Days That End in ‘Why’: A Letter to My Parents

Dear Mom and Dad,

In the wake of FDA approval of Zolgensma, jubilant feelings soar like a kite, beyond the boundaries of wonderful to the highest altitude of hope.

Mom, we recently had lunch together and chatted about new SMA treatments and their incredible impact on SMA families. You mentioned how you wished there had been a treatment for me when I was a kid. I sensed sadness in your eyes. Dad, I’ve gathered your thoughts on the topic, too.

Trying to fall asleep last night, I thought about writing a letter to you both in a column. The bedroom was bathed in soft moonlight as I lay with five pillows supporting my body. Wide awake, my eyes darted around the room. I stared at the obscure silhouettes of the closet door, the vague outline of light fixtures. I began to think about my childhood and how I’d shape this letter.

My dim vision blurred with mounting tears along my eyelids. I felt the damp heat of sorrow streaming down my cheeks, along the edges of the mask that helps my nightly breathing. Other than thinking about how I needed to stop this crying nonsense and avoid waking Andy up to dry off my sopping-wet mask, here’s what encompassed my mind:

Mom, I thought about how you fought for what was best for me throughout my childhood. You chiseled away at the icy medical denials of mammoth insurance companies. You sat through drawn-out IEP meetings and educated the school system about how to meet my needs, even when you faced great opposition from administrators and teachers who didn’t understand. You tirelessly advocated for me and listened to my perspective.

When physicians coldly told you I wouldn’t live beyond my teenage years, you waved them along amid your tearfulness and sought supportive, knowledgeable healthcare providers. You never gave up. Sometimes, people labeled you as “the squeaky-wheel special needs parent,” and I remember you countering it by saying, “The squeaky wheel gets the oil.” They probably thought you flew around on a broomstick at night, but you didn’t care what they thought because they weren’t in your shoes. 

Dad, I owe all of my Super Nintendo skills to you, and I’d like to think our Mario Kart races helped forge my superb wheelchair-driving abilities. Whenever I was on the Pediatrics Unit, you’d reserve a television cart with Nintendo and wheel it into my hospital room, or I’d watch movies with you by my hospital bedside. You were a stoic rock who taught me to persevere through the worst bouts of pain, the agony of chagrin.

If I ventured to a place of asking “Why me?” you didn’t allow me to sing the blues for long. You showed me how to take life one day at a time, valuing the transformative power of humor and attitude. You viewed me as any other kid and treated me as such. You grounded me when I acted out, and you taught me the world wasn’t going to stop revolving or go easy on me because I have SMA. You always nudged me in the direction of independence, even if only a short distance would be gained.

As parents, you had to balance my sister’s needs along with mine. You navigated tough and maddening issues, and I want you to know your efforts aren’t lost on me. You valiantly traveled the road shared by many other SMA parents.

But I also want you to know that my life has been beautiful, and SMA is part of that. I don’t discount my triumphs over it. There was no treatment when I was a kid, and it’s been a hell of a ride. It’s made me who I am today. I can’t picture my life any differently because this is the only life I’ve ever known. I’ll never wish away a journey that has taught me strength and shown me the meaning of empowerment, compassion, and love.

Living with SMA has ignited my fiery spirit. The reason I cried when thinking about this letter is because I have heart. That’s from you. Heart and spirit intertwined, I’ve risen to the occasion and channeled my strengths — cupping my hands over my heart, capturing the words that flow from it, and extending my arms to the world.

People with disabilities often feel forgotten within our society, and you knew that I’d grow up to face such harshness within many different arenas. You prepared me to be a warrior against ignorance, unfairness, apathy, and ableism — things for which there’s still no cure.

I can’t imagine the breadth of emotion and worry you felt for me while I was growing up, but I hope you’ve seen beauty in everything that I’m capable of. 

All of my love and gratitude to you both.

***

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