Almost everyone loves holiday traditions. Besides being fun and giving us another reason to look forward to the holiday season, traditions promote family togetherness and camaraderie among friends, and provide an excellent way to make and share memories.
When ALS interferes with favorite holiday traditions, then it’s time to start new ones or modify the old ones to better meet your needs.
|Before Michael’s diagnosis, the deKruifs would always bundle up a week before Christmas and head off to a tree farm, in search of the perfect spruce. An artificial tree is now the centerpiece of their Christmas, but other family traditions continue.
May these festive stories provide inspiration for ways to keep the holiday season as memorable and meaningful as ever.
A needleless Christmas
The week before Christmas, Michael deKruif and his wife, Donna, of Waterford, Mich., would bundle up the kids and drive to one of three self-cut tree farms to harvest their Christmas tree. The family tradition came to an end a few years ago when ALS made it difficult for Michael to hold a saw.
Even more than the smell of a freshly-cut Christmas tree, deKruif, 56, loved the tradition of spending quality time with his family, both at the tree farm and warming up at home afterward.
So the deKruif family started a new tradition of family togetherness. Now, instead of chopping down a 6-foot spruce, they spend time together assembling a 6-foot artificial spruce. Pine-scented reed defusers give the house a holiday smell. One part of the old tradition remains the same: listening to Christmas music and decorating the tree as a family.
“Donna says the artificial tree is great, because there are no needles to clean up,” says deKruif. “There’s less expense all around, and anything that cuts expenses when struggling with ALS is a help. Lastly, there’s no dead tree to dispose of, and one less tree cut down.”
Donna also loves that they can carry on the season longer without worrying that the dry tree is a fire hazard.
Have them come to you
For many years, Dorothy “Dee” Drago had traveled to California, Arizona, Massachusetts or New Hampshire to visit her five grown children and their families for Thanksgiving and Christmas. After her ALS diagnosis in 2007, it was difficult for Drago to travel. Now her family spends the holidays at her house in North Las Vegas, Nev.
There are downsides to this new tradition: “I won’t be able to see their houses — and they have the decorations and all that,” says Drago, 80.
But in addition to getting help with her own holiday decorations, the new tradition allows Drago to visit from the comfort of her own home.
Drago also used to go Christmas caroling around the neighborhood with friends, but now she saves energy by having the carolers come to her. She’s still able to enjoy singing along.
“It was wonderful for me to go out caroling with them,” she says. “But I like them to come to my house.”
Snack in the New Year
|When Scott could no longer go out to celebrate New Year’s Eve, the Stafnes revived an earlier tradition of cooking up a batch of late-night pancakes. Scott, Kirsten and Eva, above, display their “2008” flapjacks before Scott and Eva chow down.
Like any young, childless couple, Scott Stafne and his wife, Kirsten, of Woodbury, Minn., spent the first few New Year’s Eves of their marriage going out with friends. After returning, the friends enjoyed a late-night snack of pancakes shaped like the numbers of the new year.
Stafne, 36, who was diagnosed with ALS in 2004, started having weakness in his left arm and trouble walking right around the time Kirsten, gave birth to their first daughter, Eva.
“Having a child affected what we could do on New Year’s Eve before the disease did,” says Stafne. With the birth in March of their second daughter, Miranda, going out on New Year’s Eve with two young children and “a guy in a wheelchair” would be a lot of work for Kirsten. “In practical terms, I am like a third child for my wife — she might even say that I act like a child sometimes, but either way, it makes getting all of us out the door a real challenge, especially in the winter.”
Since they needed to modify their old New Year’s Eve tradition into a family- and ALS-friendly affair, last year the Stafnes decided to hold a family New Year’s Eve dinner featuring pancakes shaped like the numbers of the coming year. They hope that this becomes an annual tradition.
“We struggle to maintain a sense of a more traditional family, with the two of us as parents, instead of a patient, caregiver, and two young mouths to feed,” he says. “So creating and maintaining traditions for any time of year seems more important to us now.
“Spending time with my girls is the most important thing to me — there’s no comparison.”
Giving the gift of memories
One holiday tradition Tim White and his wife, Angie, of Cedar Hill, Texas, are hoping to implement this Christmas is a letter exchange, where instead of exchanging gifts, each member of the extended family will write meaningful letters to other family members.
White, 50, who was found to have ALS in 2006, and Angie say the purpose of the exchange is to share funny stories, special memories and thoughtful gestures that are significant to each family member.
“It may seem a bit emotional, and some might consider it a bit morbid, because it’s almost what you would say in a eulogy, but it’s meant to be shared while our loved ones are still with us,” says Angie. “And it blesses everyone — not just the person with ALS.”