Monday, June 3, 2013

My Own Celiac Awareness

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.