Make the holidays a time of renewal
As a child, I loved the holidays, especially the established traditions.
|Joanne and David Wechsler, with sons Adam (left) and Jacob, and dogs Sierra (right) and Denali|
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 all have holiday stress, too — and to be grateful for each family member. The challenges they might offer created an opportunity to practice communication and negotiation skills.
I made sure to stock up ahead of time on plenty of peer support from other parents of children with muscle disease, and to make time for my personal stress busters, such as going to the gym, taking a bubble bath or just reading a book.
I also resolved to stay focused on the positive things from the year, with a bent toward educating in a nonthreatening, non-judgmental way. For example, I might say, “Despite the problems I had advocating for special education services, Adam had a great school year, getting all A’s,” or “I did this really fun walk-a-thon. Maybe next year you’d like to join our team.” My goal became to forgive, understand, educate and try to get them on board.
|For the first time in several years, the Wechslers decided to simplify their lives by staying home over the holidays. When their boys, Adam and Jacob, now 11 and 8, declared it was their best holiday ever, “we knew we’d made the right decision.”|
Last year, for the first time in several years, we decided not to travel to visit family for the holidays. Although disappointed at first, our two boys quickly embraced the idea and got into decorating, cooking and planning activities. I relished the thought of not risking two six-hour travel days in potentially bad New England weather, not to mention the two days added back into my vacation. We hoped family would understand, but even if they didn’t, we decided celebrating at home was best for our mental health.
We created new traditions, celebrated in intimate ways, visited with friends, and rested and relaxed as a family, something we don’t often have time to do during the year. We lit the menorah and made latkes, decorated our tree while eating candy canes and listening to holiday music and, as usual, I cried when Rudolph ran away from home, despondent at having a disability. After the last candle of the Swedish angels burned down, we played Monopoly and baked cookies for the anticipated “visitor” that night.
Christmas morning was extra special. The boys lingered in their pajamas until noon, ate Daddy’s homemade waffles for brunch and assembled new toys and worked on puzzles together until dark. When they declared it was the best holiday ever, we knew we’d made the right decision.
The bottom line is this: I fight the good fight during the year, but during the holidays, I seek to relax, connect and renew my energy for what lies ahead.
Joanne Wechsler, of Jericho, Vt., is a family support consultant for Parent to Parent of Vermont,an organization for parents of children with disabilities.