Children With Special Needs

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Loving Large

Loving Large

A Mother's Rare Disease Memoir
edition:Paperback
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Excerpt

Prologue

I was on my phone in my favourite writing spot in a bookstore, where four green leather wingbacks clustered near a fake fireplace. I think what I heard was the doctor asking how he could help. Maybe he said he got my message or he’d heard about my son from whoever found it first. It was his caring tone that cracked me open. Before, I would have mustered a giggle-worthy comeback to make him comfortable, some sarcastic quip to break the tension between strangers, but the last vestiges of my Funny Girl veneer were gone. I’d dismissed her from my cast of characters back in the pediatrician’s office. The part of me that could react to crisis went over the cliff’s edge as I stared at a pile of my son’s school pictures and wondered how the hell I’d missed the signs. By the time the doctor asked the next question, I was managing only mumbles to convey I didn’t know how he could help, but I sure as hell needed it.

“Tell me what you know so far,” Dr. Graham said.

I blurted out a list of the medical facts I’d gleaned up to that point from doctors with specialties I would previously (and contentedly) not have known existed. Then I rhymed off blood levels and tumour measurements, and when I got to the part about my son’s pain, I stood and paced because I thought movement might quell the tears that were rising. I sat back down, just on the edge of the chair at first, but the tenor of the conversation made me feel wobbly, so I slid to the floor, and a few minutes later, I was on my knees. I dissolved into sobs for the first time since I’d heard the word gigantism from my son’s pediatrician days before. My tears dropped onto the orange carpet, where the little orbs lost their borders, pooling into one almost-red wet spot.

I’d plunged into the Google-verse on the hunt for someone who was expert enough to get my son conclusively diagnosed and tell me what his treatment options were. There had to be an expert somewhere. I didn’t know how many doctors it would take to get the information I needed or how far around the globe I’d need to reach for them. Google found a press release announcing an award to a specialist at a California hospital. I clicked the “more info” link and then the “contact us” button.

The endocrinologist on the phone worked with the celebrated doctor, and somehow, he had heard about me already, less than twelve hours after I put some sentences into the online form at some public relations firm in Berkeley, California. I didn’t know enough yet to realize that this meant I had a very sick child.

I would never have been so brazen had it been about my health; I’m not the queue-jumping type. I’m more the wait-my-turn kind, the one who lets the customer with just one item slip ahead to the cashier. Being this unabashed for my kids was still foreign to me. I’d never left a middle-of-the-night harried message on the pediatrician’s answering service begging for the first appointment. In fact, I hadn’t taken either of my boys to the doctor’s office for so much as a fever, infection, or minor wound in years.

“You’re doing all the right things,” Dr. Graham said. Then, quiet. I wasn’t going to get the relief I’d desperately wanted. I’d counted on him to tell me about next steps, but he hadn’t dropped the details for a cure or told me that hundreds of other kids before Aaron had followed some treatment plan and were fine. I was still clinging to the hope that somebody somewhere (could it please be him?) might hear our story and tell me that this had all been one big mistake. Instead, I was sobbing, wiping my nose, snuffling like an ice-cream-dropping toddler.

“All the right things? You mean we’ve done everything there is to do?” My breathing quickened again. I needed to know what to do. Someone needed to tell me what to do. There’s still more to do, isn’t there?

“Even doing all the right things, it still may not be enough.”

What did he just say? I couldn’t have heard him right. Not enough for what?

I drew in my breath. Panic choked out any calm I was starting to manage. A thousand fears came rushing in.

“All the right things aren’t getting us to an expert, Dr. Graham,” I told him. “Not the tumour expert, the disease expert, or the brain surgeon we need. All the right things are just leading to more questions, more tests, more prescriptions.”

“You’ll need all those doctors and more,” he replied. I heard his practised calm. He wasn’t going to tell me how to find what Aaron needed. I was on my own.

“It’s not like I can just call them up.” I had a mental picture of me, uber-polite and bubbly on the phone to some receptionist: “Oh, hi.… Can I make an appointment this afternoon with your world-renowned brain surgeon–boss to check out the golf ball–sized tumour in my son’s head? Yes, sure, I can hold.” My voice was cracking. I was sobbing again, wiping my nose on my coat sleeve. Pleading tones seeped out of me. “It doesn’t work that way. At least not where I live. It takes a long time to be seen here and I don’t even know who we need to see.”

I’m pretty sure that doctors have no idea how difficult it is for patients to get access to them. Specialists, in particular, are oblivious to the long waits, the mystery of how to move up the queue, and helplessness of seeing a condition deteriorate before getting to the doctor. Even best case, it would take months to get Aaron a first consult. I must have said this out loud.

“Knowing what you’ve told me … in my estimation …” — he hesitated or stuttered maybe on this point — “Your son doesn’t have that kind of time.” My mouth fell open. I stared, stopped twiddling the pen between my thumb and forefinger.

No back-pedalling followed. He didn’t say, “I haven’t examined Aaron of course, so I can’t be sure.…” And Dr. Graham certainly had every right to not give me an opinion at all. He hadn’t even seen a photograph or test result. He was taking my word for it. And he’d called me. My kid really was in trouble.

“Fewer than a hundred or maybe two hundred children in the world have this condition,” he told me, adding that not many more than that were recorded in the last century. There were eight billion people on the globe. How could anything truly be that rare anymore? What would that percentage even be and out how many decimals? Why my kid? Why here? Why now? The doctor wasn’t done. “Unfortunately, rare as it is, we do understand the progression of the symptoms.” His voice had gone flat.

I might have been crouching, could have been in the fetal position under a display table. I saw nothing. I felt pressure in the side of my head, as if my eardrum was struggling to get closer to the phone. I could hear the doctor breathing. Was this difficult for him too? Didn’t he do this kind of thing every day? Did he know he was calling to destroy my life? I heard something else, something deeper than sound, larger than noise, rising from a sinister place where dark truths about children hide until frailty and hopelessness allow them to emerge. First a rumbling and then a ticking, uneven and random, settling at last into a rhythm, the cadence of a countdown. Tick. Tick. Tick. It had been running down for months, maybe years, before an eagle-eyed technician found my son’s tumour on a CT scan.

How much time is left?

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Your Child's Voice

Your Child's Voice

A Caregiver's Guide to Advocating for Kids with Special Needs, Disabilities, or Others Who May Fall through the Cracks
edition:Paperback
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Le double diagnostic

Le double diagnostic

Guide d'information
edition:eBook
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The Four Walls of My Freedom

The Four Walls of My Freedom

Lessons I've Learned from a Life of Caregiving
edition:Paperback
also available: Paperback Hardcover eBook
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Dual Diagnosis

Dual Diagnosis

An Information Guide
edition:eBook
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Somewhere Over the Sea

Somewhere Over the Sea

A Father's Letter to His Autistic Son
by Halfdan Freihow
translated by Robert Ferguson
foreword by Ian Brown
edition:Paperback
also available: eBook
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