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.
Hallie has been my teacher and my mentor. I could not have asked for a better one. She lifts and inspires and enlightens others like no one I have ever known. Hallie is a beacon of light and integrity, and I delight in sharing her with as many people as I can. I believe that is why she has been gifted with TS.
Hallie is still young — at only 14 years old — and has much more evolution and self-actualizing to come. Yet, even at her age, she expresses a maturity and self-awareness that is extremely rare, and it arose from her experience with TS. When I think back to how awful I felt for Hallie and for myself (ugh!), I happily release the guilt and shame. Interestingly, Hallie never felt any of this at all.
She has taught me that even if people do stare at her for her tics (and her beauty of course!), they ARE seeing her for who she truly is — tics and all. Her tics and her compulsions are integral to who she is, and she has never been afraid to show it and talk about it. I was the one who was afraid and embarrassed (ugh, again!).
Yes, Hallie has learned to hold in her tics at times when she is performing, or deep in discussion with someone. And she did admit how wonderful it felt to attend the Leadership Academy and not have to utilize any energy to hold in her tics. What a relief this was for her. Regardless, though, Hallie epitomizes how it is to live and relate to others without any masks and with complete authenticity. I am practicing this.
When I picked up Hallie from Rutgers on that Sunday, I could not wait to hear all the details. I knew this experience would be life-changing. The moment we got in the car, Hallie said, “This was the best weekend of my life!” It did not surprise me. What could be better than spending three days with others who share similar challenges, if not exactly the same?
Hallie had never been with so many others with TS — particularly adults with TS. She had so many questions and was so eager to learn from them. I can only imagine, given how much Hallie has blessed me, and our family and her friends, that she was an inspiration to her peers and other individuals who attended the Academy. It seems Hallie is driven to be a role model and mentor for others, and I look forward to seeing her unwrap and share even more of her uniqueness and her gifts!
The Tim Howard NJCTS Leadership Academy was pivotal for Hallie, and I sense this is just the beginning for her and for her fellow Academy participants and coaches as they embark, or continue to embark, on their journey as confident leaders raising TS awareness for themselves, their families and their communities.