I wanted my oldest son with DMD to go to college more than he did
In my mind, going to college meant Max was beating Duchenne
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As the summer flies by, my thoughts turn to going back to school — reluctantly.
As a mother of many, the end of summer is nothing new. I have seven children with my husband, Jason: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie have Duchenne muscular dystrophy (DMD).
This year feels a little different, however. As we prepare for new schedules and the school-year routine, a major change is coming for Max, who has attended a local four-year college since graduating from high school two years ago.
He will not return to college in the fall. I wanted Max to go to college more than he did, and I pushed for him to go, but it wasn’t fair to put my wishes for him in front of his own.
Good intentions
In my mind, Max going to college and living on campus meant he was beating Duchenne, and I let that false narrative shape how I helped him navigate life after high school.
But Max beats Duchenne every single day, and it has nothing to do with college. He beats Duchenne when he wakes up, when he fights for others living with DMD by participating in clinical trials, and when he allows me to share our story so that it might help others.
Max had never been positive about college. He also didn’t know what he would do if it weren’t for college. He has long struggled with anxiety, and I hoped he would find his people in a new school and thrive after using what he had learned in years of counseling.
His first semester was great. The school was excited to have him on campus, and I thought we were off to a great start. I didn’t ask if he was going to class, though. I just assumed he was.
Without his dad or me talking him through the things that caused his anxiety, Max caved in on himself. He would stay in his dorm, skipping meals and class. By the time I realized what was going on, his first year of college was over.
We talked about it, planned for him to return, and increased his therapy with the hope that it would give him the tools to cope with anxiety on campus. I wanted Max to have a fulfilling life and believed that going to college was the way to make that happen.
Adjusting perspectives
But his second year didn’t go any better. He didn’t go to his classes. His grades continued to drop. We argued. Max didn’t want to go back to college, and I couldn’t think of a reason for him to go back. Max’s decision not to return to school was a weight lifted from my shoulders.
I had always worried that if he didn’t go to college, he would stay in his bedroom and play video games all day. But that’s what he was doing on campus. At least at home he would eat and interact with his family. I came to realize that Max was in a healthier place — mentally and physically — at home.
In hindsight, I’m sorry I pushed so hard for him to go. I’m sorry we didn’t have a better plan to help him manage his anxiety. I’m sorry it became such a source of stress for all of us. I know now that I didn’t need to try to fill Max’s time with four years of classes and a degree he didn’t really want in order for him to live a full life. College doesn’t make him more than what he already is and always will be — a beloved son, brother, and friend. Max brings immense joy and entertainment to those who love him and whose love he returns.
We will figure out what’s next. There is no rush. I am satisfied that he is happy, and I am sorry that I might have been part of a difficult chapter in his life.
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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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