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Travis, a Story of Hope
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(as seen through the eyes of his Auntie)
by Diane Wright
Travis was born in Canada on June 29, 1994. His parents, Beth and
Ray, enjoyed watching their happy baby grow. As Travis neared his
first birthday, his health began to deteriorate. For the next six
months there were numerous doctor and hospital emergency room visits.
Scores of tests failed to determine the cause of his failing
condition. Celiac Disease was one of the disorders that was ruled out
early on because he was not anemic. Still, the word "celiac" kept
nagging at his mother. Travis gradually became so weak that he could
no longer walk and his intestinal problems became more pronounced.
Getting him to eat became a constant chore. His skin was translucent
and his belly protruded like a child suffering from malnutrition. He
cried often, unable to tell anyone how much he was hurting.
In October of 1995, Travis refused to eat and became listless. Beth
rushed him to the doctor again. She carried a little scrap of paper
with the word "celiac" scribbled on it. Upon seeing this, the doctor
again told her "we ruled that out". But then he abruptly left the
room, returning ten minutes later with his decision to rush Travis to
a specialist 200 miles away.
His father spent the following night pacing the halls of the hospital
critical care ward with his son, providing small comfort to a child
who could no longer even lift his head. His mother wept, fearing that
she would never again hear the charming chuckles of her only child.
The following morning, Travis almost stopped breathing twice during
the biopsy procedure. They left the hospital with a confirmed
diagnosis and little information on the treatment required. They felt
so alone.
After weeks of frustrating phone calls, Beth found the help of the
compassionate people at the Tri-County Celiac Sprue Support Group in
Michigan. They took Beth under their wing and provided her with the
knowledge and confidence she needed. With their huge Shopping Guide,
she was able to provide Travis with a variety of gluten-free meal
choices. More dear friends were discovered at the Windsor Support
Group, providing shoulders to cry on and sounding boards for the
occasional bouts of profound frustration. CSA/USA and the Canadian
Celiac Association sent very helpful printed material. The Celiac
Listserv Archives on the internet
<http://rdz.stjohns.edu/lists/celiac/index.html> provided an abundance
of reliable data from the medical community and other celiac experts.
On the Celiac Listserv, a conversational link to over 2000 other
celiacs was established. Beth was not alone and Travis thrived.
Acting on the advice of celiac experts that all first degree relatives
should also be tested, Beth was diagnosed with Asymptomatic Celiac
Disease in November of 1996. She had no obvious symptoms prior to
diagnosis. After the initial shock, she was thankful that she found
out before any serious medical problems developed. She has to be
there to help Travis grow. She has to help him deal with the hurts
and traumas that are sure to come. There will be an untouched cupcake
at a childhood birthday party, teenage teasing and the unavoidable
dinner-date dilemmas. She must try to transform his pain into a
fierce determination and encourage him to become a strong advocate for
celiac rights and awareness.
There are bumpy roads ahead but Travis has a devoted family to smooth
the way. Parents, grandparents, aunts, uncles, cousins, and friends
will all contribute to the growth of this delightful child. His
father spends countless hours at play, teaches him to speak French,
and is careful not to put his knife in the food jars with the orange
stickers on them. His Grandmama teaches tenderness. Poppy is
constantly stirring up sumptuous soups and sauces for Travis' culinary
delight, and he scours the stores for gluten-free treats. Dearest
Nana, whose tears have mingled with Beth's through it all, felt the
pain and now shares each small triumph. Her songs will sing in his
heart forever.
When I talk to Travis on the phone from my home 1200 miles away, he
always asks, "Where's Tinkerbell?" Tinkerbell is my dog. When we
visited for six weeks this past summer, my feisty terrier taught
Travis how to bark incessantly. The constant yapping from the two of
them was really annoying! But you know what? I'm glad that Travis
lived to learn how to bark. I'm so glad my sister saved him on that
fateful day with that little scrap of paper in hand. Beth is my hero.
She continues to amaze me with her determination, devotion, and
tremendous patience. She is even teaching him how to cook and doesn't
even mind that he makes disastrous messes in her kitchen. She doesn't
even scold him when he snitches food off her dinner plate! How could
she scold him when his chuckles are so charming?
Thanks mostly to the expanding network of Celiac Support Groups and
the efforts of devoted people in the medical field, Celiac Disease is
gaining world-wide attention in the medical community and the general
public. We still have a long way to go to put a stop to the common
horror stories we hear. We grieve for those that found out too late.
We grieve for the lost babies.
We must have high hopes for this next generation of celiac children!
They are our future doctors, nurses, technicians, scientists,
researchers, journalists, and teachers. They are our future Support
Group leaders, activists, and advocates. They will be farmers who
will not contaminate the fields, food manufacturers with dedicated
lines of gluten-free products, chefs and restauranteurs who will take
special care to accommodate special diets. They are the future voices
of celiac awareness.
Personally, I hope they all learn to bark. I hope they bark so loud
and so incessantly that everyone will really hear them. Then everyone
will finally understand that sad little child...
The one who left the untouched cupcake at the childhood birthday party.
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