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By Stacia Wagner
Monday, August 6, 2012
Mark and I
Mark and I

This week is my first week at work following a week at the Teen Heads Up Conference (HUC). The conference is held at Camp Mak-a-Dream in Montana. This year, in addition the amazing Camp Mak-a-Dream staff, there were 40 teens, who were undergoing or had completed treatment for a brain tumor, and 10 young adult survivor mentors. Each day we had educational and life discussions, along with recreational activities.


Each night there was a fireside chat led by the young adults. What amazed me was the positive energy each topic and challenge inspired from the group of teens. When we talked about disability and changes in friendship, the response was “take the “dis” off disability and turn it into ability”.  When we talked about lack of peer support, the response was “Stay positive and confident, we are just more mature than others our age due to the things we have faced. We will have more friends when we get older. “

While I sat back and contemplated how they could all be so positive and wondered where was the anger and sadness, I was missing out on the strength and hope they were building in each other. There is something safe and protective in the world we create at Teen HUC. It is a world of equality, free from judgment, and full of unconditional support. Do I know this world does not exist outside of our Teen HUC bubble? Yes. Is it our job to help build confidence, provide advocacy “tools” and to prepare them for the reality of judgmental and superficial people? Yes. But is it also ok to just enjoy living in that world for a moment? Yes.

On the day we discussed common cognitive challenges after a brain tumor and educational accommodations, the teens took 15 minutes to discuss what the ideal teacher and ideal classroom would provide. Their suggestions for an ideal teacher is one who: provides assistance throughout the year, treats them fairly and not like they are “stupid”, does not judge abilities based on their appearance, is flexible, understanding  and has a sense of humor. I am sure many of the participants had teachers who possessed these qualities, but many did not. Is that the real world or still part of the magical camp bubble?

As an adult and a professional who works in the brain tumor world every day, the adjustment to the real world should be easy. But I struggle and long for the warmth of this special group. I know the adjustment is much harder for the teens and mentors. This session is a reminder of the need for increased programming and support for a population who spends so much time supporting their parents, siblings and each other. A huge thank you to each of all of the Teen HUC members. You made this week unforgettable.

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