We live in a world where our stories are often shaped by our circumstances, by the labels thrust upon us, and the expectations that society subtly (and sometimes not-so-subtly) layers on our shoulders. For someone like me, diagnosed with a condition like Spinal Muscular Atrophy (SMA), the tale is frequently one of battles—against one’s body, against perceptions, against time itself.
As a child, the world, which should seem vast and full of infinite possibilities, often felt limited by the walls of hospitals, the hum of medical machines, and the ever-present knowledge of a reduced life expectancy. But then, amidst the storm, a ray of hope shines: Make-A-Wish. This organization, renowned for granting the wishes of children with life-threatening illnesses, offers a brief respite from the daily struggles, an opportunity to embrace a fleeting moment of joy, an occasion to be just a child again.
As that child, the allure of Disney, a land of magic and fantasy, was irresistibly enticing to me. And so, I wished for it. It’s the epitome of childhood dreams—the beloved characters, the enchanting rides, the fireworks that paint the sky. Make-A-Wish gave me a chance to escape reality, and I grabbed it with both hands.
The experience was magical, or so I like to believe. Inevitably, as I grew older, as medical advancements and sheer willpower enabled me to defy the odds and transition from childhood into adolescence and then adulthood, a certain realization dawned on me. That trip to Disney, while assuredly wonderful, has become a blur. In all candor, I don’t actually remember the trip. I remember the stories that my family tells me about it, but I have zero recollection of my time at “The Happiest Place on Earth.” The magic, once so tangible, has faded. And I can’t help but think: “What if I had waited? What experiences could I have unlocked in my 20s or even 30s, given that I have been fortunate enough to see those years?”
It’s an intriguing juxtaposition. On one hand, there’s immense gratitude for organizations like Make-A-Wish that offer hope in bleak situations. They create memories that, for many, are invaluable. Yet, on the other hand, I feel a pang of regret, a wish for something more substantial, more lasting. The Disney trip, taken at an age when memories are still forming and often fleeting, sometimes feels like an opportunity lost. Could it have been an adventure in a different part of the world? A chance to experience something thrilling and utterly invigorating? A way to leave an indelible mark or make a significant difference?
Of course, this is all in hindsight. The very essence of Make-A-Wish is to grant immediate joy to children who might not have the luxury of waiting. It operates on the premise of now, understanding that for many, tomorrow isn’t promised. And there’s undeniable value in that. But my journey with SMA has forced me to ponder an intriguing question: what happens when tomorrow does come? When life, with all its unexpected twists, gifts you more time than you ever imagined?
As someone born in the pre-Internet era, with my form of SMA, living into my 30s and beyond is not simply defying odds; it’s a rebellion against every prognosis, every sympathetic look, every well-meaning yet limiting belief. It’s a testament to the human spirit, to the advancements in medical technology, and to the sheer tenacity of refusing to be boxed in by my condition.
And yet, the irony remains. That gift of time also brings with it the weight of reflection. It offers the chance to look back on choices made, on wishes granted, and wonder about the possibilities that might have been. It’s a mixed bag of gratitude and yearning, a cocktail of appreciation for what was and a longing for what could have been.
So, what’s the takeaway from this unique journey? Perhaps it’s about embracing the present while always keeping an eye on the horizon. It’s about being grateful for the gifts, like that trip to Disney, while also allowing oneself the grace to yearn, to dream bigger, to wish for more. It’s about understanding that life, especially for those with conditions like SMA, is a dance of moments—some fleeting, some lasting, but all valuable.
As the medical realities of those with complex disabilities evolves, so does the understanding of their needs and desires. With more individuals defying the odds and living into their adult years, a gap emerges in the current framework of support and celebration. The way to fill that gap is with an organization akin to Make-A-Wish but tailored specifically for those who’ve grown beyond their childhood years. What if we could imagine an organization designed for those continuing to face challenges but also accumulating dreams and aspirations that evolve with age? We could create a place where the wishes of adults, who have battled and moved past the threshold of young adulthood, can be realized.
Such an organization wouldn’t just be about granting wishes, but recognizing resilience, celebrating milestones, and acknowledging the unique journey of these individuals. It’s a nod to the idea that dreams don’t have an age limit and that milestones can be reached and celebrated at any stage of life. It would serve as a testament to the indomitable spirit of those who keep pushing boundaries, reminding the world that every day is a gift and every dream is valid, no matter the age or circumstance.
In the end, whether it’s the magical world of Disney at a young age or the thrill of an adventure in later years, the essence lies in living life to the fullest, seizing the day, and cherishing every memory made along the way. Because life, with all its unpredictability, is too precious a gift to be taken for granted.
I’d like to make this blog a bit more interactive, so I’ve created a Google Form that lets anyone send in questions or topics they would like me to explore. You can even submit anonymously, if you wish.
Tell me what you want me to write about. Nothing is off-limits, but I don’t guarantee I will create a post based on your input.