Thoughts from a Camp Mom

My daughter, Eden, was diagnosed with Crohn’s disease in August of 2017.  She was 11 years old and started her 6th grade year the day before her diagnosis. It was extremely overwhelming, to say the very least. We had to think of her treatment options and the side effects of each medication, make fast decisions that would affect her physical healing; but also consider her emotional state as a preteen dealing with the news of a chronic condition that she would need to manage for the rest of her life. What was Crohn’s disease? How would this inflammation affect her future? Could she have children if she chose to one day?  If so, would HER children have Crohn’s disease, too? What caused this in her, without having a family history of IBD on either side of our family tree? What lifestyle changes did we need to make to ensure a fast remission? How soon could she be in remission after the start of her first infusion.... a week or two, right? What foods could she eat without it causing her pain? 

As a pediatric oncology nurse, Crohn’s disease was new to me. I had never been exposed to it while working in the hospital; none of the children I took care of had IBD that I can remember.  The experience of pediatric nursing DID however, expose me to the knowledge of available resources that I could utilize to help Eden cope with her physical diagnosis, as well as her emotional well-being. She was silently struggling inside with the ‘what-ifs’ and unknowns, feeling like she was the only 11 year old that was going through the daily frustrations of pain, fatigue, and missing school for treatments and blood work. I needed her to meet other children with Crohn’s and to meet their parents, just to build a support system with people having a similar experience. 

Weeks turned into months and eventually, we finally found our heads above water. (It took a solid year and a half for me to understand the realm of Crohn’s and the various ways it can rear its ugly head.) I began following The Crohn’s and Colitis Foundation online to learn more about this disease. It was on their website that I found a link to Camp Oasis and registered Eden to attend the Texas summer camp in Bruceville. Our experience with Camp Oasis was incredible, from beginning to end. 

Camp Oasis is a co-ed residential summer camp program that provides children living with Crohn’s and Colitis a place to connect with other kids who were given the same diagnosis. It is a safe place where our children can try new sports or activities that they may not have ever been able to try due to their condition. They play games outside, have dance parties, water activities and do arts/crafts. They do not have to explain their fatigue to cabinmates, because their cabinmates understand it all too well. They get it. They do not have to make up a reason to go to the nurse for medications or extra support because their cabinmates understand that, too.  It is a refuge where these kids can be kids and grow confidence and independence in their condition. They realize that there are other children struggling with the same ailments and worries that they have. They are not alone and sometimes to a child,  knowing that fact is simply enough.  

Each cabin is divided into groups with children around the same age. Their adult counselors also have IBD.  There is an incredible medical staff on site 24 hours a day to administer daily medications and provide first aid, as needed. If for some reason your child is not feeling well, they will take care of them with the same understanding and loving care that you would provide at home. Child Life specialists, social workers, and therapists are there to help and encourage our children. There is strategy behind the scenes that ensures our children are having the best time possible, but are also having their emotional needs met at the same time.  I, as a mother, probably appreciated that the most.  

The campers attending camp are in different phases of their IBD experience. Each child has their own story to tell and for Eden that was eye opening and very helpful to her. Some children had surgical scars or ostomy bags; Some were swollen from their steroid treatments. Some children were shy about their story, while others were more vocal and accepting.  Regardless of where each camper was in their IBD venture, they were all connected together with a shared seam. Camp Oasis as a place where kids could feel ‘normal’ for a week. It was focused on fun however, IF a camper needed extra support with questions or concerns about IBD or their own experience, a medical team was available to provide that support for them and follow up with them. The campers are encouraged to write a letter to their diagnosis on the first night they are there. Eden found this to be extremely helpful to her and I can imagine that this may have been the first time many of these children have even addressed their diagnosis head on. There is also a night where the campers can write down questions anonymously and have their questions answered by members of the staff.  

The application process was thorough and lengthy. To me, that was a good thing! They knew Eden by name every time I called up to the office to ask a camp question. The packing list was accurate and they sent individual medication bags for each day (per meal time) for us to fill and return to the camp clinic. They ensure that the medical regimen that the children are used to at home will not be interrupted. Regarding medications, I found that the consistent mealtime distribution routine actually helped Eden with her compliance and independence.  She actually told me that the nurse would watch her take the medications and then praise her after doing so. Even though she was 13 years old at camp, the simple praise was rewarding for her and filled her with a sense of accomplishment.  Eden also mentioned that the camp food was really good. The food that was offered catered to IBD food sensitivities (gluten free, etc) without making the children who needed these accommodations feel any different than those that did not.  

We wanted to check them in ourselves and meet the staff that we had gotten to know over the phone.  The girls were nervous and excited and we were excited and nervous for them, not really knowing what to expect. The check in process went fairly fast (although the line was long). I did not expect to get as emotional as I did while we were standing in line waiting for our turn. In the one and a half years since Eden’s diagnosis, I had never been in the same room filled with families that looked like ours. I got teary eyed and then cried to the point of embarrassing my daughter, BUT it was a beautiful moment for me. Parents from all over Texas and Oklahoma drove hours to get to this camp that our children had waited for weeks to attend.  Some campers knew each other from years before, while some were being welcomed for the first time with such loving arms. I wasn’t prepared to say good bye so soon, as I had envisioned helping her set up her camp bunk and fluff her pillow. Again, the strategy the staff has in every aspect of every detail enables our children to go, grow, and become the people they are supposed to be. 

Camp Oasis is a stepping stone for our children’s acceptance, understanding, and independence of their ‘new normal’. Despite the miles and distance, the friendships that that camp introduces is a safe haven and support system for our children to lean into for years to come. I told Eden that as much as I want to understand what she goes through every day, I can’t. I can’t feel the burning pain she describes to me or the fatigue she feels most of the time. I do not know what it is like getting stuck with IVs every month and having to miss another event because of her diagnosis.  However, there IS a group of people that can relate to her and her feelings. There IS a place where she can belong and have fun and not have to explain herself. That group is Camp Oasis.