To a parent, the years always seem too short
Creating a rich life of adventure for children, no matter their health status
I read a quote the other day on Facebook: “When you are raising babies, you feel how long the days are. When raising teens, you feel with every single bone in your body how short the years are.”
Days later, I still carry those words with me as a mom of seven children: Lexi, 23; Max, 19; Chance, 17; Rowen, 16; Charlie, 15; Mary, 10; and Callie, 3. There are 20 years between my oldest and youngest children. I think the quote is an apt description of my experience with them. There are times when I look at my 3-year-old and distinctly remember my 23-year-old at the same age. It seems like weeks, not years, have passed.
Being the mom of a large family has blessed me in many ways. I get to experience both early and later years all at the same time. Although my oldest daughter is married and living her own adult life, my youngest is little, not quite old enough for preschool, and keeps us in the business of life with young children.
Because I know how fast the years go, I treasure my time with my little one. I always make time for snuggles, bedtime stories, and everything you experience only when your child is young. I also enjoy watching my adult child navigate married life, her job, her home, and the world.
Filling up the years
However, three of my children, Max, Rowen, and Charlie, are living with Duchenne muscular dystrophy (DMD), a diagnosis that comes with a life expectancy. Although I consider myself highly blessed to be their mom, their journey with DMD adds heartache to the line, “When raising teens, you feel with every single bone in your body how short the years are.”
When Max, Rowen, and Charlie were diagnosed with Duchenne in 2010, the doctor said they’d lose their battle with Duchenne in their early 20s. But the landscape for Duchenne is ever-changing. New therapies have been approved, and more are on their way. I hope the life expectancy for every person living with Duchenne, including my sons, is soon double or triple that older prediction.
But until that happens, my sons are inching their ways toward their 20s, and the years seem too short, especially the years ahead. Any number put on the time I get to be earthside with my children will never be large enough. The depth of my heartache is complicated because of how fast their lives seem to have passed so far.
I’ve known for over 15 years that my sons’ lives could be shortened because of the progression of Duchenne. We’ve tried to always live in the present moment, abstaining from borrowing tomorrow’s trouble.
When I learned the boys had Duchenne, my heart broke. We homeschooled them for a year because I wanted to try to hold back the hands of time.
We made some great memories. One of my favorites was driving to Florida just before Rowen lost his ability to walk so that he could walk in the ocean. I’m happy that all three boys played Little League baseball and jumped on trampolines.
We were always in favor of living and trying the things we knew they couldn’t do as they aged with Duchenne. I’m proud of us for living life even as they lost their upper arm strength and ability to walk.
In everything we’ve learned on our journey with Duchenne, we never learned to say no to seemingly impossible things. We took them adaptive skiing in the mountains, even after the disease had progressed. I have no intention of stopping our adventures, either!
I pray that we’re many years away from the end of their lives here on earth, but knowing that we’ve shared adventures and consumed lots of life makes me smile. The years are short, whether I’m looking back or ahead. But I’ve loved every minute of raising my babies, DMD or not.
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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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