The rest of the year is stressful enough – make the holidays a time of renewal

by Joanne Wechsler

Joanne and David Wechsler, with sons Adam (left) and Jacob, and dogs Sierra (right) and Denali

As a child, I loved the holidays, especially the established traditions.

I helped my mom with the Thanksgiving feast, proudly assembling hors d’oeuvres for the family gathering. Later, we mailed holiday cards and prepared for Christmas. We decorated a live tree while eating candy canes and listening to holiday records. After dinner, my dad would run a slide show and we’d reminisce about happy times gone by.

Over bowls of ice cream, we watched Charlie Brown find the true meaning of Christmas and Frosty come to life. Rudolph was my favorite, evoking tears every year — a little bullied reindeer who persevered despite his differences. Christmas Eve we had a dinner complete with Swedish angels. The heat from the candles propelled the trumpeting angels to whirl around, ringing the tin bells as they went. Mesmerized, we stayed up late playing board games and pondering what might be under the tree in the morning.

As the years rolled by, I grew up, went to college and got married. My husband and I melded our families, religions and traditions and, although stressful at times, I reveled in all my new family. Although we couldn’t always live up to expectations, we managed well enough. Overburdening ourselves, we ran ragged until we collapsed, spending too much money buying too many gifts for too many people, and attending more parties than we

could count. We were experiencing holiday stress.

When our son, Adam, turned 3, we received the news that changed our lives forever: He had Duchenne muscular dystrophy. Now, as parents of a child with a neuromuscular disorder, we discovered real anxiety and intense stress. We were thrust into the disability world, filled with medical specialists and a quagmire of disjointed services that were difficult to understand, let alone navigate.

To compound the stress, I also was grieving my mother, who only months earlier had succumbed to breast cancer. As she was the last of the grandparents, my husband and I were now on our own. Our siblings spread across the country were busy with their healthy children. They didn’t know how to support us, and we didn’t know how to ask for the help we needed. We loved our extended family, but they didn’t always understand. Devastated and scared, we turned to MDA, which put us in contact with other parents who knew what we were going through, having walked this road themselves.

Stress became part of our everyday life. We found ourselves exhausted most of the time from dealing with medical challenges and school. And on top of all this would come the holiday season, bearing its own special load of stress. Besides the onslaught of a million more things needing my attention, I also

would be flooded with family memories and the hope of re-creating the feelings I had as a child — only to be disappointed because I couldn’t do it all.

Just anticipating the flurry of holiday activity was enough to send me into stress overload. Finally, I realized that I needed extra support, as I was arriving at family gatherings stressed out, instead of with an open heart ready to enjoy the fun.

In an effort at sanity, my husband, David, and I decided it was time to examine our physical limitations and modify our emotional expectations. What was our goal, after all? Mine, I decided, was simply to create a fun and relaxed holiday experience my children would recall for years to come.

I started by asking myself how much work was realistic, and which things we could let go. I decided to simplify decorating, holiday cards, meals and gift giving, and to make a list and stick to a budget. I also would avoid all nonessential medical appointments and school meetings that might be stressful.

As far as modifying expectations, we had to be creative, as well as open to what flowed. To fully enjoy family gatherings, I had to learn to appreciate that, while some relatives were very supportive, others were limited in understanding parenting a child with a progressive muscle disease. I also learned to be more empathetic — they