Accessible retreat in Alabama – John-boy’s Place

Windchime Wishes Limited and Windchime Resources are joining forces to provide 5-6 night stays at John-boy’s Place at reduced nightly rates and even one FREE stay per month for the sole purpose of helping patients and families get away from the daily routines and make new and positive memories.

Guestblog by Leslie, founder Windchime Wishes

In memory of John Porter Gafford who bravely fought ALS for over two years.  John-boy’s Place is a fully accessible and equipped home where all details are geared toward getting families together, making new memories, and easing caregiver concerns…with a view.

Accessible retreat in Alabama – This is the story of John-boy’s Place

I’ve often been asked where the name Windchime Wishes came from. It’s as simple as it is also complicated. First the simple part, I LOVE wind chimes!! LOVE. THEM. All sounds, all types, large, small… doesn’t matter.

Second, I wanted to create a program like the Make a Wish Foundation, but for grown-ups. A vacation can seem like such a simple thing, until you find yourself completely unable to take one. When you are facing a terminal illness, the opportunity to make new and positive memories can be so important to a person’s mental and physical health.

It is a dual mission for me, however, because I choose to use my platform to bring awareness to both ALS and the accessibility issues still faced by those living with disabilities.

Peace and serenity from wind chimes

Many, many times throughout John’s illness, keeping him at home on hospice, searching for competent and trustworthy caregivers, draining savings accounts, waking up all hours of the night and meeting my kids in the hallway or “playroom” where John spent his last year in that hospital bed, making plenty of bad and sad memories…

Many times if he was acting out against me, as patients often do with their main caregiver, I would just duck to the right at the top of the stairs and escape to my patio, where any slight breeze could make at least one of my chimes come to life, and thereby, me, as well. My hours spent on the patio just calmly listening to my wind chimes of all types and sizes were the most relaxing hours I was given, for well over a year.

Memories, wind chimes, harmony

They gave me peace and harmony and brought memories to mind of who gave them to me, or where we found them. For the spring months of 2020, John was able to be out there, too, and I think he enjoyed them, as well.

So to me, including “windchime” in the plan was a way to invoke those feelings of peace, harmony, happiness and good memories. However, I didn’t immediately think of that name; it came from my dear friend Tina who told me wind chimes had to be a part of the project, in whatever way it evolved. BOOM! As soon as I got that nudge, the names and their purposes just started blossoming.

The strange but prophetic part is that I wrote down ALL of the plans, the details, the parts and pieces of what would become Windchime Wishes Limited, Windchime Resources and Windchime Angels a full year before the names were decided upon.

Windchime Angel

I literally created these entities on 6/4/2020, 11 months before John passed away, as I lamented our not being able to make good, new memories and take that one last family vacation with our kids. I knew that I wanted one to be a nonprofit, and I knew that I wanted one to be a generator of funds to support the nonprofit, and lastly, I wanted the third arm of the trilogy to honor our true caregiver hero Angel, who was with us for the final year of John’s life and brought so much love and laughter and caring into our home.

To this date, I have not fully set up Windchime Angels, which would provide caregiver time at John-boy’s Place, but I have had Angel come up and work with some of my ALS families there for a few shifts.

Family time

My oldest child, my daughter Marylyn, was dedicated to her college studies and spent each summer abroad in one capacity or another, and since her college breaks and her brothers’ high school breaks were never a match, she got bumped into the young adult category… and we vacationed without her. When I realized that it had been almost 4 years since we had taken a true family vacation, I was even more intent on finding a way to do it and saddened when I could not make it happen.

As I now know, the importance of making time and space for loved ones and making as many memories as possible can never be overstated.

Not only were we going to suffer all the way to John’s last breath, then we were going to lose him and have to start rebuilding our lives and sweeping out the bad memories.

All I wished for was a chance to get John out of that one room, safely, and give him something peaceful and pleasant to look at. I longed for him to be able to just “be” near the grill or smoker as the boys worked their magic, and to maybe watch them doing something fun like ping pong, fishing, or throwing the football or frisbee.

I knew that he couldn’t really participate in those normal vacation activities, but if he could just be close enough to be able to FEEL the joy and join in the laughter, maybe everyone could feel a bit brighter, maybe have some joy…and some new memories of their Dad being a part of the little things, smiling, laughing, instructing and no doubt, correcting!

