Our family looked forward all year to returning to Camp Bernie for what would be our second time. We had such a great and poignant experience during last year’s camp and really couldn’t wait to return. Nonetheless, we nearly got back in our car and started home within 10 minutes of our arrival.
While I haven’t seen the photo the NJCTS staff likes to take of each family on arrival, I can only imagine it images us somewhere between Munch’s Scream and Charlie Brown at the moment Lucy yanks the football.
My son, Ethan, 11, who has Tourette Syndrome, ADD and an consistently disruptive OCD, was experiencing a barrage of mental and motor tics and refused to stand with us for the picture. We comforted, cajoled, muscled him, to no avail and, given the stress of the moment, I couldn’t actually tell you what finally brought him into the line of view for the camera.
Not unlike other kids with TS, Ethan doesn’t take well to transition or a break in his routine, even if it means Camp Bernie, an amusement park, boardwalk or any other activity that has pure fun written all over it. Take the excitement he was feeling, couple it with a change in routine and our mandate of posing for a picture, and we’d created the perfect tic storm.
Thankfully, we scotch-taped Ethan together and stayed for the weekend’s events because there were SO many things we would have missed had we gotten back in the car and gone home — the most important of them may have been meeting another camper who admitted almost getting back in his car and leaving, too.
He was 25 years old, diagnosed with TS in his mid-teens and came to Camp Bernie with his mom and wife of one month. He had not come looking for a support group, information sessions or to bond with others like himself, but instead out of a genuine curiosity about how he might help.
Sitting with the Rutgers clinical staff, we all told our stories of living with TS and, when it was his turn, his mom spoke about the difficulties in his childhood, trouble in school and his struggles with anxiety and tics.
We all thought of our own kids who are going through so many of the same things. And then he spoke about his tics not only now, and how he still has good days and bad days, but how his passion for playing music, singing and surrounding himself with good people has helped him greatly.
For my husband and I, having this man and his family there was an indescribable comfort, for so many of our days are spent worrying whether our son will be able to have a normal life despite his TS, whether he’ll be happy despite his debilitating mental tics and OCD, and whether our relationship with him will come out stronger on the other end.
And this man and his family showed up at Camp Bernie seemingly as a good omen to us — a true-life sign that things do get better. And now, he and his family are an extended part of our family, and we are in touch and will stay so.
So after a rough start, Ethan and his sister enjoyed the many camp activities tremendously. We were able to catch up with friends we hadn’t seen since last year, visit with NJCTS staff members — our constant and unwavering support system — and we now CAN’T WAIT until Camp next year, when there’ll be NO chance of our leaving early.
Read more about the 8th annual New Jersey Center for Tourette Syndrome Family Retreat Weekend at YMCA Camp Bernie: