Hi all! My name is Leslie Gafford, and I live in Mobile, AL.
I am myself able-bodied, or relatively speaking anyway at age 57, but I lost my husband to ALS on 5/5/2021 after an almost 3 year battle to reach a diagnosis and then live with the beast. His diagnosis came on 5/14/2019, so he lived less than two years from diagnosis. While he was living with ALS, I wanted desperately to plan one final family vacation for us and our three kids. They were 18, 20, and 22 when John died, and due to their age differences, we had not been able to take a whole family vacation during “normal” times, because my daughter was in college and studying abroad during the summers, so my younger two didn’t have the same holidays and open options as her. Basically, she didn’t vacation with us as a whole family from 2016 on. I knew what we were facing, and myself and the kids discussed the inevitable regularly, no hiding anything, no protecting anyone, but ALL agreed that it would be great to get John out of the house and back into nature, even if it was going to be the last time. That was spring of 2020, when I attempted to find an accessible vacation location or offering. I only had about a year of experience with fighting the LACK of accessibility, but I could look at houses and condos and other advertised “accessible” options, and I could pretty quickly spot the flaws, the skinny doors, the one-two steps to get in, the lack of open space for a caregiver to assist…you know the list is endless. I was stressed out, tired, sad, and then pretty quickly MAD that this seemed to be the norm. I’d already torn my rotator cuff pulling John out of our house onto the patio, with just a tiny threshold lip, so I knew the possibilities for trouble and danger. I basically gave up in June of 2020, as John suddenly progressed from walker and sometimes wheelchair needs to only wheelchair and hospital bed in the “playroom” of our decidedly unaccessible tri-level home. I gave up on OUR vacation plans and hopes, but I immediately felt the tug of an idea to change the narrative, albeit after John’s passing. The writing was on the wall for us, but I wanted desperately to give other patients and families like us the opportunity to stay in a distinctly modified and dedicated accessible home, with everything geared toward the patient’s needs, safety, the caregiver’s need for downtime and “comfort” in how accessible and safe a location would be. I knew the pitfalls, the stressors, the dangers, from living with them and watching my husband and my kids fight daily to do no more harm to John. He spent the final 7 months of his life in a hospital bed in our playroom, because our home was so inappropriately designed for accessibility. YES, I considered moving, remodeling…but with becoming a widow at age 56 looking likely, those moves might have created more financial hardship for myself and my kids once we lost John. I decided to wait it out and just give my love and support to John and our family.
BUT…13 days after John died, I was reminded of the basis work I had put in, the business plan loosely written up, the mission of my project, and the fact that I knew in my heart it would have made a difference had we been able to make some new memories, some POSITIVE memories, before losing John. I thought of all of the things he’d been left out of since his diagnosis and progression, simply because to have included him might have brought injury and further progression. He could no longer watch his two boys learning to grill and smoke things out on the patio, something he was amazing at, and as their talents grew, I agonized over only being able to offer him food for a meal, rather than having him out there supervising and giving “support” and encouragement to them. Birthday parties and holidays started taking place at our home almost exclusively, but he was generally left out of the majority of the gathering, and that sucked. My daughter had graduated Summa cum laude in December of 2019 and was willing to not pursue an international job so that she could assist with her Dad, because she believed she would be the one with the time and ability to help - between Covid, his progression, and the lack of dignity many times afforded patients living with ALS, her whole plan was derailed; she couldn’t lift him by herself, nor could she do many other things for him, which I’m so sure many of you know. Covid landed our youngest’s high school graduation in a local football stadium that was technically accessible, but for me, a big leap to get him in and out, so John had to watch from home on the local schools website. I absolutely began to HATE how hard it was to include John in things.
I came up with a plan, spotted the perfect home in a quiet and peaceful waterfront setting in southeastern Alabama, and John-boy’s Place and Windchime Wishes Limited were born, May 18, 2021. I resurrected my previous writings from June of 2020, started the process of purchasing the home, created the nonprofit and began making my dream come true to help patients and families living with disabilities find a simple, modified, dedicated accessible vacation home where the goal is not much more than making big memories doing little things. Down time, inclusivity, safety, serenity…all located in one place and geared toward supporting the patient, which then trickles down to the caregiver and the family. I’m still working on it, and with the help of the Gleason Foundation, I hope to have my first family stay there for a free week in October of this year. I am actively looking to share what I have learned, and what I have created, with the community of patients and familial caregivers who are now facing what we faced then. It’s a simple concept, but it means the world to me. I’m not here to claim victory over accessibility or ALS or anything else, but I do want to get the word out and maybe help someone in our area. I also want to be able to share outside of the Alabama, Florida, Mississippi area…and maybe expand my reach in helping those that need it. ALS is where our story came from, but I am open to discussing any other diseases or conditions that create those extreme mobility challenges and therefore limit people’s abilities to enjoy life and nature. Thank you for listening