by Mary Bryant
My husband has ALS FTD and is in the late stage of home Hospice with me.
We have a family of ten counting our children, their spouses, grandchildren, and us.
We all went on a lake houseboat cruise around Smith Mountain Lake (SML), in Virginia.
We had the houseboat for 3 wonderful days.
Since we live on SML we were able to dock the houseboat at our dock. At night we had big family meals at the house, went out to nearby restaurants, and had drinks and appetizers on the houseboat.
The family loved sleeping on the boat at night. It had two large master suites, two large bathrooms, and cots in the living area. It also had a fully stocked spacious kitchen with 2 separate dining booths and even a kitchen island.
The grandkids played fun games at night and stayed up late laughing until bedtime.
One day we rented a jet ski and spent hours taking turns riding it around the coves and into the main channel.
When I looked out our kitchen area outside to the festivities below It looked like the most amazing theme park below.
- Kids jumping off the houseboat
- Family relaxing on the top level of the boat
- Kids going down the slide
- Family jet skiing around the coves
- Family floating around the boat
- Family playing cards in the front of the boat
- Others sitting and relaxing
- Some fishing
We spent the night eating a wonderful meal and talking about all the fun we had that day. We were also celebrating Bob’s birthday and the youngest granddaughter’s birthday.
We laughed so hard we cried. So much emotion with Bob’s difficult journey but so much joy for the love we all have and feeling blessed to have this time together.
My favorite part was to watch the family thoroughly enjoying themselves. I would sit in the yard and watch the entire family playing like little children. It brought back so many memories of them when they were young.
Bob found it so comforting to watch all that adventure, fun, and excitement. He will forever remember those treasured moments together.
I have framed many of those pictures and they are hanging by his hospital bed at home Hospice. He tells me daily he loves those moments in time.
He was very content to sit and watch the family, he sat and played cards, enjoyed the views and listened to good music.
There were no obstacles for him.
This adventure mostly means someone cares about people struggling with ALS. Steve Gleason and all the employees are fantastic. It is so difficult to navigate a terminal disease.
Steve not only does that but also has compassion for others and provides these amazing adventures.
We received that information and the next day we were awarded this trip.
It is hard to explain the sense of joy we experienced hearing this good news.
It also gave Bob even more of an incentive to keep fighting. “No White Flags”
Thank you, Steve and employees from the bottom of our hearts.
Your generous spirit and love of adventure is a blessing to so many families sickened with ALS.
We pray you are at peace and know you make a big difference in so many lives.
