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TealKid and I on Friday Night

From time to time over the years, I have seen gatherings of teen peers for the allergy community come up.  I have wondered if, when the time came, TealKid would want to participate.  He’s extremely social (not sure where he gets that from 😉 ) but would he want to partake with others who deal with the same ins and outs that he does?  I would think it would be a no-brainer! Last year at the FAACT Support Group Leader event, I won the opportunity for he and I to attend FAACT’s Teen Retreat this year. Lucky us, it was in our home state! I was so excited that all the stars had aligned. We were going to have an amazing time.Then I told him about it.  He was NOT AT ALL interested. I told him in the spring because he likes to be prepared. He enjoys knowing what’s happening and I can appreciate that. We were going to be

Then I told him about it and he was NOT AT ALL interested. I told him in the spring because he likes to be prepared. He enjoys knowing what’s happening and I can appreciate that. We were going to be traveling with friends, which I thought he would love (shout out to Katie and A) and taking a Mom/boys road trip. As much as I talked it up, he was pretty adamant that he wasn’t going. I didn’t want to pressure him so I just made mention of it once in a while. He was not biting.  I like his input on things and don’t typically force things on him since he’s getting older, but I really felt like this was going to be an opportunity for him to really see that he isn’t alone, so we MADE him go. Very begrudgingly.

Curtis and Knives-scary!

He had the day off of school that Friday. At noon we set off with our friends for what should have been a four-hour drive but ended up taking a little longer. The boys were beyond amped for the trip!  We laughed because we assumed that it was going to be a much quieter ride home on Sunday after all the activities they had planned for the kids. We got to the super fancy hotel and got settled.  And then it began.

And then it began.

First off was the welcome by FAACT’s Eleanor Garrow-Holding.  She laid out the weekend after a warm welcome.  After talking about the meals available in the hotel, and what was around, we moved on to the keynote speaker. Curtis Zimmerman is an accomplished writer, juggler, and father, who also happens to manage Celiac Disease.  He gave an inspirational presentation mixed with actionable steps and engaging content, plus a little juggling lesson for one lucky (though reluctant) audience member.  I was hoping we would get more time with him, and we did which I am very grateful for. That night, the parents had a welcome party, as did the kids.  I wish I could tell you about it, but the parents weren’t allowed in, which was both unusual and nerve-wracking.  I know TealKid is growing up, but some things are still difficult. It’s all about baby steps, right?  So this was one for me. I knew he was in capable hands and they don’t snack in the rooms but still…  At 10:30 we picked the boys up and they were beat, or so we thought.  We went back to the room where they continued to play cards until 12:30.

The Boys- Who were NOT sleepy at all!

Saturday was a little rough to start because of the late night.  The kids had sessions with Curtis and Ron Meyer, who is a life coach. The adults had sessions on treatments, parent’s perspective on OIT, Traveling Abroad, and the dynamic Colleen Kavanaugh from Zego Snacks speaking about transparency in food manufacturing. In the afternoon we switched, and we did the same exercises that Curtis and Ron had done with the kids.  This was where the tears flowed.  We parents do so much and don’t really think or feel it, I don’t think. We are pretty much on autopilot, because who really has time to think about all we have to do?  Sitting knee to knee with Kim and Jill and knowing that they are where we will be soon. Feeling their strength and knowing that yes, it’s tough but we can do this, and really do we have an option?  What we did was a mirror of what the kids did in the morning, and gave us real concrete tools to use to increase our communication skills, not just with them, but with others. One of the greatest moments was getting a sheet that TealKid filled out with questions about how well he felt we knew him, and how he feels about his allergies. I won’t go into it, but I felt reassured that we are doing some things right but also acknowledge that we have room to grow.  The big event on Saturday was the DJ Dance Party for the kids. Again, I wish I could give you more info on this but we dropped them off at the door and were told not to come back until 10.

Sunday morning, we got back to it. The parents had the opportunity to ask some of the young adults our questions about growing up with allergies.  This was a great experience, as there are things we need to know, and corners we may not know to look for when dealing with our kids and how they manage the world.  It was great to see these young people from all walks of life. A singer, business people, engineers, Living the Dream and I think it was equally important for the kids to see this as well.  We then broke into a Middle School and High School group as parents to get first-person experiences from parents on the front lines.  It was great again to get some ideas about what we are going to be facing in the years to come.

Zak and Dori

One of the highlights on Sunday was the presentation by Zac and Dori Chelini. I don’t think there was a dry eye in the room. The strength and determination and never-give-up attitude that Zac has is a definite reflection of the amazing job Dori and her husband did as parents.  Hearing about his trip to Zambia, his mother not wanting him to, the preparation, and the gray hair it may have induced.  I can’t say I would/will react differently should TealKid decide to take on such an endeavor, but hearing about it at least gives me an idea that it CAN be done.

We ended with something that was difficult, heart-wrenching, empowering, and amazing. Over the weekend the kids were asked to write down questions they had for the parents, and the parents were encouraged to do the same for the kids.  Zac and Eleanor asked the groups the questions and the one that we collectively answered as a group was this: one of the kids asked if we parents ever regret having them. As a group, we all in unison answered NEVER.  Not for one instant. They are the strongest, smartest, most amazing group of kids I have ever met. I wish there were more opportunities for these young people to connect and be with those who really get it. They are kind of the lost generation in the allergy world. So many outgrow their allergies before the tween/teen years, so I get that they aren’t as large in number, but they are the most in need of guidance in many ways—including dealing with allergies.  Thank you to Eleanore and the entire team who made the event amazing.

Side note: for the kid who was unsure if he wanted to go at all, his favorite band was in Cincinnati (where the event took place) that weekend. I asked him if he wanted to leave the Saturday night party a little early to go to the concert, and he answered a resounding NO! When I asked TealKid when we got home if he wants to go back next year, he answered with a resounding “YES! Every year!”  He learned so much from the teens who lead the discussions that he still is coming out with little gems here and there. The night we got back he started with “Mom, Miss Caroline’s daughter told me some really great tips. She said to do the suggesting on where to go with friends and to make sure it’s good for you! She said most times they are like “Yeah! That works!”  Isn’t that awesome?”  That apple didn’t fall far from the Grateful Foodie tree at all!  Even tonight he was talking about some other info he learned.  Curtis said this would happen, these ideas would develop over time as the soak in. They sure have and I am one happy Mom.


TAGS: allergy, food allergies, Teens