Of Hats & Hospitals

The vast, bright main floor of Dartmouth-Hitchcock Hospital is covered by an atrium. The hospital is infused with natural light, occasionally adorned with ficus trees and other foliage, and busily occupied by all kinds of people in suits, scrubs, dresses, jeans. People strolling slowly and people walking fast. People idling in lounge areas and people with somewhere to go. Dartmouth feels like a mini city, one that smells faintly of Au Bon Pain sandwiches and Sbarro pizza.

This is where my husband and I take Fiona every six months for a scoliosis X-ray, to see if her spine’s serpentine curve remains stable. This is where my husband and I took her yesterday. We consider the trip an obligatory loss of a good day that mostly takes place in the car (4 hours round trip). But Fiona considers it an opportunity to spread her social skills and love of hats to unsuspecting strangers. Wearing my husband’s faded blue baseball cap, she walked around, eyed every person she passed, pointed to her head, and said, “Hat!” She’s not yet three feet, so she’s hard at first to notice, but once people spot her, they can’t look away.

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{Photo: Fiona seated on a wood bench, wearing a faded navy baseball cap backwards. She’s smiling at a person in front of her, whose arm is pictured.}

“Oh my God,” a woman said in awe.

“Isn’t she cute!” someone fawned.

“Look how adorable!”

“Yes, I like your hat.”

A leader in a Down syndrome community once told a leader in our 4p-/WHS community to avoid portraying our kids as cute. It can diminish our kids’ needs and concerns, and people won’t take them as seriously. I totally get that. But it’s undeniable: Fiona charms people with her cuteness. As I walked beside her in the hospital, all I could do was smile in detached amusement as my kid has clearly fallen miles from the tree. As an east-coast introvert, I say hi to pretty much zero strangers. My girl says hi to every single one.

“Guy!” she cried out to them once she’d passed, meaning “Bye,” and she cast her hand behind her in a nonchalant wave. She seemed to believe she was a minor celebrity, on a mission to advance her fame.

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{Photo: Close-up selfie of Fiona and me. I’m smiling, wearing glasses. Fiona is grinning, wearing sparkly sunglasses and a bright pink ski cap.}

Four-plus years ago, I carted this same kid in an infant carrier through a similar atrium of Cincinnati Children’s Hospital. She was onyx-eyed back then, the black irises not yet letting us know they’d turn blue, and that blackness represented a host of other unknowns. She was not yet smiling, not yet holding her head up, not yet letting me know what Wolf-Hirschhorn Syndrome had in store for her, or us. Would she make it to age two? Could she swallow her own spit? Were her kidneys functioning? Refluxing? Would her seizures ever get so bad she’d lose developmental gains, or worse? In those days, the plastic infant carrier banged against my leg as I hauled Fiona down the hospital’s corridors, toward rooms that were prepped for tests. The bright, natural light of the atrium hit my distraught, nearly-weeping face as I told myself that no mother should have to spend the first year of her child’s life this way: ultrasounding organs, testing swallow capacities, monitoring brain waves.

Now I watch my kid make her own way through a similar place, lighting up everyone she passes.

At Dartmouth-Hitchock, as I spotted an adult pushing another adult in a wheelchair, I recalled my early expectations that a hospital would feel like the one place where my infant daughter belonged. As a new mother, I was getting tired of people’s disconcerting glances at my baby’s very tiny body. But I reasoned that doctors were surely used to the body as different. Doctors would surely revel in the myriad unique ways a body could present itself. A hospital, I thought, would be the one place where we’d feel normal.

That expectation quickly faded. Early on, I learned that most doctors saw different bodies as defective. I learned that most doctors saw themselves as fixers of these defects, and that if the bodies they encountered couldn’t be fixed, the bodies offered the doctors little in the way of intrigue or excitement. This shocked me. I learned that hospitals could be some of the most inhospitable places for people like my kid. (Bill Peace writes about this phenomenon in his article, “Comfort Care as Denial of Personhood.” His blog, Bad Cripple, is a must-read.)

This medical principle—that doctors preferred bodies they could fix—was written even into the architecture of Cincinnati Children’s Hospital. The cardiology department, for instance, was huge and gorgeous and well-lit, adorned with elaborate artwork—sculptures and paintings of hearts. Here, the heart was paid homage. Here, the hearts of children were fixed.

