Three weeks ago, Amy died. She was 42. I don't know Amy and have never met her. I do know one very important thing about her though. Amy died from complications of Ehlers-Danlos Syndrome, a progressive, degenerative condition. The same condition my boy, Jonathan, has. When I saw the notice of Amy's passing, my heart sank. While no one knows for sure what the ultimate result of Jonathan's journey with EDS will be, we do know one thing. As a genetic disease, there is no cure. No surgery, no treatment, no pill that will make him well. To dwell on this is devastating. My heart ached for Amy's family. However, as I continued to read, my heart began to fill with something...something like hope. This is how Amy's family described her:
She attended Smith College and it was during her freshman year that she was first confined to a wheelchair. It was the impetus for her lifelong interest and passion to improve accessibility for those with special needs. To further this interest, she left Smith after her freshman year to volunteer her time with the Disability Rights Advocates, in Berkeley CA, an agency in the forefront during the early days of the ADA. She returned to Smith, where she served on the Northampton MA Zoning Board and addressed architectural standards for accessibility in public spaces. She graduated Smith in 1995 with a dual major in music and anthropology.
As part of her senior thesis program Amy spent a year at Union College in southeast Kentucky. Her focus was Appalachian Studies, Culture and Music. She enriched that experience by joining weekly Bluegrass music gatherings with regional musicians, singing and playing the guitar. When she returned to Louisville in 1995 she and and her husband brought together bluegrass musicians from all corners of the state for jam sessions at their home in the Highlands.
In 1996 she and her husband started a consulting firm that prospered until her condition worsened and the business demands were too great for her failing health. During that time she volunteered at the School for the Blind and recorded technical books that would aid those with sight impairment. These books required advanced skill in Information Technology and the ability to transform mathematical formulas, charts and graphs so that they could be understood by the visually impaired. Amy was a former member of the Louisville Downtown Rotary where she donated many hours of her IT skills. She served on the Board of Directors of The de Paul School. A primary contribution as a board member was to completely revise and rewrite the technology infrastructure for the school and empower teachers and students by bringing technology to the classroom.
She was a Official Judge at the Kentucky State Fair for Knitting and textiles. Amy wrote grants, created business plans, and offered her IT acumen to create networks for non-profit organizations locally and across Kentucky.
Her health may have limited her ability to navigate the world as others might, but she had the unique ability to bring the world to her bedside. Her interests were great: Photography, drawing, metal work, cuisines of the world, knitting, textiles, spirituality and natural medicinal arts, and always music. Although she was confined to her bed for most of the last seven years Amy remained focused on her life interests, which always were growing in scope and number.
She was the best kind of friend. Even while her physical abilities were shrinking, she continued to expand the world of others by teaching and sharing her talents and she made it seem effortless. The regimen of her health care played havoc with her physical body but she remained beautiful in her spirit to the end; charismatic, courageous, funny, generous and loving. Through all of these challenging years, it was maintaining her independence that was important to her core happiness.
As a mother who loves her child, I have spent countless hours worrying about his future. "Can't" and "If" seem to circle in my brain almost constantly. I want the best life possible for him but honestly, sometimes it's hard to dream of anything other than pain, medications, doctors, tests, and FEAR. So while I was initially shocked by this obituary, by the time I finished reading it, I found that I had a sense of hope. There's nothing we cannot do with God's help and a determined spirit.
2 comments:
You, your son, and your family remain in my prayers.
I have been jumping around reading snatches of your blog posts, even your older ones; and, you are a good writer. I had to look up Ehlers-Danlos Syndrome (pretty sure I just got the spelling wrong), and I was amazed at the variety of symptoms. It kind of reminds me of Fibromyalgia and ME/CFS, yet no many people are said to die from FM and CFS. But a lot of those have some of the same symptoms, minus the joint and skin flexibility.
I have a granddaughter that is missing a strand of DNA on a chromosome. I don't know if there is a name for the problem -- I just know it is rare. She has the muscle weakness issue, has to be fed by a tube, cannot talk or walk unaided. And there are other physical issues. But, she is so special and a joy. She smiles, she laughs, she cries, and she grunts her likes and dislikes. She loves music, and she has worked hard at her physical therapy for as long as she can remember. She, her parents, her siblings are amazing!
You and your family are in my prayers. I am so thankful you have kept your blogs online to read.
Your friend in Christ,
Deborah
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