Feeling Thankful for Those Who Make Our Journey Easier
Equipment help makes Duchenne muscular dystrophy management easier
I have three sons with Duchenne muscular dystrophy (DMD). We had little need for durable medical equipment when they were young, but their needs have changed as they’ve aged and their disease has progressed. We have hospital beds, power wheelchairs, a stair lift, and a ceiling lift system.
These equipment needs may seem common knowledge to those living with or caring for individuals with DMD. But I’m writing this column not to talk about that equipment, but out of gratitude for someone in our life who’s made their DMD diagnoses a little easier. There’s a process to get the equipment they need, and we’ve been fortunate to have a professional who’s made it so easy for us over the years and has become a good friend.
Last Thursday, my oldest son, Max, received a new bed — a hospital bed. It wasn’t something he wanted, but because of DMD progression, he needs it to help him get in and out of bed more independently for a little longer. But probably more important to him, he figured out quickly that it’s a comfortable place to play video games!
Of course, our good friend delivered and installed the bed. When it came, I was at an appointment with one of the kids. (Don’t forget I have seven!) My husband, Jason, met him for me. When I got home, they were chatting in Max’s bedroom, and my husband said, “Betty’s not going to be happy.”
I thought something must’ve been broken or didn’t fit. I didn’t expect Jason to tell me our friend was retiring. My husband was right; I wasn’t happy. I was sad.
As our friend prepared to leave, he entered the kitchen, where I was loading the dishwasher. First, I needed to sign for the bed, and then we talked. He promised to return one more time before he retires at the end of the year.
I’ll share with you what I told him.
“Managing the boys’ health is a lot. There are so many pieces to their care. You made getting them the equipment they need so easy. We will miss you.”
Maybe I saw the beginning of a tear, and he thanked me. We hugged, and he was off to serve another family.
I’ve thought about that little exchange a couple of times. My husband and I talked about it as well. Our friend made that part of our life so easy. We’d text him that we got a new prescription and email him a copy and medical notes, and boom. He took care of everything; if he needed measurements, he’d meet the boys at home or school, and a month or so later, the new equipment was ready.
It might be the only thing in our Duchenne journey that’s easy. It scares me a little that it might become a bigger job, but that only makes me thankful for the years we worked with this man.
He may not understand his impact on our family. I’ve talked with local families with children needing durable medical equipment, and he was the same with them. As we enter the holiday season, it seems appropriate to call him a gift because he’s been that to many people.
Parents never expect to have a child who might need a wheelchair, a hospital, or a Hoyer lift. They don’t write about how to get those things for your child in parenting books. At one point, all of us who needed to get those things were doing it for the first time. Our friend took us by the hand and showed us how — me and other local families. He also made suggestions based on his experiences and ensured our boys had the best.
I remember meeting him for the first time at our elementary school when Max was in the fourth grade and Rowen was in kindergarten. We got power-assist wheelchairs for both of them. He made it so fun, and the boys took to him immediately. When the chairs came in, he remembered what baseball teams the boys liked and brought them team T-shirts with their names on the back.
He’s been special to our boys and a friend to my husband and me. It’s been a powerful experience to have someone who cares deeply about our corner. So this is my thank you to him and all of the providers, advocates, and people who make up the jigsaw puzzle of DMD management and make it easier.
Note: Muscular Dystrophy News 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.
Betty, Thank you for sharing this wonderful story.! Lee