A Reason to Celebrate

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One year ago, through tears of pain, Cam asked me to “make it stop”. One year ago, we were introduced to a challenge that will affect our family for the rest of our lives. One year ago, Cam was confirmed a Celiac. Not many families will celebrate an anniversary of the discovery of a “disease”. But we don’t see what we have been challenged with to be anything but an opportunity. One year ago, we were given the chance to help our son; to allow him to feel better and to provide him some freedoms that had been lost to him. And from what we have discovered over the course of this past year, we consider ourselves lucky.

Did you know that 83% of the people who have celiac disease don’t know that they even have it? Did you know that this number jumps to 95% when the demographic is children? Think about that. Only 5% of children who suffer from celiac are properly diagnosed. With over 300 symptoms, ranging from intestinal issues to brain fog to even partial blindness, celiac patients are often given the wrong answer to their question of why they feel the way that they do. We are lucky.

But in hindsight, looking back over the past 12 months, we have been lucky in so many other ways. Every day, I remind my son of how blessed we are to have my wife be his “personal” chef. She has embraced the challenge presented to her, changed everything that she had traditionally learned and has made herself a tremendous maker of gluten-free meals. In our house, everyone has the same dinner. There is no separating what is being served based on someone’s likes or another’s dietary concerns. The pressure to produce is on her every meal and she knocks it out of the park every time. I didn’t fully appreciate how special she truly is until we were participating in a gluten-free Twitter chat last week.  During the course of the chat, she remarked how she could feel the difference in the gluten-free flours and doughs that she uses in comparison with wheat flour dough. Yep, she feels the difference between the two with her hands. Not only did she win the admiration of the chat participants, she further solidified my belief that she is my son’s greatest asset. We are lucky.

Speaking of chat participants, that is another area where we have been lucky. Through this blog, participation on social media channels such as Twitter and in experiencing random acts of kindness, we have met and become part of a caring and thoughtful gluten-free community. The support that we receive from people, some that we have never even met in person, has been tremendous. These relationships have not only showed Cam that he’s not alone in this journey but it has led to memories for him such as his life-changing week at summer camp and the awe-inspiring experience we had at the Final Four. Even my life has changed as there have been doors opened for me, professionally, to become a bigger part of this community and to continue to advocate on his behalf. We are lucky.

But aside from all of this wonderful support, in both our personal and our professional lives, my wife and I realize that where we are the most lucky is with Cam himself. Time and time again, he has proven to us that he can handle a situation such as the one he has been given. He knows that these are the cards that he has been dealt in his life and, with this in mind, he focuses on the solutions rather than dwell on his problems. He knows that he is his biggest advocate and we could not have asked for a better kid.  We are lucky.

So, on this one year anniversary of his diagnosis, I am not celebrating his “disease”. I am celebrating him. I love you, B.

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One thought on “A Reason to Celebrate

  1. Tina Howe

    I just discovered your blog, and instantly became a fan! I have a 10 year old son that was diagnosed with Celiac just over 1 year ago, after being seriously ill for much of his life.
    I recently started blogging myself in the hopes of raising awareness, and helping other parents that are raising a child with Celiac.
    I will be a regular visitor here, for sure 🙂

    Reply

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