As a child, I remember family vacations, trips to the zoo, and adventures in the woods. I recall the thrill of experiencing new places and the comfort of being with my parents as I learned about the world and all its beauty. Most of all, I remember a contentment in knowing we were living these moments together as a family. When I think of those times now, as a mother to my own children, I worry these memories I have will differ from the memories my children will form. I am a mother with multiple sclerosis (MS), and I can’t participate in every family activity. The truth is, my children will remember events without me, and while I’m relieved they can have these experiences with my husband, part of me is mourning the memories I’ll never be a part of.
In the summer of 1993 when I was ten years old, my family went on vacation to New England. I still reminisce about climbing the rocky beaches in Maine and crawling through caves in the mountains of New Hampshire. We were a family of four, and with every vacation, celebration, or family get together, a picture of the four of us was ingrained in my mind. I’m not sure how I’d remember these events had my mother not been present, but I do know that I recall the warmth of her being there with us. There is an unspoken comfort a mother can provide for her children merely through her presence. I hope that my boys feel this, even at times when I can’t be with them.
My husband is a hiker at heart. Since their father is an Appalachian Trail thru-hiker (yes, he hiked the entire trail over a five-month period!), I knew my boys would experience the great outdoors to a level beyond my capability. My husband and sons have been hiking together since my boys were old enough to walk. Hiking has become part of who they are and will always remain part of who they become. I’m grateful they can experience the accomplishment of climbing a mountain until they reach the peak, but I know this is an activity they’ll never do with me. No matter how many years into this disease I am, there will always be a sense of sadness when I miss watching them trek through winding trails and gaze, in awe, at the top of the mountain they just climbed. Seeing pictures afterwards is wonderful, but it will never replace being there by their side.
There are other times when I find my boys leaving home to embark on an adventure without me. Some days, I miss something as simple as going to the playground. The hardest part is knowing I wasn’t given a choice of whether I’d like to join. That choice was taken from me when MS erupted in my nervous system. Initially, it was hard for me to accept that the memories I had from my childhood would differ from the memories my children would form, but I realized there was a solution.
We found activities that fit my ability level. They continued hiking, of course, but I wanted to be able to share their love of the outdoors with them. I trained on my exercise bike and slowly increased my stamina and resistance level. Years of persistence, as well as being on the right MS treatment, paid off. We began biking, as a family of four, on flat bike paths. When I’m on my bike, I feel as though my body is disease free. The weakness I feel when walking vanishes as I pedal forward. With the wind in my face and my children beside me, we now form family memories they’ll never forget. And, thankfully, I am a part of these memories.
There will always be days I spend on the sidelines. My children will remember that I couldn’t be present for important milestones or adventures from time to time. But my hope is that the times I am present will stand happily and strongly in the forefront of their minds. Living with MS sometimes means missing wonderful days in my children’s lives, but it also means the times when I am present are that much more meaningful. And that makes it all worth it.
Lindsay Karp is a writer residing in the suburbs of Philadelphia with her husband and two sons. She writes about her long diagnostic journey and life with multiple sclerosis (MS) as well as parenting and other aspects of her life. She has recently entered the world of patient advocacy to help others living with MS and those who remain undiagnosed, as she did for many years. Lindsay is an aspiring published children’s book author and is working on a memoir of her 13 year diagnostic journey. Follow Lindsay's publications on Twitter: @karplindsay
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