Posted by Erin Spaulding on June 12, 2024
Camp Oasis transformed our daughter and became an "oasis" in her IBD journey. I am honored to share my experiences as a parent and provide tips and takeaways to providers and parents about sending your child or teen to a safe and transformative place.
After a very uncertain and traumatic 1 ½ years of invasive and inconclusive tests, Caroline received the diagnosis of Crohn’s a few months before her 10th birthday. We painfully watched our once vibrant, athletic, outgoing daughter withdraw from the world she knew as she adjusted to her “new normal”- doctor’s appointments, medical procedures, and treatments (pictured above at the start of EEN for 3 months); often missing school, soccer games, ballet classes, and other social events because of the decline in her health.
A few months after diagnosis, her social worker gave us the information about Camp Oasis during a clinic visit. My first reaction was “how the heck can I send my child with all of this medication AND a long list of food allergies safely to a camp in the middle of the woods hours from home?” I hesitantly took the paperwork, thinking “there is no way to do this, and she won’t want to go.” But on the car ride home, she too read the brochure and started talking about it. We took a leap, actually filled out the paperwork, and 6 months after diagnosis we dropped her off for her first camp session.
Taking a break from the medical routine was the best thing for Caroline, and for us as parents. On the way to drop-off, it was quiet in the car as we all had a bit of the “fear of the unknown.” Despite memorizing the incredible packet of detailed information sent by camp staff forwards and backwards, I was uncertain about handing my daughter off to others to take care of for a few days (again in the woods - I had to work through that!)
We all got out of the car hesitant, until we saw her medical team not in white coats but in camp shirts. They were not her providers in this space, they were people. We were greeted with warm smiles and hugs, and during the extensive medical check-in, I was reassured and trusted that “they had her.”
In the weeks leading up to camp, I collaborated with the camp director and support staff to ensure that she could safely participate due to her food allergies, and at the time, her diet used to treat her Crohn’s. They answered every question (sometimes more than once) and sent us a menu so that we could create a shadow menu in our kitchen that was modified for her allergies and IBD. The medical team sent detailed instructions and provided us with pill bags to sort her medication in advance. We packed everything for her in coolers, labeled with instructions. It was how I controlled the hand-off if you will, and at drop-off it again solidified the trust I had built with the team.
The Camp Oasis staff and medical team are equipped to handle any situation that may arise; it is communicated in writing and throughout the drop-off process. One thing to emphasize is that, as a parent, you have to work through the fact that you won’t have contact with your child or the team (unless there is an emergency). Camp is a safe space where our kids are “just being kids.” The phrase “no news is good news” became my mantra. I didn’t sleep well that first night after drop-off, but my trust in the team reassured me as the days went on.
We picked up a different child!
When I returned to pick her up a few days later, I gathered with other eager parents, not fully knowing what to expect at our reunion with our campers. I watched her from afar laughing, talking with friends and staff, wearing her camp shirt and her red bandana from color wars. She had color back in her cheeks, she was happy, she carried herself differently. I had to manage my own emotions and step away before she saw me crying (happy tears!). In the car I snapped this picture before we drove off; I had not seen Caroline smile in such a long time. Camp Oasis gave us back our daughter.
As much as I wanted to grill her for the entire 2-hour ride home, staff prepared us to give her space to process her camp experiences and warned us that the re-entry back to home life could be bumpy. Giving Caroline time and space to reconnect with family and friends and share her stories and photos in her own time was the best advice we were given and followed.
Caroline has made lifelong friends through her participation in Camp Oasis.
She has looked forward to her sessions every year and often used the skills she learned at camp to help get through her treatments and tough procedures. She gained confidence from that very first session and over the years it was the best “infusion” she could get each summer. Camp led to other opportunities with the Crohn's & Colitis Foundation (CCF)…she became a patient advocate at "Day on the Hill" in Washington DC and spoke in front of members of Congress; she was selected as the Honored Youth Hero at our local Take Steps Walk where she made a speech in front of hundreds. She was more comfortable sharing her journey with friends and family, advocating for herself in healthcare and school situations.
Camp Oasis transformed our daughter…and now that she's older, she is planning to become a counselor and pay it forward to other kids and teens with IBD 💚💙