Notes from the Land of Beauty & Difficulty & Joy

My family and I spent last weekend in a Harrisburg Sheraton with 300-hundred-some others, all of whom gathered in the name of a chromosomal anomaly. How could this be fun? you might ask. Even the itinerary sounds heavy: lectures on epilepsy, gastroenterology, wills and trusts. Presentations by geneticists, developmental pediatricians, parents who’ve lost children. As if to stem off the expectation, the organization that planned the conference even sent out an article beforehand with the title, “Is This Going to Be Sad?”

Fiona with balloons and a butterfly hat

Fiona with balloons and a butterfly hat

This was our second time at the conference, so I knew that while I might tear up once or twice (or, it turns out, eight times), I wouldn’t fall down a well of woe-is-me. Instead, if the last conference was any indication, this long weekend would bolster me for another two years.

But why? Why are my mother, my mother-in-law, my husband, and I all walking around saying what an awesome time we had at a conference about something most doctors and expecting parents consider “bad news”? I couldn’t fully articulate what the experience meant until yesterday, when I stood in line at a Walmart pharmacy.

The pharmacist behind the counter was a special brand of miserable, wearing an “I don’t want to help you” attitude like a laser shield around her. “Next!” she ordered the man at the front of the line, and he approached the counter. He was older, sixties or seventies, limping in brown pants. I saw the pharmacist’s face better than I saw his—she looked him up and down, and once her gaze reached his legs, her face wore an added layer of disgust. Then I saw it: the man was walking with a cane.

At the conference, wheelchair-users were as normal as people who walked, or (like Fiona) people who used walkers. Oral eaters were as normal as g-tube eaters, their clear plastic containers of blended food held high like lighters at a concert. And there was a concert—a live band inducing us to dance/bounce/scoot/wheel our asses off. At the second evening’s gala—a party better than your rich cousin’s wedding—we ate from carving stations, snapped photographs of smiling families, and donned feather boas and (Fiona’s version of heaven) bizarre hats. And when I say we, I mean not just people with 4p-, not just parents of people with 4p- or siblings of people with 4p-, but even nationally renowned experts on 4p-. Dressed in sparkly top hats and sunglasses the size of dinner plates.

Fiona, her grammy, & Friends

Fiona & Friends

Fiona and her grandmother in a dinosaur hat.

Fiona and her grandmother, wearing a dinosaur hat.

Fiona smirking in the butterfly hat.

Three girls in party clothes.

Three girls in party clothes.

Packed dance floor

Packed dance floor

But what was most present at the conference—more so than the live band, the full buffet, the glow sticks, the chocolate fountains, the wacky dress-ups—was the exact opposite of that Walmart pharmacist’s sneer. A total acceptance—an embracing, even—of difference. “Hello!” we said and hugged folks we’d never met, or folks we’d met only on Facebook, or folks we’d met only once in real time but who in some ways know us better than our oldest friends. “How old’s your child?” we asked, or people asked us, and nobody gasped at the answer. Nobody furrowed a brow or looked awkwardly away. We smiled, celebrated small increments of weight gain, cheered recent feats in nonverbal communication (pointing! signing! assisted typing!), applauded mobility in all its forms: a woman who can scoot, a four-year-old who, this year, can steer his walker.

Fiona's friend dancing with his walker

Fiona’s friend dancing with his walker

Absent was the belief — pervasive outside the conference — that the more able-bodied a person, the better his or her life. Instead, the typical yardsticks were tossed in favor of figurative and literal open arms. To be surrounded by this level of openness is otherworldly.

At this conference, we like to grab other people's kids.

At this conference, we like to grab other people’s kids.

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Kammy & me. Check out http://kammyskause.org

It wasn’t Pollyannaish. Nobody ignored the difficulty. Nobody pretended that this life is as gleaming as the shiny metallic walkers and wheelchairs we carted in our hatchbacks or on the plane. This is a hard life, said a presenter, a father, a man who embodies joi de vivre, and he said it to the crowd of 300-something who knew what he meant — Yes, this is a hard life. And that was tear-jerker number two for me, because Yes.

At one session, my head titled upward toward the projected Youtube video, waiting for the moment when an oblivious, cooing infant would seize. I tried not to blink; I tried not to miss it. This is a tonic-clonic, said the neurologist, and as if suddenly gripped by rigor mortis, the child stiffened, hard as a board. See how there’s a tonic period, (the stiffening) followed by a clonic period, and (tear-jerker number four) the child’s muscles relaxed some, then started convulsing. Seizures still get me, still seize me, simultaneously make me want to avert my eyes and keep looking. And not because it’s a car-wreck and I’m safe on the other side of the highway, but because, just like I want to be present for Fiona’s suffering, I want to hold the seizing child with my gaze and offer at minimum the gesture of my knowing. I can witness it. I can behold the worst of it. After this session, I needed to eat and I needed a nap.

