What makes a holiday season special? Rarely is it
the gifts — usually it’s the people and the moments
we share with them. On these pages, several members of the MDA family
share treasured memories and traditions of holidays past and present.
TELLING STORIES
Francetta Crowley,
mother of Leslie Crowley Jr., 12 (Duchenne
MD)
Ellenwood, Ga.
I come from a family of 13 sisters and brothers. Every
year, on Christmas Day, my mother and father would put out presents
and boxes filled with gifts, fruits and other surprises. At the end
of the day, we would gather around the Christmas tree for another
treat and more presents. If you can imagine the number of children
in our family, imagine how many gifts lay under our one Christmas
tree!
Now, I share these same stories with my family of six,
as a holiday tradition. We give gifts in the morning and gather around
the tree in the evening to pass out additional presents. Leslie Jr.
has been the center of our lives. He brings our entire family joy.
Each time my mother visits us, he clings to her with anticipation
of stories of when we were growing up.
HATS OFF!
Luke Christie, 13 (SMA)
2006 MDA National Goodwill Ambassador
Due West, S.C.
The most unusual tradition that my family has is at Thanksgiving.
When all the family is over, we take photos of all the men with weird
hats on. The hats are different every year.
TREASURED GIFT
Morgan Fritz, 7 (SMA)
2005 MDA National Goodwill Ambassador
St. Peters, Mo.
My favorite gift was a clipping from the tail of the horse I ride,
J.R., with a ribbon tied around it from my instructors at Therapeutic
Horsemanship. I love it and still treasure it.
NEW TRADITIONS
Susan Peer, daughter of
Blaine Whaley, 73 (inclusion-body
myositis)
Jacksboro, Texas
Our family’s Thanksgiving is one I look forward to every fall.
Several years ago, my mother and father stopped hosting the traditional
Thanksgiving dinner because both had chronic illnesses. The new tradition,
now set in place, made this family holiday much easier for them to
handle.
Thanksgiving begins with all of our families gathering at the farm
to help collect firewood for the campfire. After the fire is lit,
we cook wieners on long sticks over the open flame. A can of chili
is heated up in the coals for those who prefer chili dogs.
Along with the hot dogs, there are chips, condiments, soft drinks
and hot chocolate. For dessert, s’mores! Roasted marshmallows
and a chocolate bar squished between two graham crackers are a favorite,
especially among the 16 grandchildren.
We end the evening sitting around the fire talking while the grandchildren
thoroughly enjoy exploring the great outdoors. Being outside in the
crisp fall air is a wonderful way to celebrate the season.
SMOKIN?
Jan Blaustone, 51 (limb-girdle
MD)
Freelance writer
Nashville, Tenn.
One Thanksgiving my husband and brother were smoking the holiday
turkey. Knowing it would take all day, my sister-in-law and I left
for a little sale shopping.
A couple of hours later we returned to our somewhat nervous husbands,
who declared the bird was done. They presented us with what looked
like a big black raisin on a platter. The bird was definitely “blackened”
rather than smoked and had shriveled to a quarter of its original
20 pounds.
All I could think of doing was to serve it with a hearty Zinfandel
instead of Chardonnay and open a second jar of gravy.
BARK HUMBUG
Chance Wechsler, 3,
Service dog of Quest Staff Writer Kathy Wechsler (Friedreich’s
ataxia)
Tucson, Ariz.
Christmas is a time of joy for most humans, but I speak for all caninekind
when I say, “Bah Humbug!” My Scrooge-like attitude is
a result of the frustration I feel during the Christmas season.
First, the humans bring in this huge tree and put it in a dog bowl
filled with flavored water and tell me I’m not allowed to drink
it. Then they take out hundreds of dog toy-looking objects and put
them all over the tree, and I get in trouble for admiring them.
My friend Sammy told me he once got yelled at for relieving himself
on the tree. How are we supposed to know which trees we can water
and which trees we can’t?
When the humans open their presents on Christmas morning, the floor
gets covered in an avalanche of crinkly, interesting-smelling paper.
I want nothing more than to plunge into the pile, tearing every sheet
I can get my teeth on, but they don’t let me do that either.
Then there’s the food. The humans spend Christmas Day preparing
a feast. Just when the mouth-watering turkey is ready and people start
sitting down at the table, they kick me out. I spend Christmas dinner
outside with my golden retriever cousin, Annie, plotting a strategy
to taste a juicy morsel of turkey.
This year will be different. I plan to invite all my friends from
the dog park over for the festivities, and then we’ll see who’s
saying, “Bah Humbug!”
EVER-READY
Andy Vladimir, 74 (myotonic MD)
Travel writer
Coconut Grove, Fla.
Because my wife, Ute, is German we follow her family tradition of
having real candles on our Christmas tree, which we light on Christmas
Eve. When we got married 18 years ago I was frightened this could
start a fire, and I insisted on getting out the fire extinguisher,
which I held in my hands pointed at the tree. I have long since forgotten
about the extinguisher, and now we sing Christmas carols.
WHERE'S THE TURKEY?
Jeni Stepanek, 47 (mitochondrial
myopathy)
MDA National Vice President
Mother of Mattie Stepanek, 2002-2004 MDA National Goodwill Ambassador
Rockville, Md.
It was 1997. I was a single mother and Mattie was 7. The old oven
in our tiny kitchen had a broken door hinge, so the door was either
closed or opened all the way to the floor. Even though the turkey
was only 10 pounds, it was too heavy for us to lift, so we put a pan
in the oven, and Mattie and I rolled the turkey up the door, into
the pan, and turned on the oven.
To baste it every 30 minutes, I rested the hot oven door (as hot
as the oven itself) on a folded towel across my knees and pulled the
turkey pan out halfway, so it balanced half on the rack, half on the
door. This went on for a couple of hours and it was fine.
But two-thirds of the way through, I forgot to put the towel on my
knees. I opened the door, pulled out the turkey and suddenly I felt
my knees burning. I flinched, closing my eyes for a split second.
When I opened my eyes, the turkey was gone. I swear on the Bible that
turkey was gone! The pan was tipped over and juice was all over the
floor. I tried to back up and my wheelchair wouldn’t move.
I called for Mattie, who came into the kitchen and said, “The
turkey is on the floor behind your wheelchair. It’s holding
you hostage.”
I don’t know how you would explain it in the world of physics.
Somehow the turkey had catapulted over my shoulder and landed behind
my wheelchair. Mattie couldn’t lift it, so I said, “Kick
the turkey around to the side.” He tried to push it with his
foot, but it wedged between the counter, the wheelchair and the oven.
It was trapped under my wheel and I still couldn’t move.
Initially, we were kind of in shock, and then it got frustrating,
and then we just started laughing hysterically. Because it was Thanksgiving
Day, all our friends were out of town, but we finally found a neighbor
who came and helped us get the bird back in the oven.
We did end up eating it. There was no way that bird was going to
win. When we pulled the wishbone, Mattie got the bigger half. He said,
“Next year I wish we would be invited to someone else’s
house for Thanksgiving.” That wish came true and I’ve
never cooked a Thanksgiving turkey again. I’m not risking one
jumping out and holding me hostage anymore.
BIG BREAKFAST
Travis Haire,
father of Victoria Haire, 10 (limb-girdle
MD)
Jeffersonville, Ind.
Every year since Victoria was 1, we’ve had an annual breakfast
with Santa for her friends at our house at Christmastime. We send
out invitations and have great decorations and, of course, a visit
from the big man himself.
The kids love it and so do the adults. I enjoy cooking and prepare
a hot breakfast every year.
