My Sons’ Birthdays Stir Up My Emotions
January is birthday month at our house.
We have four birthdays in January. That’s almost half of our family celebrating their arrivals on the planet in the same month. Our newest addition, our 3-week-old daughter Callie, was born on Jan. 9, joining Rowen, who turned 13 on Jan. 21; Charlie, who turned 11 on Jan. 17; and Mom, who will turn an undisclosed age 10 days later. Rowen and Charlie both have Duchenne muscular dystrophy (DMD), along with their brother Max.
My husband jokes that he needs an extra job the last couple of months of the year to pay for Christmas and all the January birthdays. But we have embraced the month and love to celebrate all the birthdays. Four cakes, four parties, four favorite meals, and fun birthday decorations adorning the house all month long. What’s not to love?
The down side of birthdays
I’m so thankful we have grown to love birthdays as much as we do. At the beginning of our journey with Duchenne, birthdays were confusing and scary. Although I love my boys and was so happy to celebrate them, I also felt an overwhelming sense of loss. Celebrating another year of their lives felt like observing another year of disease progression, and in my bleakest thoughts, another year closer to the fatal end the disease promises.
For me, accepting the diagnosis of Duchenne muscular dystrophy for three children included processing every part of life that was changing. I quickly recognized those changes in our lives, like immediately needing an accessible house and van and durable medical equipment, specialty physicians, and individualized education programs.
The things that I could control, like making physical changes to our environment and choosing doctors, made me feel better because I had power over them in a situation that otherwise made me feel out of control.
In the first years after diagnosis, if I wasn’t grieving what the disease was taking from me, I was throwing myself into doing all the things I could control: setting up a circle of support, advocating and raising awareness about DMD, and finding terrific doctors and a fantastic community of others living similar versions of our life, through the Parent Project Muscular Dystrophy.
It was not always such a good approach because rather than dealing with the grief and big emotions I was feeling, I pushed them aside and kept myself so busy so that I wouldn’t have to process my feelings. Those big emotions, especially the fear, escaped during holidays, birthdays, and the end of summer vacation — anything that signaled the end of something or the beginning of something else.
Celebrating and thriving
Time doesn’t stop. As much as I sometimes try to hold the hands of time steady, they keep ticking. The boys were diagnosed a decade ago, and time has allowed me to process grief and learn to celebrate without looking through a Duchenne-fogged lens.
My sons also helped me get to where celebrating them became even more meaningful because I followed their lead. It’s been a blessing that our boys — even amid loss brought on by progression, anxiety, or any other hard thing they’ve faced because of DMD — always look forward to the future. They love their birthdays.
They have dreams after high school, including independent living, jobs, and families. They know it might look different for them than it may for others. They know that those things might be challenging to attain. But they haven’t stopped looking forward to the next phases of their lives, so neither will I. And if I can be there to support them as they work toward their future, then there’s more reason to celebrate.
My children have taught me that the next thing is OK, even if it is hard. These boys of ours are resilient and amazing, and their perseverance has given me so much to celebrate. I feel so blessed to be their mom and to witness their lives up close and personal.
It also helped when I realized that we don’t know what the future holds. Research and treatments are ever-changing. We are making advances through clinical trials and other treatment options.
Celebrating birthdays now comes as easy and natural as breathing. The boys growing older no longer scares me. That is not to say that I don’t grieve the functional losses they experience — I do. I feel those losses profoundly. But in following their lead, I know that a loss today might make tomorrow look different. But it doesn’t take away their tomorrows, which I can and do celebrate.
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.