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{Image: Valentine heart-shaped sculpture at Cinci Children’s. The top half of the heart is painted with indigo clouds. The bottom half is covered in multi-colored squares. Red hearts, about the size of two hands, cover the heart.}

But the genetics wing, it was dingy. Crammed into a corner of the hospital, it was windowless, had harsh yellow lighting, and an old creepy mural on what I remember as a cinderblock wall, evoking the aesthetic of a long-abandoned Sunday school basement. I forget the exact images of that mural but its quality paled in comparison to the art of the Cardio wing. The message was loud and clear: Genes get less money. I reasoned that this was because genes can’t be fixed.

In the first year of Fiona’s life, we visited the geneticist every three months or so. I recall a particular visit, our second or third. I’d done my homework. I’d read what doctors had written of Wolf-Hirschhorn Syndrome. I’d read what parents had written in blogs about their children. I’d started following parents’ conversations online. And I’d noticed that the two groups—parents and doctors—held wildly different narratives about people with the syndrome.

The medical narrative: your child’s body is damaged. This syndrome is sad. This syndrome is a litany of limits. Developmental delays. Low tone. Seizures. Kidney reflux. Heart defects. Intellectual disabilities. Brain abnormalities. And on and on. Life-span limited. Bodies broken. I’m sorry and [insert a half-smile] good luck. She’s beautiful though. She’s got good eye-contact though. She might be higher on the spectrum, you never know. [In other words, there’s hope for your kid still to be a person we value.] We’ll wait and see. Come back in three months.

Here was the other narrative, the one I heard from parents: my child is human. Complex. Loved. Beautiful. Capable. My child keeps learning. My child loves music. My child does not speak but can crack a joke. My child does not walk but can torment his younger sister. My child has proven every doctor wrong. My child is an excellent judge of character. If you are an asshole, my child will not like you. My child is loved. Loving my child hurts. I carry grief. But the grief is a heartbeat inside a body of love, bigger than any Cardio wing’s heart sculpture. I wouldn’t have it any other way.

Here is what I, the new parent, thought of these two narratives: They are incompatible. And because I believed the parents knew their children best, I thought, The doctors must be wrong. I thought, The doctors must be misinformed.

So on this second or third visit, in the windowless, dingy Wing of Genes, I mentioned this to our geneticist. I told him I noticed that doctors paint a doom-and-gloom picture, while parents describe a hopeful life. I thought he would reply with something like, Yes, we don’t know as much about WHS as we would like. I’m encouraged to hear that people with WHS are doing so well!

Instead, he replied something like, “Parents usually paint a more optimistic picture of the syndrome.”

In other words, parents’ views are rosier than is right. In other words, These here medical lenses, these black Warby Parker frames I wear with my white coat, they offer the true way of seeing your kid.

I will never forget this discord. It taught me instantly that the difference in narratives couldn’t be explained by a difference in information. The difference was one of perspective. I realized there were many ways of viewing Fiona and people like her, and that the dominant one, the one in power, the one with enough money to build atriums above its hallways, can’t help sometimes but sketch a big fat frowny-face over my kid’s life.

But this isn’t a sad story, friends. Please remember our visit to Dartmouth yesterday. Please remember this image: Fiona waving heartily to every stranger, each once-unsmiling person now grinning with brief delight. Here was my daughter, walking inside the very belly of the medical model. And it’s a medical model she admittedly needs at times: to measure her scoliosis curve, to ultrasound her kidneys, and so-on. But it’s a model in which she so-far remains unfazed by its agenda of labeling and diagnosing, of fixing or frowning. She moves through its very architecture untouched. Hi there! Hi doctor! Hi nurses! This is my hat! You can pronounce my litany of diagnoses, but I can change your neurochemistry in a half-second.

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Fiona rocking purple hospital jammies before her X-ray. She’s seated on a wood bench, looking up into the camera, smiling widely.

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12 thoughts on “Of Hats & Hospitals

  1. I love your articles about Fiona, especially this one. She is an amazing child and you are an amazing Mom! Even though I was a special education teacher and a school psychologist, your articles have taught me much about acceptance of every human being on this earth.
    Fiona sounds like a vivacious, outgoing, communicative child!
    Thank you.