The importance of looking forward – goosebumps the size of Texas

I agonized over my inability to provide one last vacation for all of us. Everyone put their entire lives on HOLD. Literally, as we spent days and nights watching John lose function, hope and joy. Between COVID-19 constraints, ALS, and the ER visits and surgeries and nurses and hospice social workers and deliveries of medical supplies our lives were NOT ours to live as we chose.

There is so much to be said for the opportunity to look forward to something, and if you’ve never had an evil and dark “something” at the end of the timeline, you probably cannot understand the true agony of living a life like this.

Accessible retreat: The One

I created the idea of John-boy’s Place and Windchime Wishes Limited over a year before I actually had those names or a place that would bring their mission to life. When I finally found the home that would become John-boy’s Place, I got goosebumps the size of Texas and declared it as THE ONE.

It’s the only house I actually physically looked at, and it was perfect; large rooms, large bedrooms, the covered deck that wraps completely around the house, the expansive space under the house with smooth concrete and power on every other piling, plenty of open space and room for modifications on a house that was only 9 years old and very well built.

Even as this was only two weeks after John’s death, I knew the time and place were right to dive in and start making a difference, one ALS patient at a time. First, I had to let my family and friends know what I was doing, and that I’d been planning it for almost a year!

I thought there would be a lot of confusion and push-back, but I was wrong. It all made sense to everyone who had stuck with us for the entire journey. I managed to pool together some life insurance money and other funds to buy the home on 8/4/2021 and promptly began planning work days and projects to make it completely accessible. Used every idea that we had struggled with throughout John’s illness to make the changes and create a fully functional accessible home with no barriers to access.

I wanted inclusivity for all levels of illness or disability

I wanted it to be so simple that even an ALS patient could choose whether to be a part of the madness and laughter or to take a few quiet moments alone to watch the sunset and recharge quietly. Inclusivity for all levels of illness or disability.

My goal was for the patient to be the main focus of this vacation place, with everything tailored to him or her, which in turn offered a sense of respite and relief for the familial caregiver, as well.

To not have to worry about the safety of a building or the suitability of it, as well as having all medical equipment on site to prevent the need for traveling with a U-haul just to get away for a few days, would automatically take some of the stress off of caregivers.

Add to that the fact that it was located in a non-touristy, peaceful and beautiful location, on a quiet lake with deer in the mornings and at sundown, and I considered it to be the perfect accessible escape for anyone needing a break. I honestly believed that it was a one-of-a-kind creation, but I didn’t realize how right I was back in 2021.

Electric hospital bed, hoyerlift, and all of it

Through amazing donations from Spring Hill Medical Center in Mobile, the Gleason Foundation, the ALS Association of Alabama and other ALS patients and families, the home has an electric hospital bed, hoyer lift, alternating pressure pad mattress, fully reclining shower chair, threshold ramps and a monster Vertical Platform Lift.

As I was able to raise funds here and there, we had work days and widened key doorways, modified the master bath to be a fully zero-entry roll-in shower and installed extra wide concrete sidewalks to connect the downstairs area to the water’s edge. Once all of the modifications were done, I hosted my first ALS family in March of 2023.

It was a long and arduous journey getting to that point, but I would do it all over again.

Leslie

As the year closed out, I had brought 8 ALS patients and families to stay at John-boy’s Place and another 8 persons living with conditions such as TBI, Spina Bifida, Spinal Cord Injury and Hereditary Spastic Hemiplegia!

Team Gleason sent its first “Adventures” family in October of 2023, and I have another one on the schedule for June of 2024. Quite poignantly, for two of my ALS families, it actually was their final vacation before the disease stole their loved one away, and although it is a terrible goal to set, that is the essence of WHY I created Windchime Wishes Limited and John-boy’s Place.

Certified Accessible Rental

Having heard so many thoughtful and wonderful reviews from these 16 individuals and their families, my heart is full of emotion and love for all those who have helped me bring this mission to life. The home is available for standard rentals on AirBNB, and it is a “Certified Accessible Rental” under their new program efforts to ensure accessibility.

Funds donated and rental revenues go directly toward bringing ALS patients to the house at little or no cost to them. Under Windchime Wishes Limited, I offer deeply discounted stays for ALS patients as well as gifting one week per month to an ALS family that otherwise could not afford to take a vacation.

My goal was and always will be to find the funds to support gifting more and more weeks to patients and families living with major mobility challenging disabilities, and although my focus has been on ALS, I welcome people living with any disease or condition that creates a barrier to the simple joy of taking a vacation with family and friends.

Everyone deserves a vacation!

Leslie

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