Famous Faces Walk for Apraxia in L.A’s Walk to Talk!
It almost seems crazy now, but just 3 years ago Apraxia didn’t have a face. There was not ONE well known person who had fought apraxia and overcome. I was an SLP before my daughter was born and I can tell you after she was diagnosed, even though I was an SLP, the fear, worry, and guilt that gripped me hung onto me and wouldn’t let me go.
It haunted me. It would keep me up at night.
I would scour the internet but I could not find one famous person who had apraxia. Stuttering has faces. Dyslexia has faces. Down syndrome has faces. Autism has faces of successful people living their dreams, but apraxia? Nope.
The fear in my heart would threaten to overtake me at times.
I remember wishing and praying with every ounce of my being that apraxia had a face. Not even a spokesperson, but JUST a face that I could look at and say, “hey, that person had apraxia and look at them now.” I tried to follow the advice of Ghandi who said “Be the change you wish to see in the world,” and I started my blog and my facebook page in an attempt to spread awareness. I could have never dreamt or even prayed that awareness would come after I would read a Rolling Stone Article, an article whose first paragraph read like a case history for apraxia; and I would find myself standing in the rain that very night with my daughter waiting to ask Ronda Rousey if the speech impediment she had when she was little was in fact apraxia.
Since that time I have now met many, many faces of apraxia and I have found many of them in the unlikeliest of places. Mikey from Mikey’s Wish is one of them. This 16 year old boy from the UK started a Facebook page around the same time I started mine, and he is probably one of my favorite faces who is always doing and writing amazing things and encouraging Ashlynn.
This past weekend I once again packed my daughter up in tow on a wild adventure to go to L.A.’s Walk To Talk for Apraxia to benefit the Childhood Apraxia of Speech Association of North America. Unlike the time I drove across town during rush hour and waited in the rain to see Ronda, this trip had more merit. Ronda Rousey was confirmed to be a guest speaker and I knew if I didn’t go I would forever have regretted it.
Upon arriving at the walk, we happened to park our rental car next to my fellow apraxia mom and admin to the group Ronda Rousey: #knockoutapraxia, Bree Vanegas who drove down from Inland Empire, California. As we walked to the registration table together, I saw one of my bootcamp apraxia mentors and apraxia SLP extraordinaire Dave Hammer. He had come out from Pittsburgh as a rep for CASANA. His wife Kenda was also there and I was excited to see them. Ashlynn loved Kenda and they bonded while walking around the park petting the puppies.
Making my way through the park I spotted Alyson Taylor of A Girl with a Funny Accent, who I met in San Diego this past summer at the apraxia conference. I wanted so badly for Ashlynn to meet her then but we couldn’t make it work. This time was different and was special for all of us. Alyson immediately dropped to Ashlynn’s level and told her that she too had apraxia. Ashlynn doesn’t always have the words when she’s put on the spot and gripped with anxiety, but I saw the spark and glimmer in her eyes.
As I meandered over to get coffee and check out the face painting station, I saw a cute fluffy white dog. As I looked up I immediately recognized actress Gage GoLightly, who gave a revealing interview about growing up with global apraxia. I went over to introduce myself and asked to take a picture. Ashlynn was shy at first, but when Gage asked her to pet her dog she had Ashlynn hook, line and sinker. Gage was such a real, down to earth, and sweet person. I was immediately struck by her genuineness and her joy at supporting a cause she felt so close to. She laughed about still being severely dyspraxic and practically doing the splits in the shower the other day. I smiled at her story and marveled about just how much she reminded me of Ashlynn and in that moment I knew Ashlynn was going to be okay. How do you thank a person for giving you that moment of peace and comfort when they didn’t do anything but be themselves? It was amazing.
As I was talking to my friend, I ran into the L.A Walk Coordinator Jaclyn Senis who made all of this happen! Meeting fellow walk coordinators is in may ways, like looking in the mirror. We all spend countless (unpaid) hours devoting every second of our spare time to creating an event that is memorable and meaningful to every child with apraxia that attends. This was her first walk, and it fell on her BIRTHDAY! I think that should speak volumes as to the character of people who volunteer to coordinate a walk.
Soon there was buzz Ronda has arrived with her family and supporters. Nervously I made my way across the grass to the tent. I immediately spotted Ronda’s mom, who I instantly recognized from social media. She apparently recognized me or Ashlynn too because she flashed a large smile and waved in our direction. All my nerves disappeared in that moment because I recognized her not as “Ronda’s mom” but as a mom who understood me without ever even meeting me.
As we rounded the corner of the tent, Ronda stood in the middle. When I met her the first time I had no idea who she was, but this time I think I was not only star struck, but amazed she was actually HERE. Ronda Rousey was HERE at an apraxia walk of just a few 100 people and was going to speak. How did this happen? I stared on incredulously. Ashlynn immediately freaked out and got shy. She basically ran away. Haha. Ronda said she had her “balgrin” in the car and asked if she should get it. I immediately said yes and if you don’t know what that is….read her book. It’s amazing!
When Ronda returned with the balgrin, the ice was broken and Ashlynn immediately came up and held it. I marveled at the fact that ALL three adults with apraxia had managed to cut through Ashlynn’s anxiety by finding something to make her feel comfortable with first. Alyson dropped down to her level, Gage offered her puppy, and Ronda offered her “balgrin.” This is home people. When I say I want to find Ashlynn’s tribe…..this is EXACTLY what I am talking about.
The speeches by Alyson and Ronda were both incredible in VERY different but wonderful ways. No two people with apraxia are the same, and as Alyson mused in her blog post, “There’s no right or wrong way, our fights were won in two different ways.”
Ronda, Gage, Alyson, EVERYONE walked the walk around the park. In that moment in this small park in Santa Monica on this fateful day of November 5th, 2017; there was no dumb kid or smart kid. No MMA star or actress. No successful or not successful person. There were just families and their children walking and raising awareness with the shared belief that EVERY CHILD DESERVES A VOICE. On the walk Ronda took Ashlynn’s picture on her cell phone as I talked to Gage and we both remarked at the “goosebumps” we got while talking to each other. Ronda’s mom talked to Alyson’s mom and the humanity of our shared experiences blurred out boundaries of fame, wealth, or status.
There is the expression about pinching oneself to make sure it is real. I literally did this during this moment in time. It was THAT incredible and unreal.
You know, the world is so much smaller than we think. We are all so much more connected than we ever dare to imagine. I’m learning every person, on every end of the country or even globe, famous or not, is walking a journey called life full of love and laughter, but also bumps and pitfalls. The human experience is a shared experience that transcends money, wealth, power, or race. We all have a story to tell, and we are all shaped by our story. We are all souls looking for a connection. Olympian, Judo fighter, author, writer, actress, SLP, teacher, or any other walk of life; our lives take on meaning when we can connect with others who share a familiar story.
What started as a mission for hope, turned into a lesson about life on one sunny day, in a beautiful park in Santa Monica, California.