Letting Go: Sleep Away Camp
By Jamie Pendleton, CACNA1A parent #Mirensmarathon
When thinking about my daughter Miren, who has a CACNA1a variant, I often find myself repeating Joseph Campbell’s quote, “We must get rid of the life we had planned in order to have the life that is waiting for us.” My expectations of motherhood and my duty as a parent have changed since Miren’s diagnosis. Before her birth, I thought success in parenting meant raising children who could provide for themselves, contribute to the greater good, and then one day, do the same for their children. Miren has already left a positive mark on the world; she shows her peers what rare disease looks like, that perseverance is cool, and that everyone deserves a turn on the swing. Her smile lights up the classroom, and we get cards weekly telling her how happy she makes others just by being around them. I’m not worried about her contributing. I’m worried about what will happen to her when she turns 18 and if she will be able to care for herself. I worry that I’ve done too much for her and that I’ve lowered my expectations of her because of her diagnosis.
At ten, I know it’s time for me to push her to gain as much independence as possible to become the best version of herself, because this is my goal as her mom. That’s why I’ve made the tough but exciting decision to send her to a sleep-away camp for children with disabilities this summer. I remember Lisa Manaster (CACNA1A Foundation Co-Founder and President) telling me that this was one of the best things she did for her daughter, Emily, when she was Miren’s age. During that conversation, I couldn’t imagine signing Miren up for an overnight camp, but Miren is now a few years older, and my thoughts have shifted; I actually feel like I would be doing Miren a disservice if I didn’t give her this opportunity. Over four days and five nights, she will participate in hiking, rafting, and ziplining modified to her ability while working on ADLs (activities of daily living). It’s my hope that she will come back a little more confident, be more willing to try new things and have a greater ability to care for herself.
Our OT gave us a recommendation for a local camp here in Colorado called Adam’s Camp. Several of her clients have attended and had positive experiences, which made me feel comfortable with the decision. Below are links to several camps that might provide similar experiences. I look forward to providing an update at the end of the summer.
From the Christopher and Dana Reeve Foundation - LIST OF CAMPS FOR PEOPLE WITH DISABILITIES
https://www.angelsense.com/blog/special-needs-summer-camps/
**If you have a camp to recommend, please let us know, and we will post the information (info@cacna1a.org). The CACNA1A Foundation and Jamie Pendleton do not endorse any camp on these lists. It is important to get personal references and visit the camps.