How will my children remember me?
Isn’t that a question every parent asks? We want to set the best example for our kids, leaving a legacy behind when we are gone. Often, this is one of the main reasons people choose to become parents in the first place. One of the first fears in the minds of parents who are diagnosed with MS is: “How will this disease affect my ability to parent?” Followed soon by, “Will my young children remember me when I was healthy?” MS often strikes in the prime of adulthood, when most people are finally successful in a career, finally married, or starting new families. This is the cruelest aspect of this illness, the theft of young optimism. We want our children to recall these years of health, vitality, energy and strength. We want them to remember vacations, playing ball, swimming, and dancing with us. We want them to remember us as young, beautiful adults who never failed them; however, illness interferes with that image, and creates an image of inability and dependence.
Mothers with MS face an incredible challenge, coping with an incurable illness while tending to the needs of little ones, putting the needs of others before their own. In my own family, I witnessed the strength and perseverance of two mothers, facing incredible odds, refusing to give up no matter how difficult life got. MS was no match for these incredible women I am referring to, my grandmother Bette, and her daughter Susan, who happens to be my own mother. My grandmother was diagnosed with MS in the 1950s, and she had 7 children at the time. As a child of 5 or 6, I have vivid memories of visiting the home of my grandparents. We spent many holidays there, the home where my mother and her 6 siblings grew up. My grandfather Stan was the breadwinner, and my grandmother Bette struggled while trying to raise her children. She had been diagnosed with multiple sclerosis in the 1950s, when there were no treatments available. She was basically told to “get in bed and stay there.” Faith, love, and hope were the keys to their success, and my grandparents were a living example of heroism and true love despite devastating life circumstances.
When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them. When I question whether truly unconditional love exists, all I need to do is recall this life story and look at their pictures. Despite MS, my grandmother dedicated her life to her children, instilling love and values that remain to this day. You see, what matters at the end is our life story, our legacy; the story that will be told to future generations. Each of us is slowly writing a story that will be told someday, and it is incredibly important that we write one that we will feel proud of.
My mother was the oldest child in her family. Due to her mother’s progressive MS, at age 12, she took over a majority of the household chores and duties, becoming a surrogate mother for the 6 younger siblings in the home. My mother needed to grow up quickly, and assume the role of a parent at a very young age. At the time, there was simply no choice. Rather than playing, my mom would cook, clean, and help younger children bathe. She sacrificed her own needs for those of her family, and she never failed in her duty. The defining characteristic of a mother is the resolve to care for her children and protect them from harm, no matter what. My mother continued to care for others when I was born, and she was the most wonderful mother anyone could have asked for; I truly don’t know how I got so lucky! She provided me with a beautiful childhood, and gave me all any child could ever need, always putting my needs before her own.
My mother set a wonderful example for me, and I try to carry that on each day. I struggle with MS daily, but despite those struggles, I can still enjoy my children. I see their innocence, their desire to see the world as a beautiful place. My goal is to continue to allow them to see things as awe-inspiring, breathtaking and amazing for as many years as possible. I try to share openly and honestly with them, letting them see certain aspects of my disease, but shielding them from others. I am fortunate to have witnessed two incredible examples of motherhood in my own family, and I think of these incredible women every day. Each mother with MS is going above and beyond, coping with physical challenges while sacrificing daily for her children. Thank you to every one of the MS moms in the world; each of you is a true hero. Thank you, Grandma Bette, and I love you, Mom! Happy Mother’s Day to all…..