Happy Mother’s Day! I hope you saw that I left you the last chocolate in the bowl by the door – that is, if dad didn’t get to it first.
I just wanted to write you this letter and thank you for all that you have done for me over the years. I know that I thank you regularly for the little things you do each day, such as cooking dinner, doing my laundry, making my bed, and emailing me funny comic strips you come across. But, on this Mother’s Day, I want to focus on the big picture, and thank you for the impact you have had in helping me navigate my life with a muscle disease.
As the mother of a son with Miyoshi Myopathy, you have been not just a mother to me, but a caregiver, an advocate, a helper, and above all, a friend. You are my biggest cheerleader, always telling others about my accomplishments and the writing that I do. Although I am a bit shy and hesitant to be the center of attention, I appreciate your enthusiasm in being my champion.
Like all MDA mothers who wear many hats in caring for their child with muscular dystrophy, you have had to learn on the fly how to handle numerous responsibilities. There is no manual, no how-to guide that explains how to perfectly juggle the physical and emotional demands of the job. It is a rollercoaster that cannot be described or understood by any means other than experiencing it firsthand. But, as an MDA mom, you are a special breed. Through trial and error, you have learned the terminology, adjusted your care accordingly to my level of strength, and asked the tough questions to the many doctors I’ve seen on this odyssey. Your love, however, has been constant, unwavering, and unconditional.
I know it has been heartbreaking for you to watch me go from being a fully able 21-year-old to someone who, at age 30, can no longer live independently. One of the saddest days of my life was when I stumbled in our house, clung vainly to the kitchen counter for support, and crumpled to the ground in exhaustion. Although you tried to help, you couldn’t prevent it from happening. I remember cracking a joke and watching you sit down in a chair and start shaking. At first I thought I had made you laugh, but soon realized that you were crying. At that moment, I realized how much this disease was affecting you, and how this truly was a family battle, not just my own.
But, like everything else with this disease, we got through it as a family. Not me alone, but you, me, dad and Jen. Although I am the one with the physical symptoms, we have all been changed by it emotionally. Hopes and dreams have been shattered, but in their place are new hopes and dreams that cannot be taken away by muscle weakness.
I know that you feel guilty for giving me this disease, as if it was something you could have prevented in some way. Don’t feel guilty! We are all dealt a hand in life, and although, yeah, I wish I didn’t have this disease, as you always remind me, there is always someone who has it worse in life.
Above all, I want to thank you for believing in me. Many times I have found myself down, struggling to come to grips with my circumstances. You acknowledge my fears and frustrations, but you always tell me that something good is going to come out of my struggle. When I look into my future and see nothing but uncertainty and darkness, you provide the light. Maybe this is just you being “mom”, but I want you to know that I appreciate it, even if sometimes I tell you that you are being overly-optimistic.
Your encouragement and support (along with dad) have enabled me to do more than I ever thought possible. When I learned the prognosis of my disease, I thought my life was for all intents and purposes, over. But you never gave up on me. And as a result, here I am today. In the last few years I have gone back to get my MBA, overcome my fear of public speaking, and have written more than ever before. Writing had always been my passion, but I never thought I was any good at it. You convinced me otherwise, and I’ve been writing ever since.
Mom, I would not be where I am at today without you. There are many challenges ahead in my future – our future – but it’s a journey that I wouldn’t want to be on with any other set of parents, and, fine, any other older sister (Happy Mother’s Day Jen!).
So, here’s to more laughs, fewer tears, and – let’s face it – a few more family whodunits about who took the last piece of candy out of the bowl.
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