A Child’s Diagnosis

[ 11 ] November 28, 2011 |

Diagnosis day, at the Museum of Science

Two words that look yucky together: child and diagnosis. I had the wind knocked out of me by a diagnosis of head lice two years ago, and found myself searching the night sky for clues: Why me? More recently, my eight year old was diagnosed with Type 1 diabetes, and I had precisely the same response, although this time the anguish unfolded in Hasbro hospital instead of the vermin shampoo department of CVS. Why me?

Parenting is, of course, full of surprises of all flavors—joys and sorrows. My sorrows have always been numerous: poop got on my new sweater and our babysitter left for college and someone stole our stroller off of the porch and lice. But disease? I didn’t sign up for any diseases. But we got one. So I can vouch for the cliche: Everyone Thinks This Stuff is for Other People but it is Quite Possibly for All of Us. (Sorry.)

It started in August with a shortage of drinking glasses. We were always running out. I noticed Bud using the water dispenser in the fridge door a lot, but it didn’t seem strange. It was hot. We were all thirsty.

Later in August, we went to the Boston Museum of Science. There were Tamarin monkeys, but Bud seemed distracted and didn’t want to observe them for long. Instead, he wanted to go to the bubbler. Soon after, right in the middle of a childbirth movie, he asked for another drink. Partway through a really cool exhibit on optical illusions, he wanted to go to the bubbler again. And then again, after much too short a time watching billiard balls careen through the Museum’s giant Rube Goldberg contraption.

And so, after many drinks, bathroom breaks, futile nudges of encouragement, and possibly a tiny scrap of enthusiasm for science, we agreed that we’d had, as a family, enough of whatever it was we’d been attempting to experience at the Museum of Science.

On the way up to the top of the parking garage, our older son was chatting away about the Museum’s live owl show, and did they really used to make orange juice from a can and dilute it with water, and on the way home can we listen to Judge John Hodgman? Eventually I noticed that Bud was silent and slowing down. He was attempting to rest his head on the staircase’s grubby metal handrail. I stopped holding his hand, and held him instead near the armpit, like a bouncer. Come on, honey. He started to cry. “Water! Water! I need water!” It was obvious something was way off.

Entering the hospital felt like a scam, but everyone working there seemed to think we belonged. It was as if they’d been expecting us. The room, the equipment, the staff were all lined up and ready. They gave us each an ID bracelet and that was it: we were admitted to Hasbro Children’s Hospital. Where the unlucky people go with their children.

Each medical professional we met spoke as if Bud was a genuine patient. The blonde doctor in the ER with the Barcelona accent. The head resident in green tennis shoes with mustard-yellow piping. The nurses bustling in and out to hunt for one good vein on Bud’s inner elbows. They gave him an IV. That seemed extreme. Kind people told us different numbers that meant nothing to us, and said how lucky we were that we brought Bud in when we did, before his health had deteriorated further. It all seemed a bit over the top.

I was sure a laboratory error would be discovered and we’d laugh all they way home. Why did this hospital persist in wanting us so much? The feeling was familiar, like being asked to square dance in fifth grade by a clueless, swaggering boy with dandruff and B.O. He thinks I’m going to dance with him?! I am so out of here.

My first whisper of an inkling that the hospital people knew something came once we were out of the ER and up on the fifth floor, where the certifiably sick children go. Bud was hooked up to a tangle of tubes. Wearing a children’s hospital-issue pajama top featuring a pattern of bears or dogs or bear-dogs. No longer begging for water. Watching Dennis the Menace on DVD. Calmly requesting a bean and cheese burrito.

Jango Fett gets an insulin injection before trick or treating.

In the three months since then, Bud has become completely accustomed to injections and blood tests, and his dad and I have become almost completely accustomed to administering them. We have a somewhat complicated rigamarole of eating/insulin/always having medicine on hand, and have close email relationships with both the school nurse and the pediatric endocrinology team at Hasbro. It all feels pretty normal.

Now that diabetes is firmly situated in our lives, the world feels so full of potential. For disaster—so many bad things might happen! It’s self indulgent and shameful, but my mind wanders to all of the things going haywire in other kids we know, and whirls up a soothing list of things to which I prefer Type 1 diabetes. I inventory this mental list for comfort, whenever I’m beginning to feel cursed. The list includes, but is not limited to: cancer, congenital heart conditions, deafness, autism spectrum disorders, obesity, warts, ADHD, peanut allergy, wheelie sneakers, dirty fingernails, extremely chapped lips, and Pixar motif backpacks.

Given the choice, any reasonable parent would saddle their child with a Lightning McQueen bag rather than a chronic disease. But no parent would trade their sick kid for a healthy one, because then it wouldn’t be their kid anymore. I’ve spent many sleepless nights wishing diabetes away, but I’ve settled into believing a Bud without diabetes wouldn’t really be a Bud at all. And so we happily accept diabetes and whatever else comes with the package, fingers crossed that we get to keep the kid.

Category: child development, community news, family matters, kids, parenting, special needs, wellness


Katy Killilea

about the author ()

Katy Killilea lives in Barrington with her husband, their sons (2001 + 2003), and a dog named Butter. She works as much as she can as a freelance writer. Katy loves running, cooking, sudden trips to new places, loud corduroy pants, and being taken to the Beehive in Bristol.

Comments (11)

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  1. Megan says:

    Such a beautiful, honest piece. Thank you.

  2. S says:

    Thank you for your honesty and celebration of your baby! He’s so lucky to have you!!!

  3. Elyse Major elyse says:

    wow. i echo megan’s comment and thank you for sharing all of this.

  4. Amy Hood amy says:

    Thanks for this wonderfully written window into your experiences.

  5. Ilira Steinman says:

    Thank you for your candor and humor and this beautifully written piece that will bring solace & comfort to many.

  6. Maria says:

    A wonderful piece. Thank you for sharing! (My brother was diagnosed with Type 1 Diabetes at 12. I recall watching him chug whole gallons of juice with the fridge door open. We all had to learn to inject oranges! He is 34 now and doing just fine.)

  7. Katy Killilea Katy Killilea says:

    Thanks for reading it! It made me feel sort of…better (?) to say all of this and get a little shower of attention. So I’m very grateful for your time and nice comments!

  8. erin goodman says:

    thank you so much for sharing this piece of your heart, katy. it is just beautifully written.

  9. Thank you for sharing this story of your life. Our son was diagnosed last month with epilepsy–your experiences resonated with me in every way.

  10. Geannie says:

    I love the honest thought in this post. I can barely imagine what you’ve gone through.

    I am the diabetic around here. The diabetic mom. The mom who’s had diabetes since she was 8. The mom who kicked herself for years (& sometimes still does) b/c she passed out multiple times when her two sons were babies. :(

    You hang in there. It will get better. And it will get worse. But the worse times don’t last forever either. :)

    My boys are now 18 & 23 and this mama is hoping that soon 23yo & his wife will make me a diabetic gramma. ;)

    Diabetes sucks. Life doesn’t.

    God bless you & yours!
    Geannie aka kyrain67

  11. Eileen Famiglietti Eileen says:

    beautifully written article!

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