Occasional Grief of a Special Needs Momma

At some point this week—I can’t quite name the day—I woke to a quiet grief that had something to do with Fiona. I hardly noticed it at first.

Where did it come from? What’s it about? The grief seems as silent as that foot of snow still on the ground. The snow has melted some. This part isn’t metaphor. The snow started melting around here on Monday, filling the roads with streams. Water dripped from the gutters. The snow melted into puddles for Petra to splash in. Then it refroze. Now the walkway to the car is coated in ice. The bare branches wait stiffly. We’re looking at snowflakes on the five-day forecast.

My grief seems as silent as the foot of snow still on Fiona’s school playground. All winter, the playground surface has been inaccessible to her walker. I park the car in the school lot and watch a class of four-year-olds, giant four-year-olds, trample across the playground, picking up snow with their boots, chasing one another. I know that beneath the snow are wood-chips, which is not considered an accessible playground surface either. Somehow in the fall Fiona managed to maneuver her walker over them.

But snow fell. Feet of snow. And it hasn’t melted. And so my kid can’t navigate the playground independently. I sit in the car and watch the giant four-year-olds running in the snow, and before I turn the car engine off, I wonder: is it the groundskeeper or God who isn’t ADA compliant here?

When I get inside the school, the teacher announces that the kids are all wet from the melting snow. I nod. I suspect Fiona will be dry.

I don’t realize this is part of my grief. I don’t realize it because I don’t yet notice the grief.

Parents behind me discuss summer plans for their kids. The word “T-ball.” The phrase, “Twenty dollars, and you get a free T-shirt.” I watch my girl through the classroom window. She takes independent steps now, but they are shaky, pigeon-toed, stilted, and she falls a lot on her butt.

When Fiona reaches me, she is dry.

I realize the word “T-ball” is part of my grief. I begin to realize I have grief at all.

The next day, I take Fiona to the doctor. She is screaming inconsolably. My husband and I don’t know what’s wrong. She has no words to tell us what’s wrong. The doctor has to examine her body to find the culprit. It’s her ears. She has an ear infection. This is her third in a month.

The grief is as silent as the snow and as silent as the words she cannot use to tell me about her pain. I realize her wordlessness is a part, a big part, of the grief.

I ask the doctor if we should see an immunologist. The geneticist had told me that kids with Wolf-Hirschhorn syndrome should see an immunologist if they keep getting sick.

The doctor considers this. “Let me check something,” he says, and comes back with a navy, encyclopedia-sized book. He says this is a bible. He shows me the cover. In the title, I read the word Malformations. I try to pretend I didn’t read that word. I try to pretend the language of his medical world isn’t offensive.

This time, the word malformation isn’t part of the grief. This time, the pretending is part of the grief.

I pretend because I like this doctor. He’s a genuinely good guy and he means well and he bats for us, and he’s intellectually curious. He likes research. He’s enthused by the idea of his malformations bible. He tells me everything is in this book, and by everything, I’m pretty sure he means every malformation. I nod. I am holding Fiona. She is weeping, red-eyed, wanting sleep.

He turns to the index and hunts for Wolf-Hirschhorn Syndrome. He pauses, flips pages. “W-E?” he spells.

“W-O,” I spell.

“It’s not here,” he says. He mumbles to himself, almost sadly, “It’s too rare.”

Or maybe it’s me who hears it sadly. It’s too rare.

This is maybe the biggest part of the grief: belonging to a club with so few members.

The doctor is undaunted. He gets his laptop, says there is one more place to check. A website. He starts spelling the syndrome, and I finish for him, imagining that each letter echoes into a huge, empty cave. It’s too rare.

He finds the syndrome online. He reads the description with me, but I have already read the description a dozen times before. He scans his finger over the computer screen, finding words I already know, words I read late one night when faced with the task of googling my then-three-month-old’s chromosomal condition. Dysmorphic features. Short stature. Severe mental retardation.

“Bone abnormalities,” he says enthusiastically, like he’s shouting Bingo. I really do like this doctor. He notes her scoliosis.

The website’s description says nothing about the immune systems of people with WHS. It’s too brief, too cursory. He closes his laptop.

I feel sad for him and I feel sad for me. His literature has yielded us nothing, and he wants literature to prove what I’ve already told him: kids with WHS should see an immunologist if they get sick a lot.

This is also part of the grief: I know more than the doctor. I might always know more than the doctor. I wait patiently for the doctor to realize this.

He’ll make a referral, he tells me. He sings the praises of the immunologist at the children’s hospital. He’s back to being energetic.

Then he looks at Fiona. Her eyes are glassy from fever, red from crying. She’s curving into my body, weeping, longing for pain relief and rest. “She’s really special,” he says, like it’s both a fact and a fortune. Like it’s a statistic and a song. He’s touched by her.

“I know,” I say. “She’s got a bright light in her eyes.”

“Not today,” he says, and calls in the prescription.

There are no bad guys here. The absence of bad guys is part of the grief.

You will always grieve the child you didn’t have, someone told me when I first had Fiona. It was a warning and a membership card: Welcome, New Mother, to the Country Club of Eternal Grief. This friend was decades into parenting a child with disabilities, and she meant I would always feel sad for not having the typical kid that I thought Fiona was while I was pregnant with her.

