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Make the Holidays a Time of Renewal
As a child, I loved the
holidays, especially the established traditions. We decorated a live
tree while listening to holiday music and watched Charlie Brown find
the true meaning of Christmas. Rudolph was my favorite, evoking tears
every year – a little bullied reindeer who persevered despite his
differences. On Christmas Eve we lit the candles that would propel the
Swedish angels around, ringing the tin bells as they went. 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 David and I melded our families, religions
and traditions. We would stress when we couldn’t live up to
expectations, but we managed well enough. Holidays were another issue.
Overburdening ourselves, we would spend too much money on too many
gifts and run ragged until we collapsed. We were experiencing holiday
stress.
When our son Adam turned three, he was diagnosed with
Duchenne muscular dystrophy and our lives changed forever. 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 the loss of my
mother, who only months earlier had succumbed to breast cancer. 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. Devastated and scared, we turned to the
Muscular Dystrophy Aassociation, which put us in contact with other
parents who knew what we were going through, having walked this road
themselves.
We were exhausted and stressed from the medical and school
challenges of raising a child with special needs. Just anticipating the
flurry of activity with the holidays approaching would send me into
stress overload. David and I decided it was time to examine our
physical limitations and to 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 simplifying decorations, holiday cards, meals
and gift giving, and by making a list and sticking with a budget. I
also would avoid all non-essential medical appointments and school
meetings that might be stressful. I would stock up on peer support, and
make time for my personal stress busters, such as walking the dogs or
reading a book.
To modify expectations, we had to be creative and be open
to what flowed. I learned to appreciate that, while some relatives were
supportive, others were limited in understanding parenting a child with
a progressive muscle disease. I learned to be empathetic – they have
holiday stress too – and to be grateful for each family member. The
challenges they might offer created an opportunity to practice
communication skills.
 I also resolved to stay focused
on the positive things
from the year, with a bent toward educating in a non-threatening,
nonjudgmental way. For example, I might say, “Despite the problems
advocating for school services, Adam had a great 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, educate and get them on
board.
Last year, for the first time in several years, we decided
not to travel to visit family for the holidays. Although disappointed
at first, Adam and his brother Jacob quickly embraced the decision. 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,
and rested and relaxed as a family, something we don’t do often enough
during the year. We lit the menorah and made latkes, decorated our tree
while listening to holiday music and, as usual, I cried when Rudolph
ran away from home, despondent at being ostracized for his differences.
After the last candle of the Swedish angels burned, we played Monopoly
and baked cookies for the anticipated “visitor” that night.
On Christmas morning the boys lingered in their pajamas
until noon, ate Daddy’s homemade waffles for brunch and assembled new
toys together until dark. When they declared it was the best holiday
ever, we knew we’d made the right decision. ©
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