Thanksgiving has looked different over the years for our Myotonic Dystrophy (DM) family.

When our family was young and had less DM symptoms our Thanksgiving was fairly traditional. Our second child and only daughter, Andrea was born the Sunday before Thanksgiving so her birthday often falls on Thanksgiving. For her 3rd birthday we traveled to St. George, UT and stayed in a Marriott and had an elaborate feast at the Marriott restaurant. We felt very classy. Andrea’s best present on that Thanksgiving was a rainbow colored My Little Pony. She was so excited and such a cutie.

We took turns spending Thanksgiving with both sides of the family or traveling to our favorite vacation spot (Lava Hot Springs, ID) and stopping on the way for Thanksgiving dinner at a fancy restaurant – Maddox. Lava Hot Springs is a tiny little town with a few eclectic stores that we would wander through. It is also very cold. The outdoor hot tubs create a setting where we all visit with grandma and grandpa for lengthy periods of time in the cold while being toasty warm sitting in the natural hot springs. We would eat Thanksgiving leftovers for most of the weekend. We went to Lava Hot Springs for many years with my parents and it is a fond memory for everyone.

When our family got older and showed more symptoms of DM we ended up being more and more withdrawn from extended family. It was a lot of work to take our exhausted family to other’s homes and I didn’t have the energy to entertain extended family since the bulk of preparation would fall on me without the assistance of my exhausted family.

Since Michael and Kent’s disease progressed we also had to adapt the food since raw vegetables and salads were potential choking issues. Michael had had several episodes of aspiration pneumonia due to aspirating food into his lungs, like salad. Most traditional Thanksgiving foods are DM friendly, like mashed potatoes, green bean casserole, yams and pie. We would just leave out the raw items or make sure that Michael and Kent didn’t help themselves to the risky items.

Part of my job every day, including Thanksgiving, was to wake Warren which was a lengthy process and interrupted my meal preparations. If I didn’t wake Warren he would sleep through Thanksgiving and never make it over to our house. All of the preparation for the meal fell on me since Michael and Chad were either asleep or exhausted on the couch and Kent was doing his own thing. Kent would help if I asked him to but due to his damaged executive function he couldn’t plan and carry through with a task. I would have to manage him step by step throughout the task and usually it was easier to just do it myself.

After Warren and Andrea moved out on their own we (of course) invited them over. When it was our turn to have them over, and not the in-laws turn, their efforts at bringing part of the meal was limited. First of all, they were asleep and we were lucky if they got up in time to arrive at the dinner. Andrea would usually bring bacon wrapped pineapple, a favorite. Because of her inability to get up at a decent time she would bring it with her to my house and prepare it in my kitchen. This, of course, added to the chaos of my routine for preparation.

To make things simpler I was eventually able to talk Kent into going out to a restaurant. Kent resisted this because he likes his routine and doesn’t realize the extent of what I have to do to prepare the Thanksgiving meal. Many Thanksgivings we enjoyed Bucca di Beppo because it was family style and you could make reservations (preventing a lengthy time waiting in line). Due to the limited income of our children it had to be our treat, which we could afford so that worked out well.

Now Warren and Andrea have their own relationships and no longer spend Thanksgiving with us. When I was at Costco this year I saw roast turkey breast with sausage and cornbread stuffing and a cranberry glaze. Wow, everything in one package. I purchased it and Costco’s turkey gravy. The day before I will buy a pie. Now the only preparation that I have to do is mashed potatoes. Our Thanksgiving dinner has shrunk to Kent and I, Michael and Chad. We are the highlight of Michael and Chad’s week and they are also the highlight of our week. It has become a simple day. After we eat we will play cards and watch a movie.

Over the years I knew that Thanksgiving was a lot of work. For everyone that cooks Thanksgiving dinner it is a lot of work. But ours seemed exceptionally difficult. It is only in hindsight that I can look at the difficulties that DM has created for our national holiday. We adapted the best that we could but when we were going through the years of this annual holiday it was hard to figure out why we resisted going to extended family dinners or why we resisted having extended family over. It felt personal and I assumed that we were non-conformists. But now I realize that our family’s limitations have created a need to distance ourselves. Now that I am older and have a greater understanding of our limitations I could possibly have done it different. But I didn’t have the wisdom or the words to explain it when our family was younger.