There isn’t a single person on the planet I enjoy making laugh more than my brother, Romann. Just a second of me saying or doing something stupid, and he’s cracking up for hours—sometimes even days.
For instance, I made him a nice breakfast one morning, and we were trying to take a picture together. I leaned over and completely fell out of my chair.
Right on the floor!
I’m telling you, he would not stop laughing about that incident for about two days straight.
I love making him laugh and just bringing him joy and creating those sorts of memories, even if it hurts sometimes—literally.
It’s important to enjoy and appreciate those types of moments for as long as we can — because we don’t know what tomorrow brings.
Romann was about three years old when he was diagnosed with Duchenne muscular dystrophy (DMD).
My parents noticed he was a little clumsy at times—nothing too out of the ordinary but definitely enough to get their attention. DMD basically shuts down your muscle functions over time.
At first, the disease progressed fairly slowly and you wouldn’t notice too much of a difference. But, eventually, Romann couldn’t even walk anymore.
In time, he was confined to a motorized wheelchair after losing function in both of his arms and legs. He needs help eating and dressing—you know, all of the really humble stuff people take for granted.
But as his sister, the part that hits the hardest is the fact that this disease shortens his lifespan as well.
As you can imagine, it’s very difficult to just talk about it.
Not only does it hurt to watch his steady decline, we all know what the outcome of this untreatable disease is.
I still remember my parents sitting me down and talking me through all of this as a child. I mean, as a parent, how do you even do that? This must have been so hard for them. They’ve gone through things no parent should ever have to go through.
As challenging as these circumstances are, they also really help put life into perspective, you know? One of the many things I learned over the years is to truly appreciate every moment I have with my brother and keep that mentality in other aspects of my life as well—my friendships, family, boyfriend, teachers, and even the random people I run into on the street.
I really want to make people I come in touch with feel loved and valued. It’s something that means a lot to me.
Finding the right balance between spending time with my family and prioritizing my own needs and wants has always been a difficult internal conversation.
When I signed with Presbyterian College, for example, I was beyond excited for my chance to play volleyball in college. But once leaving home became more of a reality, it was really tough.
Part of me felt guilty for leaving Romann. I didn’t want to leave him behind. Or make him feel like playing volleyball and going to college was more important than our relationship.
Family plays a massive role in my life. And it always will, no doubt. But it took me some time to realize this wasn’t an ‘either-or’ kind of deal.
I had to stand firm in what I wanted and allow myself to be excited about something that’s actually about me. It wasn’t easy, but in the end, I definitely think this was the right decision.
Overall speaking, some days are harder than others, honestly. I miss home a lot, and there are times when I’ll just sit here and cry. It’s a very real thing for me, and I’m not hiding my feelings.
But it’s also important to realize that this experience is a part of my life, and it’s part of my growth as well. Both of my parents have been amazing in helping me walk through that process and ultimately grow as a person.
And volleyball has helped me in that effort as well by giving me an outlet to stay busy and not think as much. Just being surrounded by great teammates and coaches is a growing experience in and of itself.
But frankly, there isn’t a day that goes by that I don’t think about Romann. And nothing will ever change that.
One of the biggest challenges is the fact that I’ve watched my brother struggle. As his sister, honestly, it just sucks.
He’s very conscious that he was able to walk at one point, for example. So, there are moments when he gets frustrated and sad about it. That’s when it gets really hard, you know? Just having to see someone you love deal with something like that is heartbreaking.
But as I mentioned earlier, the hardest part is being aware of the prognosis. In a way, you try to stay in the present and enjoy what time you have with him as opposed to running off and thinking about what’s going to happen in the future.
It’s something I’ve had to put into practice, or otherwise, I’d be up and lying in my bed all day and not coming out to talk to anybody.
And that’s the reality of it.
Life is hard and not promised to be easy, but we all have the choice to pick ourselves up and use it as an opportunity to do something with it. I’m not perfect by any stretch of the imagination, but there’s always an opportunity for growth.
There’s always the option of making the best of your life, even in the darkest and most challenging of times.
One of the ways I plan on doing that is by pursuing a career as a pediatric physician assistant.
I have grown so much from this experience, and I’m working every day to turn whatever parts I can into a positive.
Since the brain is also a muscle, Romann deals with mental disabilities as well, but he’s still completely able to hold a conversation. He’s spunky, funny, and a cutie—don’t get me wrong. But like it would be for any of us, there are also challenges and behavioral issues. All of that has really sparked my love for psychology and biology, too.
Ever since I could wrap my head around the situation, it was challenging, no doubt. But, throughout the journey, we all found gratitude and joy in all of this as well.
Most importantly, we developed a heart to help.
The perfect example is probably the non-profit organization that my parents started. Restore Place helps other parents with special needs kids get a little rest and recuperation. The organization more or less pays for the mom and dad to get away and recharge their batteries for a weekend—a spa, horseback riding, shopping, and even the ability to sleep for eight hours straight.
If you want to learn more about the cause or how you can support it, you can check out our website here.
As for me, the biggest way I can help is by telling my story.
My own growth in processing what I’m going through is vocalizing it and reminding myself there’s a bigger purpose for everything. I’ve found that whatever I’m going through might suck for the rest of my life, but I can sleep at night knowing it’s in God’s hands.
I’m simply using this opportunity to shine my light and tell my story.
Because of my experiences, the good and the bad, I am who I am today.
I love you, Romann!