Getting kid with cancer into a good school no easy feat

Posted 9/4/15

by Amanda Parry

It’s been years since I’ve sat outside the principal’s office, but the dread and unease are instantly familiar. For the 100th time that day I smooth the hair from …

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Getting kid with cancer into a good school no easy feat

Posted

by Amanda Parry

It’s been years since I’ve sat outside the principal’s office, but the dread and unease are instantly familiar. For the 100th time that day I smooth the hair from Charlie’s face and paw at her bottom, checking that her diaper is still dry.

My daughter and I are waiting to meet the principal of the most popular magnet school in town, a public Montessori with an excellent reputation.

Four-year-old Charlie is supposed to start kindergarten in the fall, but our local elementary school has a serious bullying problem. Convinced her developmental delays will make her a target, I want her to come here, where class sizes are small and students possess a commendable level of emotional maturity. Because it is a public school, she would also receive help from occupational and speech therapists, as well as special education teachers.

Unfortunately, I’m not the only parent to have picked up on how great this place is. Every year hundreds apply for the small number of kindergarten spaces available.

So far, I have done everything short of performing immoral acts to bypass the lottery that will surely lead to a spot way down on the wait list. (Not for lack of trying, let me assure you. The decision makers in this district are real prudes.)

The fact that she has cancer has swayed no one; we are still subject to the whims of the lottery. On one hand, I get it; they can’t give us special treatment. On the other hand, I wonder why the hell not.

I have scored a meeting with the principal, hoping she will find some magic back door to let us through. Little Charlie, however, has no idea how important the next 20 minutes are. I want nothing more than to grab her and bark: “Listen, girlie, you better sparkle in there. Unless you want to be picking your teeth up off the playground for the next seven years, turn on the charm and shine. Shine, I tell you!”

Fortunately, I still have a little restraint.

Nothing has been left to chance. I chose her most fetching dress — red with Scottie dogs — and have tied a comically large bow in her hair, just in case the principal likes that sort of thing. None of this was easy. Little Miss insists on picking her own clothes each morning, and I’m supposed to encourage this ridiculousness. She invariably walks out the front door looking like she’s on drugs.

But last night I tiptoed into her room while she slept and removed every article of clothing from her dresser except for said dress and its matching bow. When she emerged clutching them this morning, somewhat confused, I pretended to be surprised.

She has been off chemotherapy for a while and looks radiantly healthy. This worries me.

“Kids with cancer are supposed to look — sick,” I lamented to my mother a few days earlier. “Maybe I should get an oxygen tank she can pull behind her.”

“No,” my mother said, equally as nervous. “You don’t want them to think she’ll be too much trouble.”

Right, I think, no trouble. That means no squatting in the corner and filling your diaper while laughing maniacally, darling girl, which seems to be your favorite pastime these days.

Sources in the special needs community have told me the principal has a soft spot for children like ours, and the year before she admitted a little boy with Down syndrome named Paul. Charlie’s middle name is Pauline. I’m hoping to work this into the conversation somehow.

The door opens and Ms. Principal emerges, beckoning us in.

She directs me to a chair and Charlie to a box of blocks on the floor. “Build,” I urge her in my mind. “Build like you’ve never built before.”

The principal and I discuss Charlie’s history: how she was diagnosed with neuroblastoma at 18 months and underwent multiple surgeries and rounds of chemotherapy. How the tumors are in a holding pattern right now, neither growing nor shrinking. How the doctors are confident that the cancer will slowly die off over the next few years, as can sometimes happen with this type of cancer.

I don’t tell her about my unhealthy need to push every potential obstacle from this child’s path. How I still feel guilt because I couldn’t stop the agony of chemotherapy. How I want nothing more than to come with Charlie to kindergarten every day and hold her hand when she gets scared and hug her when she laughs and mightily pound the tar out of any half-pint who even looks at her funny.

Because I’m guessing the principal would, you know, frown on that.

Charlie wanders over and hugs my knees.

“Mama,” she says, eyeing the principal, “why talk to doctor?”

“She thinks I’m a doctor,” the principal says.

YES!!! I scream inside.

“Of course,” I say, putting on my sad voice. “She has seen so many in her short life, she just assumes this is a consultation.”

The principal shakes her head in regret.

Charlie laughs at something and I’m praying it’s not a full diaper.

“Isn’t she precious,” the principal says, and leans over to look in Charlie’s eyes. “You are a sweet girl; aren’t you?”

Charlie smiles. If I could toss her a fish, I would.

“Charlie,” she says. “Charlie — what’s her middle name?”

She asked! She asked! She asked!

“Pauline,” I reply evenly.

Her eyes light up.

“We have the sweetest boy here by the name of Paul,” she says. “He also has special needs.”

I feign surprise. The delight is genuine.

“Unfortunately,” she says, turning back to me, “it’s not up to me whether she gets in.”

Damn. Damn. Damn.

“You’ll need to apply through the lottery like everyone else.”

I hold back barf.

“However,” she leans forward and lowers her voice, “if she doesn’t make it that way, apply for a medical transfer. I will approve it.”

I stare at her. She nods and smiles.

Looking down at my little girl, I feel like collapsing.

In a gesture no more sincere but infinitely less calculated than any other I have made that day, I start to cry.

Amanda Parry, 38, grew up in Chestnut Hill and attended Germantown Friends School from kindergarten through 12th grade. She started the blog UnexceptionalParenting.com to let off steam and draw some attention to autism and pediatric cancer charities. She lives in North Carolina. Her parents, George, a former federal prosecutor, and Natalie, still live in Chestnut Hill.

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