My First TMA Quality of Life Family Camp

By Krissy Dilger, Program Associate at the TMA

As a kid, I never attended sleep-away camp, so I did not know what to expect when Sandy and I drove up to the Center for Courageous Kids on Saturday afternoon. The bright blue roofs of the camp’s housing and recreational buildings paired with the green fields of grass painted a beautiful landscape that helped build my anticipation for the next five days. As the newest staff member of the TMA, I was excited to meet the families and learn from their experiences with rare neuro-immune disorders. I had been told by other TMA staff that I would gain a perspective from the TMA community that I could not have attained without attending camp. I was not disappointed.

Photos by Sandy Siegel

Over the next few hours, camp became a whirlwind of excitement as the families arrived and activities began. Returning campers quickly jumped into the swing of things and helped show new families the ropes. I was amazed by all the activities offered by the camp! Horseback riding, fishing, archery, swimming, bowling, arts and crafts, woodshop, cooking, and so much more. I could see why this camp was so unique and special: the kids were able to just be kids. They were not limited by any disabilities.  They didn’t have to worry about whether their wheelchair or walking aides would prevent them from participating. They were all on an equal playing ground. I felt the joyful and carefree atmosphere with every laugh and smile from the kids, and I was thankful to be a part of it.

One of the programs the TMA Quality of Life Family Camp offers is an educational session from leading medical experts in the field who also attend camp. While the kids were occupied by carnival games and other activities with the counsellors, their parents were able to learn from the medical experts and ask questions about all aspects of their children’s care. As I sat in on these sessions, I gained a deeper understanding of just how complicated and stressful it can be to care for a child with a rare neuro-immune disorder. There is a lack of understanding by many medical professionals who are not as informed as our experts, and it can cause unnecessary hardship and frustration to our community. One important conclusion I drew from listening to these sessions is that scientific research needs to be made more available to families so that they can provide this information to their health care team. As a result, I have become more resolved to review research and ensure summaries of this research are readily available for our members who rely on it.

Among the many benefits of camp, one of the most apparent is the connection made between families. Camp creates a unique atmosphere where families can find comfort in their shared experiences and ongoing realities. Relationships are formed in the dining hall, where families share meals sitting side-by side at long tables, and in the lodges during free time in the mornings and nights. They are formed while the families smear shaving cream and oatmeal on one another during Messy Games, and while they watch their kids sing and dance on Stage Night. I was a little worried coming into camp as an “outsider”, someone who has never had a rare neuro-immune disorder or known someone with one of these diseases before working for the TMA. However, I was easily swept into the community umbrella that camp created. Connections were made based on compassion and understanding, despite age or diagnosis or overall experience. I was happy to witness families exchange contact information and Facebook friend requests on the last day, knowing the connections they made were valuable and would extend beyond the bubble of those five days. By the end of camp, I could not tell the difference between returning campers and first-timers – everyone had become family.

To say that my first time at the TMA Quality of Life Family Camp was successful is an understatement. The entire experience far exceeded my expectations, and I am grateful for each moment I spent with the families and medical experts. From the wonderful counsellors to the jam-packed programming, the Center for Courageous Kids provided us with everything we could have wanted out of a camp experience. Going forward, I’m excited to continue the TMA’s work on education and advocacy programs, and I can’t wait to do it all again next year!

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