Life is so busy that a week of medical appointments sounds relaxing
I recently told my husband that it feels like we are living two lives!
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My life is always in motion, and we are in a busy season as my family prepares to move into a new house, one that is being modified for accessibility.
I share my life with my husband, Jason, and our seven children: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie have Duchenne muscular dystrophy (DMD).
The new house has double the square footage, so not only does our large family fit, but Max, Rowen, and Charlie have space to move freely in their power wheelchairs. We are also installing an elevator and modifying a bathroom to make it accessible for them.
And because our sons are young men and need and deserve their own space, the basement will be their dedicated area. They will have their own bathroom, an area for drinks and snacks, and space to work on school, Legos, etc. We are also having a contractor install a basement door with a ramp that the boys could use in the event of an emergency or if the elevator isn’t working.
Not ‘another thing!’
I recently told my husband that it feels like we are living two lives! We follow our normal chaotic schedule during the day, while evenings and weekends are full of cleaning, packing, and trying.
Jason works all day, helps coach softball, and fills in wherever I need him. I stay home during the day, taking care of the kids and getting everyone to appointments, physical therapy, preschool, middle school, high school, college classes, dance classes, and sports practices. On top of that, we’re both sneaking in minutes to talk to contractors, make decisions for the new house, or order equipment we will need for the boys.
We are taking care of both houses at once, overseeing the modifications while also caring for our family. Our sons are teenagers, but we can’t just leave them at home while we take care of the other house. They must come with us, or we have to drive back and forth to help them with whatever they need.
Last week, Max had a tooth pulled, Rowen had physical therapy, I picked up or dropped off the kids at school four times throughout the day, and I went over to the new house to take a measurement. I was exhausted, but as we near a move-in date, more of my days seem just as full.
There are nights when I look at Jason before we put our sons to bed and say, “I don’t think I can do another thing!”
No interruptions
I have never experienced a busier schedule as a mother to my large family. In fact, as I prepared to leave for a clinical trial visit and a neuromuscular clinic visit with Max, Rowen, and Charlie earlier this week, I looked forward to a more relaxed schedule of clinic appointments.
While it is definitely challenging to travel alone with three Duchenne patients to clinic appointments, I actually viewed it as a respite for me during our busy moving and house modifications process. I appreciated and enjoyed it. I got to stay in one place for several hours without coming and going. We went out to eat, so no cooking for me. I didn’t make any decisions about the new house. Instead, we went to the movies — feet up, a heated seat, and buttery popcorn with free refills.
I am very thankful for the new home, despite all the decisions and extra work, but I had hit my limit as a caregiver and mom, and being at the clinic somehow became less stressful.
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.
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