Passing the Torch
Updated: Apr 19
Today I had the opportunity to share our family’s story, of raising children living with disabilities, with a group of graduate Occupational Therapy students at Gannon University. This is something I have done for nearly 14 years now, but today it took on a more special meaning, Neeley joined me in the speech. In fact, it is because of Neeley’s guest blog article, The Heart of a Champion, that Tina from Gannon University reached out to me. Tina was one of Halle’s OT’s from her younger years. I have kept in touch with her, via Facebook, and she reached out after reading Neeley’s article and asked if Neeley would be open to share her story with some of her OT students. Neeley was a bit hesitant but agreed to be a part of a speech if I took the lead.
Well, let’s just say, Neeley could have done the entire 2-hour speech on her own. I have to laugh about it now, because before we logged into the zoom session, Neeley showed me her four bullet points and told me when to introduce her and when to take the talk back over. She even had a game plan if she panicked, and we went over how I would fill in if she needed me to. I kept telling her she would be fine, but as this was something she had never done before, I understood the nerves. On top of the typical nervousness, Neeley has to deal with spikes in epinephrine that can throw off her P.O.T.S. in situations like this. She spent the morning hydrating and thanked her lucky stars this was a zoom session rather than face-to-face presentation. This way she could sit down the entire time and her risk of passing out was significantly decreased.
Back to today, after my introduction and my stories on Halle, we took a quick break before I would talk about Neeley’s early years and offer a summary of her various diagnoses and then she would jump in briefly – well that was the plan at least. On the ten-minute break, after the first hour, Neeley turned to me, squeezed my hand and said “I can take it from here. I got this one.” And that she did, and I couldn’t be more proud of her.
I was proud because today, she became a 4th generation public speaker in my family. I am proud because she faced her fears and spoke to 30+ graduate students with minimal hesitation. I am proud because she allowed herself to be vulnerable and spoke openly about what life is like living with several invisible disabilities as a teenager with such rawness and such honesty. She spoke on everything from her medical diagnoses to the loss of competitive sports to the challenges with friendships and even the highs and lows of dating when you have disabilities. But most of all I am proud that she used her voice – shared her story to guide the next generation in patient care.
There is another reason that today was so meaningful to me. When Halle was dying, she was so worried people would stop saying her name. In fact, I started this foundation to keep Halle’s name alive by working to 1) educate medical professionals on the human side of medicine, 2) support families with children living with chronic illness, and 3) empower kids who are living with a disability or chronic medical condition. I have always known I will carry that mission out until the day I die, but in the back of my mind, I wondered what would happen to The Halle Grace Foundation once I am gone. Today, I realized the mission of this foundation will continue to grow under Neeley’s hand.
Today, I was able to Pass the Torch to Neeley and let her find the ways in which she will work to educate others on pediatric disabilities and work to break down the stigmas associated with chronic illness. Today she shared her story and kept her sister’s name alive. Neeley's goals may be a little different or they may stay the same – either way she shared her story and put a face with her disability.
Cheers to you kid! Keep up the good work! Halle would be proud. I know I am!
Sidenote: we are toasting with sparkling cider. :)
If you teach in a medical program or preprofessional program and are interested in having the Halle Grace Foundation share with your students, please contact me at firstname.lastname@example.org