It’s the most wonderful time of the year. The decorations are beautiful. The lights are magical. People seem cheerier.
There’s the joy of giving and receiving. And, there are family traditions – like cutting down a tree, reading holiday stories, baking cookies, and singing carols – that make everything feel extra special.
For families affected by ALS, the holiday season can bring painful reminders of what the disease has taken away. But, the season conjures as many (or more!) reminders of the love shared among family members.
Christy Kaelin’s father, Ray Sink, passed away from ALS last month. She will miss him terribly this Christmas – her first without him – just as she misses him every day, but she’s thankful to have so many happy holiday stories, including one particular tradition.
“My dad always put up this huge, inflatable snowman in the yard,” says Kaelin. “It was half as tall as the house and he wanted to make sure you noticed it. He would ask you multiple times, ‘Did you see my snowman out there?’ And, if the wind knocked him over, he was out the door and busy securing him until the next gust of wind would challenge him.”
Desaray Granzow has great holiday memories of her father, Ray Lippitt, who passed away from ALS in September 2012. She also recalls how ALS started stealing traditions from her family.
“My dad loved cherry cordials, so I always bought him some for Christmas,” says Granzow. “But once his ALS progressed to a certain point, he couldn’t eat them anymore. He also couldn’t enjoy foods he loved. His ability to eat and swallow became limited and he started medications that interacted with some of his favorite things, like coffee and chocolate.”
Lippitt opted not to have a feeding tube, so his food needed to be broken into small pieces. Meat was replaced by eggs, vegetables were steamed, and so on.
“Many holiday gatherings are centered on food,” explains Granzow. “My dad was always worried about limiting us, but we just wanted to make sure he was comfortable and felt included. So, we altered meals to fit his needs.”
Kaelin adds, “The biggest thing I’ll miss this Christmas is the joy family togetherness brought my dad. Anything he could do to make you smile would make him so happy. When we were all together for the holidays, there was a special peace and calm about him. He would repeat over and over how much he loved having us all together, giving the gift of time to each other.”
In honor of the holidays, and the joy you receive from holiday traditions, do something special to impact people living with ALS. Host your own Facebook fundraiser to help us raise $100K through personal fundraisers this month. (We’re well on our way!)