Imagine raising four kids. That’s a lot to handle on its own. Now picture that your kids, one by one, started to show symptoms of a mysterious disease that no one could name. How would you react?
These aren’t hypotheticals for me; they describe my life. As each of her children fell ill, my incredible and resilient mother Ann did not face this adversity with fear; she was courageous. As her children got weaker, she got stronger. There is nothing more a mother wants in the world than to make everything better for her children – but this was one thing she couldn’t do. Instead, she chose to shower us with unconditional love, encouragement and support.
Today, when I look in my mother’s eyes, I feel nothing but peace. We laugh, we talk and we hang out together. I truly believe that we are closer than most families will ever be. I cannot say that I am the best communicator or the best daughter in the world. But what I can say is that I have the best mother that anyone can ask for.
At 34, I am the youngest of four siblings living with GNE Myopathy, an adult onset progressive neuromuscular disease that causes severe muscle weakness in the body sparing the heart, lungs and one’s ability to swallow. For my family, the “adult onset” was earlier than most cases of GNE Myopathy: two of my siblings began having symptoms in their teens; my sister and I started to decline in our early 20s. We didn’t get a correct diagnosis until 2009 when I was 27, more than two decades after my eldest siblings first showed symptoms.
Although she has never expressed this to me, my mother undoubtedly has struggled with emotional stress about the effects of this hereditary disease. My siblings and I, however, have very clear feelings on these matters: we believe that our parents should not harbor any feelings of guilt, for, without them, we would not have any life at all. Our family got dealt a bad hand in the genetics lottery, but my parents had no way of knowing this before having children.
As we enter our 30s and 40s, my siblings and I know that our mother would still do anything for us. Although three of us have moved out and live with our significant others, we are never far apart. My mother’s life still revolves around her children, and she would not have it any other way. She holds all holiday gatherings and parties at her house so that it is accessible for all. She takes over when a personal care assistant calls out or doesn’t show up for a shift. She will take us to the doctor or dentist, babysit her four “grandpuppies,” or pick us up just to hang out together and have fun.
Though our neuromuscular diseases have taken many things from us, they’ve given us a relationship with our mother that is unparalleled. Never one to give up when times got tough, my mother taught us to stick together as a family and support each other through everything. Undoubtedly, she has one of the toughest jobs on earth. But we are the luckiest children. Mom, we love you!
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