For years I made light of Savannah’s condition by telling her the angels gave her a medical alert bracelet so they would always know where to find her. It would satisfy her little girl curiosity and she would go back to coloring or watching cartoons. Now, confused by a father’s ignorant comment that “you’re missing a piece in your head” she will press back with “No, seriously, tell me!” And, for once, the mom who makes her living as a spin doctor for big pharma, who has never been hesitant to take on a Wall Street Journal or New York Times reporter for writing negatively about one of her clients, is lost for words.
It was a blistering hot July afternoon when I was pulled into a hall at Long Island College Hospital and told my two-month old has pan-hypopituitarism, a rare endocrine condition that affects 1 in 50,000 kids. It was after weeks of tests and late-night emergency room runs, so I was anxious, but too numb to cry. I also didn’t want the haughty Argentine doctor, who was more curious about my marital status than my daughter getting properly treated, to see me any more emotional. After she barked over a hospital bed where my then five-week-old lain wrapped head-to-toe in wires “No more questions!” she had become as irritating as sand in an open wound. The minute she gave the official diagnosis, I had planned to dump her and find both a doctor and parents familiar with Savannah’s condition.
When I finally located my “people,” the small handful of parents with pan-pit kids, I was hoping for a love fest, convinced we would embrace and sing kumbaya. Instead, I found a bunch of helicopter parents raising their kids as the “boy in the bubble” and a lot of “you can’t do that’s.” I wanted to hear about kids overcoming adversity and getting scholarships to Stanford and winning the local spelling B, but instead came stories of how the insurance company screwed up a drug shipment and an adrenal crises that landed their kid in the hospital. As a single mom with no back-up, I couldn’t afford their propaganda. I needed my daughter to be conscious of her condition but not self-conscious. I also never wanted a teacher, student or another parent to point and say “that girl.”
The approach has largely worked. Compared to other kids with her condition, Savannah is ahead of the curve. She is mindful of the times she has to take her medicine, and can already prepare her own injection, but she is now 9 so wants answers.
My desire to help Savannah find her “people,” the kids with medical alert bracelets and who ping pong between doctor appointments, but don’t adhere to the “can’t do that” theory, became an obsession and I spent weeks glued to the Internet looking for that exact place. Most special needs camps, I discovered, cater to kids with autism or with physical handicaps, putting Savannah in a weird gray area, Moreover, few medical professionals have ever seen her condition – “Can’t answer that question, mom. There’s no medical data to support that” is their customary response – and there’s nothing to distinguish its seriousness with the exception of the caduceus on her right wrist.
It was on a cold winter night, after months of looking at kids in wheelchairs and leg braces, I stumbled upon The Hole In The Wall Gang, a camp Paul Newman started for kids coping with serious illness. “Finally!” I said.
I was excited until I downloaded the application. All I could think is “Ah, gawd, here we go again.” Special needs children come wrapped in a lifetime of forms. I often feel like Lucy in the famous episode where she accepts a job in the candy factory and starts eating the chocolates in an attempt to keep up. If I could pop a few forms in my mouth, I would.
Many times while making copies of medical records and faxing I considered aborting the process. I was worried that after all my work my “grey area” child might be rejected. The special needs world, after all, is filled with one-upmanship and as one mother pointed out years ago “she doesn’t have cancer,” but images of last summer kept me plowing forward. By August the only kids you see in the New York City parks are hot bored ones whose poor families don’t own a summer home or relatives in the ‘burbs. That was us.
By February, I had completed all the applications and sent the Hole In The Wall a mountain of forms – via fax, snail mail and e-mail, just to be triple sure – and started the waiting game. Savannah and I would spend many winter nights curled up on the couch checking out the camp’s web site. It was beautiful. Newman had built a movie set-worthy camp, complete with a lake, mountains and a treehouse bigger than most New York apartments.
“Look, it says a serious fun camp,” Savannah would point out. “And all the kids wear medical alert bracelets!”
“Remember, you might not get accepted,” I said, trying to manage the situation. The last few years have been filled with a lot of heartache with the premature deaths of both grandparents and a father-like ex who after making lofty promises of trips to Great Adventure disappeared into Witness Protection Program. I didn’t want any more disappointment.
It wasn’t until late May I’d open the mailbox and see the envelope with the graphic of the kid dressed like a bandit. Savannah tried several times to grab it from my hands, and I had to shoo her away. I held my breath as I quickly skimmed the letter and before turning and delivering the words we’ve been waiting five months to hear: “You’re been accepted. You’re going to camp!”
By the whoops and hollers, one would have thought at last a pan-pit kid had been admitted to Stanford. Still, it didn’t immediately, register, so I re-read the letter before repeating louder: “You’re going to camp!”
Then, after a little victory dance at the mailbox, I did what I didn’t to do that hot July day at the hospital. I cried.