  2. Beautiful post. I believe the best writing is the stuff that finds what is true and teases it out from what is expected, what is normal, what is accepted. And I love the way you write about Fiona.

  3. I live in a very rural, sparsely populated area of central Pennsylvania and a family I know and am friends with have 4 children with 2 boys, then 2 girls. The older girl who is now 10 or 11 has a very rare genetic disorder with all kinds of complications -non-verbal, needs a feeding tube and special diet, has seizures very frequently too among other things. Her parents deal primarily with a huge medical center near the eastern part of the state (Geisinger) along with visits to specialists at PHilly CHildren’s Hospital and Penn State’s Hershey Medical Center and now, they are waiting to hear from NIH (National Institute of Health) in Bethesda, MD about taking their daughter there for more tests of this problem or that issue, etc. Their other children -especially the two older boys – are terrific with her and take her for rides on a golf cart they got, plus as the weather warms, they will be in the Make-A-Wish above ground swimming pool that the girl absolutely loves and handles herself quite well in the water. The younger child, who is only 2 years old, is even tuned in to helping her big sister and also, alerting the mother if she sees or senses a need of the older sibling. It’s amazing to see teens/preteen boys do the things they do and how they monitor their sister so very well. The family has no prognosis as things stand now what, if anything, can be done to give their child a relatively normal life. even if she will survive the constant and changing stream of ailments that seem to befall this child. But the family -all of them -soldier on, trying to find anything to grasp onto for a ray of hope for their daughter. Another family here have a little girl who is now 4, perhaps 5 already, who has Rett’s Syndrome and they too run a path fairly similar to the larger family always something, you know. Lucky for each of these families that they have been fortunate enough to have found very good, very caring doctors who try everything within their power to find ways to help these two beautiful children make progress, of any kind! But, it is a very strenuous path they have to walk in order to try to make things better, no matter how small a triumph it is, it is still something to hold onto and keep them motivated to finding more ways for their girls to advance. My heart goes out to you as you work your way through the maze of doctors and hospitals and seeking out things that will be helpful to your sweet little girl. My Dad’s youngest sister had one child, a girl, born with numerous congenital issues back in 1957. At age 2, the doctors had told my aunt her daughter would most likely not live beyond age 10-12 and she would never walk, never speak either. But, my aunt persevered in looking for doctors to examine her daughter, never giving up on her, got physical therapy done for her in the home, dug out all kinds of teaching devices she had on hand (she was an elementary school teacher), got a speech therapist too, and proceeded to create her own system of working with her daughter. Eventually, she did learn to take a few fleeting steps, she could signal various things she wanted to play with, what tv shows she liked and wanted to watch and eventually, the speech therapist got her to say something that sounded to him like “Mama” and that event totally made my aunt’s day, month and years to come her best day ever. Today, that cousin lives in a nursing home about 22 miles from my home and she just turned 59 years old this past February! It may not qualify to many folks as a big deal that she has survived this long, that she was able to do some of the things my aunt tried to teach her and it’s her “norm” now. Just keep on keeping on with what your doing, dealing with things as you see them and maybe -who knows -eventually you’ll come across a doctor that sees Fiona as closely as possible were he/she looking at her through your eyes. God Bless!

  4. Everyone that has children, should take the time to read these articles! It truly doesn’t matter if your child has disability’s or not. I really wish I had this kind of information while I was raising my own. Your articles help more people than you know…all in different ways. God bless you and your family!

  5. Wonderful piece. I appreciate the way in which you use person first language and illustrate the contrast between the medical and empowerment models. And I remember that Atrium from when I used to live in NH near DHMC. Thanks for the memory too 😉

  6. Studies show that doctors routinely underestimate the quality of life and happiness of people with disabilities, compared to people with disabilities themselves. (Really, ourselves – I’m both disabled and a doctor.) It’s partly a matter of perspective and partly a matter of being taught, in medical training, to devalue the lives of people with disabilities. Sometimes it depends on the specialty – ICU doctors tend to have a more negative perspective about children with muscular dystrophies than rehab doctors. Unfortunately, most doctors never read these studies so they keep thinking their idea is the truth, rather than their perspective.

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