Through Fiona’s first year, I took that club card and carried it. I grieved a lost idea. I mourned for a hypothetical kid. But eventually I either threw that club card in the trash or lost it. I’m not sure which. There’s no ideas but in things.

I don’t think I’m grieving for a different kid. I think I’m grieving for a different club. A bigger club. Or just more members in the club I’m already in.

The night after the doctor’s visit, Fiona is falling asleep on her father, and I wash dishes and listen to a podcast about parenting. I want to connect with other parents. I try to find an episode I can relate to. One is about a mother and her child’s holey heart. This sounds as close to my life as I can find.

Within the first few minutes, I realize I can’t bear it. The toughness of the mother’s road ended with the kid’s holey heart. I mean, holes in his heart were all he had. The toughness of my mothering road began with a holey heart. I mean, a hole was our first diagnosis, not the grand sum of our baby’s anomalies. A hole was just the start. A hole in her heart was an arrow pointing forward, into a forest too rare for maps.

Deep in this forest, there aren’t any podcasts. There aren’t other voices. There is my wordless daughter and her wailing when she hurts. There is my guessing. “Do you want to eat? What’s wrong? Do you hurt? Do you want water?” Somewhere in this forest is a cave into which I can spell her too rare syndrome. On the ground of this forest, the snow hasn’t melted yet, and it lays over the grass and the tree roots and the wood chips, and God is not ADA compliant, and so I carry my daughter over the snow, waiting for spring.

Fiona sleeping on me.

Fiona sleeping on me.



22 thoughts on “Occasional Grief of a Special Needs Momma

  1. Whenever I read your work, I am at a loss for how to express my admiration. You take the hardest things in the world and put words to them–not just words, but the glorious heart of language. You are amazing. Your daughter is amazing.

  2. I agree with Julie and Jocelyn, your writing is so beautiful but for me as a mother of a son who has taken us on a lomg, hard journey, it is poignant. Sending you heartfelt hugs and try to find a little time for yourself too.

  3. yes, you write beautifully. I enjoy your blog because of your writing as well as because of your subject.

    Get a doctor who specializes in Fiona’s syndrome. Someone who does know more than you do and who is working to learn more than S/he and the world knows at this time, and can keep you apprised as new info is discovered, perhaps some of it contributed by Fiona and you. That is what those of us who have children that have a non mainstream issue do. We use our local doctors, the pediatricians and even the specialists to get access to the everyday medicine and care we need, such as Fiona’s immediate need for treatement for her ear infection, but for anything specific about a rare condition, we need to go to someone immersed in it to give us the guidance, the ones who write the books, and not merely happen to read or even own one.

    Two beautiful girls, and your writing makes them more beautiful still. Also be aware that even those with mainstream kids, rather than mainstreamED ones, also have the same griefs that you felt, but not as often or as severe. All of us have special needs and they can go out of the lines at any time during life. Your Fiona, you are aware of her needs upfront, though for her too, she is not exempt from further things to arise.

    Much love

  4. Praying that you find that circle of support that you need – that team of people who have traveled at least a portion of the road that you are on, who can validate your grief and help to hold you up, who can answer some of the questions you have. It’s hard to feel alone when there are such challenges.

    And for the record, Fiona might be the cutest kid I’ve ever seen.

  5. It’s stunning how the grief visits and disappears, often when you have no idea that it’s even still alive. You’ve written so beautifully here about so many different things, and despite the smallness of your “club,” it pertains to many of us, resonates with many of us in its evocations of the joys and sorrows of extreme parenting.

  6. My goodness this is beautiful.
    This: “A hole in her heart was an arrow pointing forward, into a forest too rare for maps” I know just what you mean. When something others consider serious is only a small marker to a much bigger syndrome. Eva was just the same.
    Thank you for writing so openly and eloquently. We need more voices like yours to shine a light on what it’s really like. What it feels like.

  7. Hi Heather. I’m writing to let you know your club just got a little bigger. I came here from Tessa’s link and am so glad I followed it. My daughter Margot has 1p36 Deletion Syndrome (not even a token name!) and I’m a carrier for both this syndrome and Wolf-Hirschorn, which I only found out about after a genetic test when Margot was five weeks old. As others have said, your writing is beautiful and quite comforting as it makes me feel less alone. I’m just beginning to find my voice and write, so perhaps there’ll be an echo in the forest, calling back at you with a familiar tenor but tune of its own.

  8. I also love your writing, and always find your posts both cathartic and comforting. We belong to a pretty small club here, too; in fact, I think we are the only members. My daughter has three different rare genetic disorders (due to a double non-disjunction during meiosis) and they know of no one else who has all three. Like Fiona, she has complex communication needs, is often a medical puzzle to her doctors, who then look to me for answers. And she sheds a beautiful light all around her. We live in rural, Central PA. Without the internet, this journey would be extremely lonely at times.

  9. my daughter has cerebral palsy and I cannot tell you how many times I’ve sat and cried reading your blog. Thank you for putting into words the things that I cannot fully articulate.

  10. Heather, You have a wonderful gift in writing. Thankyou for sharing and articulating what so many of us feel yet are unable to communicate with others. Please continue to share your poignant thoughts and life with your beautiful Fiona! I can now see how special needs parenting just changes your entire vision of being human. Thanks so much to your contribution to the special needs community, never hold back and keep posting!

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