me is, still trying to figure it out.

  5. Thank you for your words, after a particularly hard month with my own child, it is so nice to hear my similar thoughts and feelings so beautifully articulated. I get so much comfort and strength through your writing.

  6. “But I grieve an initiation into motherhood that is less painful. ”

    Yep. Mostly I grieve for the expectations that I didn’t know I had until it became apparent that they weren’t going to happen and had to let go of them.

    Congratulations on five years of extreme parenting (to quote a friend whose daughter has a stupidly rare syndrome) and on five years of fearless (because she knows her parents will catch her) forging onwards and upwards to Fiona. 🙂

  7. The emotions, the thoughts are so similar with what I had lived and I live every day in this WHS journey. Your writing helps me to see clearly inside me. Thank you for this!

  8. Thanks for sharing, educating, and inspiring. As parents of a 14 month old with Wolf Hirshhorn, sometimes your posts are the only thing that ground us. We feel misunderstood by family, specialists, our pediatrician, everyone somedays; this blog is a safe place. So many of your comments ring true.

  9. God, I’m so tired. Sometimes it’s good, but everyday there is also brutal. I’m just so exhausted and there’s no end in sight.

  10. Thanks for your words, they are courageous, soothing, and straight from the heart. My 6 year old daughter has autism, epilepsy, ID and is nonverbal, and I relate to your posts so well!!! Every time I hug and kiss her I feel close to heaven. The entire experience so far is the most gut wrenching pain I’ve ever felt, and nothing compares to how hard the struggle for our family has been.

  11. I found your blog today. We spent 7 years living the world of hospital and doctors and therapies and when I went in to get my son up for the day in August – he was gone. Just like that. I think back to the early days and how we were clueless and now 7 years later and 5 years of his life spent in nonstop screaming I feel lost and tired and burnout. Thanks for sharing.

  12. Thank you so much for this, and all your posts (which I’ve just discovered) I’m also a mum of a cognitively disabled boy – almost 14 – and I have a picture of me and my sisters taken the day, when he was 2, when I was first made aware that his issues were serious (he also had a number of physical challenges at birth, but I had looked past his cognitive challenges until that day I couldn’t any more). And it is exactly like this – knowing now everything ahead, including the peace and acceptance, and the terrible struggles, but knowing then that I didn’t know, that I couldn’t know.

  13. We’re out here, mom’s just like you. With our rare-ies. And our sleepless nights. And the grief. My beautiful girl is 9.5. Not yet talking or walking and I still hesitate to adapt my home as it feels like all hope will be lost. Your settledness with your acceptance is inspiring. Can’t wait to read the book- just heard you on Kate Bowler’s podcast. Inspired. xo

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