My son, Matt, has always been fiercely independent. So it didn’t surprise me when he started talking about going away to college, but I admit to hoping he would have a change of heart. A hope that was pretty quickly dashed. When Matt began filling out the applications, there was only one school in the Dallas/Fort Worth area among his choices.
I really pulled for that one. “Thirty minutes door-to-door, Matt,” I would tell him. He would have none of it. Much as I wanted him to, he didn’t want to choose his school based on convenience for his mom.
Matt has spinal muscular atrophy (SMA), a form of muscular dystrophy. Doctors told us he wouldn’t survive his second birthday. In most cases of muscular dystrophy, it’s the muscles that are damaged. In Matt’s case, it’s the nerves. The cells in the anterior horn of his spinal cord don’t send a signal out to the muscles, and the muscles atrophy. He has rods along both sides of his spine to hold him up. He has to have breathing treatments during the day. He breathes with a ventilator at night, and has to be turned over four to five times. He’s been in a wheelchair since he was 18 months old, but he never let being in a wheelchair define him. I always tell Matt he’s the least-disabled disabled person I’ve ever met.
My husband, Mike, and I both grew up in the Midwest, but we never traveled home for Christmases because of how compromised Matt’s respiratory system is. We were afraid of the cold, afraid of getting stuck while we were traveling. So when Matt chose Notre Dame—a school located in a geographic area known for frigid winter temperatures and epic blizzards—that kind of took my breath away.
Fearful possibilities assailed me: Would he get stuck in the snow? Would the cold weather affect his health? He drives his wheelchair with a joystick. Would his hands be too cold to drive?
There were other worries as well. Chief among them: Would we find people who would be dependable and kind?
That was one concern I was able to put to rest early on. When Matt was accepted, I made a trip to South Bend to look for a condo nearby where I could stay. I had asked some of the Notre Dame families in our area if I could contact their sons to have them show me the dorms for men. I needed to take measurements for medical equipment. The boys brought me into their dorms, measured rooms for me. They even measured the bathroom stall for the shower chair. They brought their friends in to meet me. Where else would college kids take the time to reassure a nervous mom? The message I came away with was, “Send your son. We’ve got his back.”
Still, the first night he was in his dorm room was gut-wrenching for me. He’d been to muscular dystrophy camp, so it wasn’t the first time he’d been away. But this was different. He was leaving my care and would come back as an independent adult. It was never going to be the same again. It’s hard to let your child go and to trust other people to care. You just hope that your child finds his way in a safe and supportive environment. In that sense, I think my fears were typical for any mom.
That night, I couldn’t sleep. I paced and cried. I had all kinds of horrible scenarios running through my mind. My husband kept reassuring me that this was what I’d worked for all these years, for Matt to be independent. But it did not feel good.
When I finally saw him weeks later, I could see he was doing fine without me. And that was a whole other set of feelings to deal with: “He doesn’t need me like he used to. He’s found his own way.”
By the way, I had made the assumption that Matt would be housed in a regular dorm room. But one day when we were in town, we got a call from the University architect’s office. They wanted to show us something they were putting the finishing touches on.
I walked into the dorm room in O’Neill Hall and was flabbergasted. They had remodeled an entire quad so Matt could have roommates. They gave Matt one room for himself, and completely renovated one bathroom so he could move around it in his wheelchair. They closed off a hallway, built shelves for his machines and medicines, and created a space for his attendant. Matt had the privacy and space he needed, but he had the connection to his roommates, and he could be on the dorm floor in the midst of it all. The kids called the suite their “tripod.” The thoughtfulness was overwhelming. I cried (again).
One of the most upsetting experiences in Matt’s first months at Notre Dame actually led to one of the most powerful lessons for me. The adult aides hired from an outside agency who were supposed to provide Matt’s care weren’t dependable. It was terrible. They just didn’t show up. No call. No email. He would call us upset and frustrated. I could hear it in his voice. It was when he needed care the most—and it wasn’t there. I would be ready to hop in my car. Time after time, though, one of the boys would jump in and say, “I’ve got this.”
Finally, Matt convinced us that the people he could depend on the most were his roommates and friends in O’Neill. He sent out an email to ask for volunteers to help with his care, and 11 people showed up that night, which was incredible. It took awhile to get everything in place to make the transition, but once we were in fully with the students, it was the end of calls. If they had a test or weren’t feeling well, they would work it out amongst themselves.
All during his time at Notre Dame, Matt found support. He learned to ask for help—and there were plenty of people willing to lend a hand. That was good for me to learn, too. As much as I wanted to believe I was the only one who could care for him, I truly wasn’t.
It really changed our relationship. As a mom, I learned to trust him. He had control of his environment. At one point, he got sick. He asked a friend to go with him to the health-care center, where he got a prescription. His friends stepped up to be there for him. I didn’t even find out about the episode until after he was well again. (I didn’t find out a lot of things until after they happened—just like most parents of a college student.)
That was huge. I realized that even when he wasn’t well—one of my scariest scenarios—he had enough support to take care of himself.
When he graduated in 2012, we laughed: “Matt, you left nothing on the table. You did it all.” He went to away games. He went to Vegas for his 21st birthday. He tried different classes and clubs and leadership experiences. He went to all the sporting events and parties and everything that is normal for college kids. He left no stone unturned.
I think this is the story of one person’s perseverance, of a group of friends who stood by, of a generation that gets what it means to care for each other and accept each other as we are. And of a large institution that got it right. Notre Dame showed you can still care about individuals as they are, and not just one, but every one. I’m so grateful that he went to a place that took ownership of who he was, and to a community that loved him. Period.
Matt is now employed as a financial analyst in Dallas with Sabre Holdings, a global travel-technology company. DeAnn has returned to being a full-time resident of Texas, where she enjoys being part of a weekly Bible study at her home church and serving as president of her neighborhood homeowners association.
Matt Swinton is a remarkable young man whose strength and determination, no doubt drawn from the strength and love of his parents, guided him to Notre Dame.
Notre Dame Magazine recently published an article about Matt; Notre Dame Multimedia recently produced a video.
We are pleased to share both.