Are there curbs or cutouts? How many stairs are there? Is there an elevator? Is there space for multiple power chairs? How big is the bathroom? How far is the parking lot from the entrance? What do all of these concerns have in common? Unfortunately, they’re things I never…
Like many, we have a tradition of buying a real Christmas tree every year during the weekend after Thanksgiving. It just doesn’t feel like Christmas until we have visited our local tree farm to pick out the perfect one. I love everything about that day — the damp pine…
While I love Christmas, I’m a Thanksgiving girl, too. Decorating for Christmas is one of my favorite things ever. I usually go shopping for vintage Christmas decorations and get at least one tree up before Thanksgiving. But I won’t get serious until we put the last leftovers from our turkey…
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.
Bleep. Bleep. Fire. Fire. Bleep. Bleep. It was 3 a.m., and my eyes flashed open as I bolted out of bed. The fire alarm was going off. Before I had left the bedroom, my 8-year-old daughter, Mary, was flying up the stairs from her basement bedroom, frantic and in tears.
As a caregiver to my three sons living with Duchenne muscular dystrophy (DMD), I’ve had a few bad days lately. I’ve generally felt worn out and a little sad, and the parties around here have been pity parties. I try to be positive and remain in a place of…
My family enjoys attending sports events and theater productions. There aren’t many things we like more than a nice meal out followed by a game or a play. However, seating for families with wheelchair users is rarely ideal. I can only speak about my family’s experiences.
School and Duchenne muscular dystrophy (DMD) don’t always go hand in hand. But of course, they can — and when they do, it’s beautiful. But even then, I doubt it’s come about without an extraordinary amount of work from the parents, the school district, or both. This school year,…
The days are long, but the years are short. I’ve often heard that sentiment from parents whose children seem to grow up too fast. I’ve had several moments myself over the years of parenting my seven children. I had one of those moments yesterday when my oldest son, Max, who…
Duchenne muscular dystrophy (DMD) is a progressive disease, but for me, the mother of three sons with DMD, things have been more nuanced. The grief I experience from being associated with a rare, chronic disease has been anticipatory, erratic, and constantly cyclical. It did not start small and grow…
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