Confronting the financial burdens of DMD with a heap of faith

I have seven children, and three of them are living with Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. If you’re a caregiver or a parent, I’m sure you’ll understand how tired I am. I won’t peruse my past columns, but I’m sure I’ve written about how worn out I get.

So when I tell you that I’ve returned to work full time as a special education teacher in elementary school, you’ll probably think I’m crazy!

I had worked full time before my sons were diagnosed with DMD. But once I realized they were living with a rare disease that had a life expectancy in the early 20s, I stopped. I wanted to spend every minute of their lives with them.

Recommended Reading

July 5, 2024 Columns by Betty Vertin

In the dance of who does what with Duchenne, it’s OK to ask for help

Life with Duchenne isn’t fair. Having children with DMD should be an immediate ticket out of financial woes. I wish it worked that way. Any parent of three sons with DMD should be exempt from life’s other problems. Unfortunately, that’s not how it works. We all face uncertainties that are part of life, including financial strain.

Life with Duchenne is expensive. Specialty pharmacies, durable medical equipment companies, and insurance providers don’t offer a three-for-one deal. And they don’t throw in accessible vehicles big enough to carry three wheelchairs for free.

So I needed to go back to work and was blessed to find a position that, for the most part, allows me to continue to be my sons’ primary caregiver. Except for a few professional development days, I’ll be home when my children are home.

My oldest son, Max, recently moved into a college dorm just a few blocks from our home. Although we currently provide care for him there, his personal care assistants (PCAs) will start soon.

With the help of PCAs for Max and a work schedule that allows me to be home when the kids are, it feels as good as it can for me to return to the professional world.

But honestly, I’m overwhelmed. I keep making lists of things I have to do before or after work. These are lists of things that kept me busy when I had eight free hours a day while my children were at school. Now I need to squeeze the tasks into fewer hours.

So how did I get to a point where I thought I could do it? It came down to faith.

Feeding the multitude

I’ve been praying for months that we’d get some relief from our financial situation. I didn’t want the answer to be that I had to do something else. But that’s the answer I got.

I was skeptical, thinking I didn’t have enough to give. I was convinced that I just couldn’t do it.

Then I went to Sunday Mass after receiving a job offer. The priest recounted the story of Jesus feeding 5,000 people with just five loaves of bread and two fish. And there were 12 baskets of leftovers.

The priest told the story in a way I’d never heard before. He said that some people in the crowd did have food — so there was more than just five loaves and two fish. But they were worried that if they gave others what they had, there wouldn’t be enough food left for their family for the rest of the journey.

The story felt like it was meant for me. I felt a stirring in my heart and thought, who am I to limit how much I can give? I believe in a God who knows better than me how much I can give. I believe he created me and all I have to offer comes through him. His love and generosity are never-ending.

I’ve decided to open my mind and heart to face this next challenge. I choose not to limit the love he has filled me with and to trust that he will provide everything that is necessary for me to return to work while still providing the care that my sons need.

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.