Two years ago today, we received the news that Mabel has
Celiac Disease. It is a day that is
etched in my soul. The phone rang two
more times that summer with the same diagnosis for both Meg and I. The avalanche of news, research, doctors
appointments, walking aimlessly through grocery stores, blood draws, and biopsies was a lot. And
nights laying in bed worrying about futures, other diseases that threaten,
infertility, making up school work, sending my girls off to college, seemed insurmountable. Here I sit two years later and I
couldn't be more proud of how far we have come.
It hasn't been pretty or easy but it has been an adventure that has
surprisingly bestowed gifts of deeper appreciation, clarity, perspective, strength, resilience,
bravery, patience, and understanding.
Celiac provides us with a daily dose of learning more about
ourselves. Just when you think you have
it all figured out, a new symptom, a new article, a new encounter, quickly
reminds you that the pursuit for health must be constant and a thicker skin is absolutely a component of our overall health. I'm really not shocked by too terribly much
anymore, but every once in a while, I get surprised.
When a school official told Pete and I that our youngest daughter was
most likely "maliciously manipulative" rather than suffering from an anxiety/panic
disorder, I remained completely calm. When a Mom at a second grade gathering said,
"You must be so thankful to have a high functioning autistic", I
explained that Mabel is not autistic but does have Celiac Disease. And when she
responded with, "are you sure, because there is a lot of gluten free hype
out there", I knew to make a quick two sentence explanation of the
disease and then make a getaway!
When my doctor disputed whether or not Celiac Disease was an autoimmune
disease, I engaged in the discussion because I couldn't let that go with a
physician. When I realized that she
wasn't going to listen to me, and was in fact quite close minded, I left the
office and began the search for a new physician. I still slip up. I'm human.
There are times when I get frustrated, or angry. There are times when I cry but the vast majority of time, we find a way to laugh. Here's the thing, I'm a mom to three
children, two of which have the same disease and one who carries the gene and they all experience repercussions of life with Celiac Disease. I have to make sure that I teach them to
vent, process, feel, and then persevere.
I let one experience get the best of me. A few months ago a friend told me that I wasn't
"handling things well." She
told me that my children are perceptive and they follow my lead and that I was
leading with an uninvited, defeated and victimized example. I was shocked. I was
greatly affected because it was said by a good friend.
Doubt set in as well as a great deal of feeling judged and rejected. I've always been a person that struggles with
caring way too much about what other people think. This was no different. May was Celiac Awareness month and it brought me to the
realization that she was wrong. Through
a tidal wave of articles, facts,
personal stories and my own month of experiences, I realized that I had
wasted precious time worrying about her judgments.
This school year was the hardest year of our
lives with 44 absences for Mabel alone and her new diagnosis of an anxiety/panic
disorder. Thrown in with that we had expensive art therapy, welts, hives, six cases of strep, two rounds of bronchitis, and allergy shots every other day. Gus struggled with illnesses through the beginning of the school year and shared his sisters strep three times. Meg had her own fair share of absences and experienced friends who talked smack about her cross
contamination measures. Missing the 8th
grade trip to D.C., and missing countless
events and gatherings rounded out Meg's school year.
My friend may
view that list as focusing on the negative but for us, this family that lives
it every day, the list represents everything we overcame. It's a list of challenges we faced and
conquered. They happened and are real so
they are acknowledged right alongside the list of all the lemonade we squeezed from
those lemons. Mabel got through 2nd grade
superbly despite all of her absences and took on anxiety like a true warrior. She met every mark and goal that her classmates achieved. The love, expertise and guidance given to us
from an amazing 2nd grade teacher as well as an amazing therapist astounded us
and we're forever grateful. All those
visits to the pediatrician resulted in enough opportunities to badger our
doctor about the signs and symptoms of Celiac and he finally diagnosed four kids who are now headed toward a healthier life. I overcame my
fear of giving allergy shots to my kids and after inflicting tears, and a great
deal of my own blood loss, I'm a pro.
Meg
impressed us with the way she handled her friends smack talk and her confidence
is a sure sign that we're doing something right. She achieved straight A's all year in accelerated content classes despite her absences. Meg played in two basketball leagues and exceeded all expectations by taking on volleyball as a new sport. Classmates went to D.C., while Meg and I headed
to the beach where I was reunited with a great friend and was able to make
memories with Meg that I will cherish forever. Gus excelled in 3rd grade and all the while, supported and loved his sisters through all of their challenges while also giving us thrilling basketball and baseball games to watch.
I would say that is a full pitcher of lemonade!!
Yes, I'm bragging about my children. They amaze me practically daily with their tenacity and sweet support of eachother. We had a really difficult school year, and through those experiences, we're very aware of the fact that our country has a long way to go in terms of Celiac Disease Awareness. The year was extremely isolating due to illnesses and the precautions we had to take. Because of that, I'm very aware of the importance of good friends who support us from near and far, like my friend Lisa who sent me a message while I was writing this post. She remembered this bittersweet anniversary and how it changed our lives forever. She "gets us", and that fact alone, brings an exhale, smile and even some tears.
