Words cannot express how grateful I am to Tim Howard, Melissa Fowler and everyone at the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for my daughter Hallie being given the opportunity to participate in the Tim Howard NJCTS Leadership Academy on August 1-3 at Rutgers University.
To be included in the first incarnation of this academy was so gratifying, meaningful and life-changing. I view Hallie as a pioneer at times — as she navigates her journey with TS — so it is truly fitting that she was able to join with other pioneers to excavate a path for others who share similar challenges in their lives.
Despite the fact that Hallie has spent very little time away from our family, I had no worries about dropping her off at Rutgers to begin that special weekend. In fact, as I got in the car, I felt an overwhelming sense of comfort, and I welled up with tears of pride that I felt for Hallie — a sense of pride that I don’t think I had ever felt before. I can feel it now again, as I am writing this. I suppose it comes from witnessing my child grow and evolve in ways that many adults have not yet achieved, and may never achieve in this lifetime.
I can still remember the first time I noticed Hallie’s TS symptoms (although friends noticed it even sooner, and in hindsight, I had already seen many associated symptoms). We were at the NJ Renaissance Fair, and she was 6 years old — just about to enter first grade. As Hallie was enjoying observing the Renaissance Fair actors delight in a game of human-sized chess, I was busy observing her intense blinking, and her tongue protruding out of her mouth as she opened her mouth every 20 seconds or so.
I was not the only one to notice. There were others watching her — and to me, it felt like everyone there was watching her. Although this was certainly not the case. In that very moment, I felt like pitying her, and admittedly, myself. How horrible is that? I actually felt bad for myself. I just wanted to take it all away from her, because I sensed in that moment that this was not a phase and may be something she was going to have for a very long time, if not her whole life. I thought that people would be staring at her for the rest of her life and may never see her for who she truly is.
It is now 8 years later, and many, many motor and vocal tics have come and gone, and many other associated symptoms that have been even more debilitating have waxed and waned. I also have another daughter who has experienced much the same as Hallie — yet even much worse in terms of intensity. It has been quite the roller-coaster ride.
Throughout all of these challenges, I have experienced my own growth and evolution. I have moved through the pity and self-pity. I have moved through the guilt and shame — and blame — that came later. I can save that for a future post! For now, I will simply express that by seeing Hallie transform her adversity into a blessing, she has blessed me, and shown me how to do the same in my life.