Monday, March 31, 2014

Ethan Gave Me A Sample of Soul Food At The Gluten & Allergen Free Wellness Event

I know you all were expecting a recap of the Charlotte Gluten & Allergen Free Wellness Event since it was absolutely AMAZING! There is so much info being collected from it and still re-posting that we actually are trending on Twitter as a suggestion! That probably doesn't mean anything to you if you don't use Twitter - But let's just say, the day had a tremendous impact.
To illustrate the impact our events have, I want to tell you just one story out of many...*warning: Get your tissues*
Meet Ethan...

Ethan & his sister

I met Ethan and his family at the first Charlotte Glutenfree Expo in 2009. Ethan has Ichthyosis, a rare genetic skin disorder.The word ichthyosis comes from the Ancient Greek (ichthys), meaning "fish." The severity of symptoms can vary enormously, from the mildest, most common, type such as ichthyosis vulgaris which may be mistaken for normal dry skin up to life-threatening conditions such as harlequin type ichthyosis. I do not know how severe Ethan's situation is right now, but when I met he and his mother, Ethan was struggling.

They came to the event and I remember seeking them out since his mother, Erin, and I had corresponded. Erin is like most advocate mothers who fight for their children, she is a mother challenged to make life normal. She also is involved heavily in a support group for Ichthyosis children and their families. To read their struggles breaks my heart, and yet I love all the positive energy Erin gives through her FB. She conveys that constant positive energy for Ethan which is worth major kudos alone.

That first event, I found Ethan half way through the vendor hall and I remember me asking him how he was, and he responded, "Miss Nikki, I am full already and I am really sad about it." 
That's it - I was hooked, line and sinker, into adoring Ethan and reaching out to children and making our events a safe place for them. You see, your heart would melt too if you knew how many of the top 8 allergens he must avoid, or else suffer a possible flare up. The simple fact Ethan was full was wonderful in itself.

Even when I feel like I am too exhausted or can't chew another serving I have heaped on my plate, the children give me strength. Being a support group leader for R.O.C.K. (Raising Our Celiac Kids) has been a joy many multitudes of times over. I am extremely honored to have been able to touch young minds that are eager to learn how to stay healthier. Now that we travel doing events, my heart is touched in each city in some way. These food allergy children have become my soul food that sustains me through extreme exhaustion like never before. 

It dawned on me, as I watched children during the Charlotte Gluten & Allergen Free Wellness Event on Saturday, that I have been blessed to have been a part of the growing process and journey to wellness for many children that I have never even met. And that equally, I had met allies to me as a mother in cities across the nation who were meeting the challenge to advocate for their children's health as well. It is innate that as mothers, we need to feel that we can safely feed our families.

Back to Ethan...Erin messaged to thank me on my FB because they had a wonderful time at the event and I didn't get to see Ethan this year. :-( It was the evening after the event, and with only 5 hours sleep in two days, my back hurting, and my feet feeling like chewed off nubs...I read the following and commented:
Erin: Missed seeing you... Think you were in a session. The venue was the best yet! There were so many new yummy things to try. The kids' room was an absolute hit! Thanks so much for all you do!

  • You  like this.
  • Nikki Everett Awww Erin ~ I missed seeing you and Ethan! I looked for you too. He always makes me smile. Thank you for coming to the show and for supporting all our efforts. Big hugs to all of you 
  • Erin: He was so funny today... He wore his pants with the most pockets in case he needed more space for samples. He pigged out and was actually full for once. I think this was by far the best expo yet. I'd love to see it held there again next year!
    March 29 at 10:02pm
  • Nikki Everett That is the best compliment anyone ever gave me, tell him I said thank you please. LOL pockets for extra samples. awwwwww! That is adorable! Can I quote him?
  • Erin: Absolutely . He'd love it!
March 29 at 10:29pm 
March 29 at 10:29pm 

I looked at that post for a minute, sat back in my hotel swivel chair and was suddenly overwhelmed. My heart felt so full, I thought my chest would burst. Tears started streaming down my face, and I immediately sent an email to my father to tell him how wonderful Ethan's gift of simply thinking to wear more pockets and being that excited for an event was. How...because of Ethan, I would walk through fire as if he were my own. And lastly, that no amount of praise ever feels as good as it does to know that Ethan is a part of my life now and is happy to spend time with us to share his beautiful smile.

Thank you Ethan. You make me a better person.

~Miss Nikki