But this lecture was practical: I learned my daughter usually has, not tonic-clonic seizures like I thought, but just clonic seizures. Just the jerking, not the stiffening. Why this matters, I don’t know. But I like the right names for things.

I’ll let the seizures stand for the difficulty, but of course there are others. We all have our stories—specialists, therapists, tests, hospitalizations. We don’t always talk about them. But here we can. In a hot tub, with total strangers, after the standard introductions (name, town), we might jump to status epilepticus—a father witnessing his daughter seize for hours, and how, afterwards, she lost the ability to babble. We talk about this because finally we can say, almost as quickly as our names, those things we don’t say to average strangers. And we nod in reply. We sit in the heat of it like we sit in the hot water, knowing it could be any one of us.

As for my daughter, she was treated, not like an enigma, not like a puzzle piece that won’t fit the picture, but like a VIP, her very name-tag saying as much. Her dinner was a perfectly pureed meal, delivered specially by the waiter and served on a platter in two silver bowls: pureed chicken, pea soup. After getting bites of both, she signed more, slamming two fists together emphatically. And for once in her life, every single person in that room would have understood this as a triumph: not just the signing, but (perhaps most strikingly) the love of a single bite of food.

Now, we are back in the real world. When I see families in restaurants or stores, I instantly look for their child with the lanky body and the face like Fiona’s, and then I remember. I’m not at the conference anymore. Here, normal is the norm again. Call him Norm, a man in brown pants, a man at the Walmart, but he’s not limping or holding a cane. Normal is sometimes the cashier’s sneer, or at best, the questioning gaze. It’s okay, being out here. It’s real life. But we just spent three days in another land, and simply knowing it exists emboldens me.

Fiona with her walker

Fiona with her walker

Her sister, chasing after

Her sister, chasing after

On the final day of the conference, a few dozen mothers gathered in a circle and shared. I won’t tell you what they shared. But I can tell you what everyone in the 4p- community already knows: that when some geneticists deliver the news of the diagnosis, they inform parents that their child will never do more than stare at the ceiling. This isn’t true. But these parents take this news home with them like black veils, and they wear the veils across their faces as they grieve. It can take months or years for the veil to lift.

Still, even better-informed and more tactful doctors (such as ours) are compelled to offer the hard truth: that walking and talking and eating by mouth are no longer givens. That when you have a child with 4p-, everything you expected about life as a parent is ripped out from under you like a carpet, and beneath that carpet, no ground. Just air.

But the longer I live this life, the more I’m convinced of something: floating in that groundless space can invoke awe. I take less for granted. I smile because someone can swallow. I laugh because a nonverbal child invents ways to manipulate me. I behold what I would have seen as small, and understand it as a mountain. I hug near-strangers. What I mean to say is, the flip-side of the difficulty is the beauty. So on the final day of the conference, when I looked around at a circle of mothers (and also looked around for a tissue, because I’d just experienced tear-jerker number seven) I said this to myself, a sentence more honest than my younger mothering self would have believed: My life is richer with this.

And by this, I meant this land of beauty and difficulty and joy.

Fiona and balloons in motion

Fiona and balloons in motion

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9 thoughts on “Notes from the Land of Beauty & Difficulty & Joy

  1. How is it possible that I rejoice for my daughter and her husband because of the life she is living with both of my magnificent Granddaughters and yet cry because it is so hard? Because of exactly what she wrote – it is all so true and we are so very blessed to have the child God sent our family- her name is Fiona and our lives are more perfect because we have her.

  2. Thank you for tear-jerker number one today. 😉 As always, a beautiful post that so perfectly describes what I think most of us felt at the conference– acceptance, love, hope and joy. ❤

  3. Beautiful post — so, so beautiful. It makes me think about my own early years of my daughter’s diagnosis and life — how twenty years ago, we didn’t have this amazing ability to connect with one another, how isolated we were and how little opportunity there was to share stories such as yours. When people deride the internet or Facebook or other social media, I raise my eyebrows, wonder what life would have been like in those early years if I’d been able to really connect with people like “ourselves.”

  4. Such an exquisite piece. You captured the complexity so nicely. I’m glad you are able to find community that deeply understands you at the conference.

  5. Pingback: Joie de Vivre Over Possibility and Ability

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