I’m feeling all the emotions as my oldest son reaches a big milestone
As Max's high school graduation approaches, I find myself on the verge of tears
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I have three sons with Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. When Max was young, he met all of his developmental milestones late. He didn’t sit up until he was 11 months old, crawl until after his first birthday, or walk until he was 17 months old. I imagined every milestone would come painstakingly slow.
I’m happy to report I was wrong. Max will graduate high school in mere weeks and attend college on a theater scholarship next fall. He’s getting there right on time with his peers. They may have walked sooner, but they’ll all graduate high school together.
Last Monday, Max and I went to his college of choice to start planning with the team that works with students with special needs. I have yet to learn about sending a child with Duchenne to college, but I know enough about the condition to recognize there’s no perfect plan. We’ll do as we always do and find a way.
My emotions are running high. For many reasons, I continue to find myself on the verge of tears, but three reasons are recurring.
Imagining graduation day
In five short weeks, Max will graduate high school. Thinking about him in his cap and gown and the sound of his name being called during the ceremony makes me realize I’ll need waterproof mascara.
The tears flow as I think about how much he’s overcome in the past four years. His high school journey started with debilitating anxiety, continued with a broken leg his junior year that took away the last of his ambulation, and is finishing with him receiving an “overcomer” award for overcoming adversity with determination. He didn’t even know he was nominated. I’m so proud of what he’s accomplished.
First student with a power chair
When Max and I met with student services on Monday, we realized he’d be the first full-time student to attend this college in a power wheelchair. Of course, there have been students with mobility issues, and power chair users have visited the campus for different events, but he’ll be the first in the full-time ranks.
Although college staff are working on it, not everything on campus will be perfect when he arrives. Most places we go as a family aren’t made for power chair users, but we always find a way to make it work. This time will be no different.
What makes me tear up is that Max is paving the way for future students. The campus will be better by the time he leaves it. I’m so proud of him for, yet again, breaking down barriers and showing the world what he’s capable of. He’s so much more than his diagnosis.
Those who came before us
It doesn’t get past me that my sons have the opportunities available to them because earlier generations of boys and young men with Duchenne made it possible, in so many ways. They participated in the first clinical trials and underwent the first muscle biopsies. Their parents organized the first advocacy efforts and contributed to changes in law and healthcare that benefited the Duchenne community.
Other young men with Duchenne have attended and graduated from college, and they and their parents have graciously shared their experiences and all they’ve learned so that it’ll be easier for those who follow.
I’m leaking from my eyes right now. The generation that gave blood, sweat, and tears paved the way for this generation to make even more progress. I don’t know where my sons’ journeys will end, but I promise we’ll follow the lead of those who came before us and make life better for those who come next.
I knew Max’s senior year would be emotional, but I underestimated the depth of my feelings. I’m proud, sad, happy, thankful, joyful, scared, and more. I’m feeling it all. But mostly, I’m celebrating this monumental milestone with Max.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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Comments
Anand Kumar sahoo
My son Priyansh is now 9yrs old .He suffer DMD. He able to walk but falling regularly. Please helm him
abram medina
hey there regarding your 9 year old son how long has he had it?