I am Amy’s mom. Until twelve years ago, I watched from the sidelines as Amy lived her life jumping over the many obstacles that were set in front of her year after year – obstacles that sat between her and good health. I’m not talking about good health like most people would define it. For Amy, it was defined as ”good enough” health – good enough to get out of the hospital, good enough to go out to dinner or good enough to just get off the couch. Now, this could be a very sad tale, but Amy’s life could never have been described as woeful. It was one of hope and miracles – words tossed around casually on greeting cards, but made so much more meaningful when you had a chance to witness their constant presence in Amy’s life firsthand. When Amy was diagnosed, it would have been so easy for CF to rob her of her childhood as her life suddenly revolved around doctors’ appointments, respiratory treatments and endless talk about her sputum. But, somehow, Amy was never bitter. She was just glad to be out of the hospital – sometimes just glad to be alive. She figured out really early one of life’s most persistent lessons that many people never learn – that life cannot be taken for granted, that it just needs to be lived.
I am so, so grateful that I got to be her mom. I do wish life had not been so difficult for her and I wish that I could have controlled all the wreckage that was going on inside her body, but I also believe that we all come in and out of each other’s lives to learn the lessons that life has to offer. When I was a new parent, I always envisioned that I would be the one teaching Amy and her brother the important things that they should know. In the end, Amy taught me far more about life than I was ever able to teach her. When she was in the middle of fighting for her life, I rarely questioned why all of these challenges kept coming her way, but I would often consider what lessons were to be learned from the extreme conditions. I truly think that Amy kept digging in her heels and jumped from one challenge to another because she was teaching us about the limitless powers of the far-too-often untapped strength that dwells inside all of us. As we go through our lives and lament about bad hair days, we don’t often get the opportunity to test that potential. I remember absolutely shrinking in the shadow of the strength that she would display day after day.
I know --I’m biased. I have always thought that my children lit up the room simply by being in it. But everybody who knew her, from her many friends to the hospital personnel who worked with her, tell me that Amy was different. The reason Amy inspired all of us is because she loved the life she had been given – a life plagued by chronic illness and the certainty of an early departure. She accepted that which she could not change and embraced it. Amy found fun and humor in places others would refuse to look. She taught us about courage and hope and grace in the gentle ways that she handled her life. She had an illness, a very serious, life-threatening illness, but she never lived her life sick.
For twelve years, we have used the CFF's Great Strides walk as a way to honor Amy's sweet memory, while furthering the efforts of the CFF. We were undoubtedly able to have more time with Amy because of the CFF's support for the development of new treatments and medications. By participating in this incredible event, we are able to give back to the organization that continues to support those who live with CF today.
We hope that you are able to support Team Amy even though our walk is virtual this year. We will miss our chance to collectively reflect on the lasting stamp that this beautiful young woman left on all of our lives, but are hopeful that you can still support the efforts of the CFF by joining Team Amy for the Great Strides 2021 virtual walk or by making a donation orto this cause that is so near and dear to our hearts. Thank you so much!