It was a dreary Saturday morning. As I pulled into the drive of Camp Joy I was struck by the sense of dampness and the mist that encompassed the greenery and the scattered wooden buildings. What a shame, I thought, the weather was not cooperating for the families and children that had come from across the country to participate in Camp Courag“EOS”.
Camp Courag“EOS” is an annual event for families that have a child diagnosed with Eosinophilic Esophagitis (or EoE). Several years ago, 4C was invited to conduct the opening exercise for the parents and caregivers that attend this camp. I had arrived on this particular Saturday to once again kick-off their weekend by offering a Parent Café. Parent Cafés provide parents with an opportunity to share their parenting experiences, wisdom and challenges with other parents. I felt confident as I entered the building. Certain that what we had planned would be successful—yet I must admit I was not prepared to be swept away by this incredible group of parents.
The meeting room was packed. Thirty-three parents and caregivers filled the six round tables. Most of the parents did not know each other, however they certainly shared a common bond:their children were diagnosed with an illness that many doctors still do not fully understand. Yet here in Cincinnati, the doctors at Cincinnati Children’s Hospital developed an expertise in managing this illness—an expertise that many of these families travel thousands of miles to tap.
As the Parent Café unfolded, I found myself in total awe. The Camp Courag“EOS” parents were amazing and completely inspiring. One after the other I heard stories of how they knew in their hearts that there was something not right with their children. Yet most of them experienced disbelief and misdiagnosis from doctors who did not understand this illness. One parent said it’s like others think “You’re coo-coo.” Yet he was not. In fact his child’s gastric system was inflamed due to EoE and his child was experiencing incredible pain every time he ate.
And the stories continued—parents talked about struggles getting the medical treatment needed for their children. They talked about school personnel often isolating their children, and extended family members confronting the very practices that were keeping their children alive and pain free. Time after time these parents found themselves educating others and advocating for their child’s medically needed interventions. One parent reported, “The problem is our kids look okay on the outside and therefore others do not take the illness seriously.”
Wow—there it was! Though these children clearly had a severe and disabling illness, others doubted its very existence. The tenacity exhibited by these parents to hold to their beliefs and insist on medical interventions is a lesson to us all. Parents tend to know their children best and as experts are called to ensure their children are getting all that they need and deserve. And these Camp Courag“EOS” parents are doing this day after day.
As I pulled out of the driveway, the mist seemed less overwhelming, instead I was overwhelmed by the courageousness of unwavering parents.