by Stephanie Shea

Published: Lifelines for Health Fall 2019

In June, we had the opportunity to attend CHES' After the ShockSM inhibitor camp. It was a hard decision for my family as it happened to fall on the same weekend as our local chapter’s annual camp. Although my 5-year-old son Dakoda’s inhibitor isn’t “active”, we decided to go to After the Shock as we felt we might relate more with this community. And I’m so glad we did. One of the biggest blessings that we have found on our hemophilia journey has been the community....and the love and support we get from them. At times, we have felt isolated among the “normal” hemophilia population. Not all, but many that I’ve connected with, seem to infuse factor prophylactically a couple to a few times a week with no issues and they have been fortunate enough not to experience any major traumas.

Those of us that have experienced inhibitors know that it’s an entirely different ballgame for us. Although Dakoda’s inhibitor has been considered partially tolerized for almost 2 years, his half-life is very short, so he still needs daily infusions, aka, needle pokes. Daily infusions can definitely take their toll on a family, not to mention the task of emotionally healing from past traumas (head bleeds, prolonged bleeding from ports, joint bleeds, etc.). Most families with inhibitors know this path all too well.

On the first day of camp, we learned that every family was assigned a camp “buddy” who would stay with the kids for most of the day, even while parents went to educational classes. On the first day, my husband and I were on the tennis court, watching Dakoda and his little brother Phoenix “play” tennis. We started talking with a father who we’ve met before at other events. Dakoda and Phoenix wanted to run to the upper fields to play soccer with their camp buddy.

The other father we were talking with could clearly see the anxiety on our faces (as we have very rarely let Dakoda be with anyone other than us or one or two very trusted family members). The father of the boy was several years older than Dakoda and he shared his own experiences with anxiety. He encouraged us to let go and trust that Dakoda would be ok without us. During the conversation, my husband and I both teared up and were greatly touched. It set the stage for us to loosen our grip for the rest of the weekend and it felt like a turning point in both of our personal healing journeys.

Everyone in the inhibitor community seems to just “get it”. They get that we’ve all seen our children in pain, we’ve all seen them suffer and we’ve all been through a lot of trauma, which often results in fear and anxiety.

Aside from the immense emotional value we received from talking and sharing with other parents, the camp itself was incredible. Set on a lake in the

Pocono mountains in Pennsylvania, the scenery of Camp Zeke was breathtaking. We were surrounded by lush green trees and grass and it was so nice to be immersed in nature. We have attended many national and local events in the hemophilia and inhibitor community, and they have all taken place indoors, mainly in small windowless classrooms. The difference at After the Shock was staggering. The kids were able to be how kids are meant to be - running carefree and playing in nature. Even when the parents were in educational sessions or talks, the rooms had huge windows overlooking the lake and giant trees, giving us the sense that we were in a forest.

There's so much to do at Camp Zeke, that there was never a dull moment. There was the lake, of course and
all the activities that came with it (kayaking, fishing, swimming) with an outdoor pool, nature trails, a full theater, art studios, and so much more!

The educational sessions were great too! In addition to Current Treatment of Inhibitors and separate “rap sessions” for the Moms and Dads, there was also Aqua Therapy and Yoga for Relaxation. My personal favorite though was

The Bio-psychosocial Effects of a Chronic Condition. The speaker was knowledgeable about trauma as well as the intensity and daily challenges that come with managing a chronic condition. I feel that both my husband and I greatly benefited from this session. We took home tools and techniques that have enhanced our lives, especially in times of stress and anxiety.

When recalling the weekend, we spent at After the Shock, there was a special incident that stood out for me. Dakoda wanted to play basketball, but a group of older kids were in the middle of a game on the court. Dakoda just hopped on and started “playing”. Instead of having him move off the court and wait for a turn like many kids their age would, they slowed down the pace of their game and included him. When I witnessed this, my heart expanded, and I teared up again. I know that most kids with hemophilia and inhibitors have probably been excluded at some point in their lives and instead of doing the same thing to a younger kiddo, they made the point to include him (despite it diminishing the speed and flow of their game!) Every child at camp seemed to exhibit such kindness and compassion and it made me so grateful to be a part of this community.

The final night was special, with a talent show and a wooden wish boat launch to close out the weekend. My boys have already asked me when we can go back to the camp in Pennsylvania. And they’re not the only ones, I can’t wait until next year!