Sharing my story (the truth)

Public speaking is scary for a lot of people, for a lot of different reasons. For some people, their fear is so debilitating, that they spend their entire lives avoiding it. For others, it’s a natural-born gift, and they thrive off the adrenaline rush. I would say for me, I land somewhere in the middle. I don’t hate it, but I certainly don’t love it either. The reason that it’s hard for me personally, is exactly that – it’s me, and I’m hard on me. I can be a bit of a perfectionist, a bit obsessive, and a bit of an over-thinker, and those three qualities can be a brutal combination for public anything. Plain and simple, being in the center of it all is just not my thing. I prefer to blend in. After college, most of us leave our public speaking days behind us. Unless giving presentations or speeches is part of your job description, many of us don’t have to worry about all of those eyes starring up at us, waiting for you to say something interesting. Up until recently, I thought I would be a part of the majority, and I was good with that. When you have a friend like Colleen, you will never be part of the majority.

Anyone who follows me on any level has probably heard about my friend Colleen, and her non-profit organization, SCOTT Foundation. If you are new to my blog however, you can catch yourself up on Colleen in two previous posts, “Differently Gifted” and “Speaking up for Gia“. I can promise you’ll hear her name again, and again and again!

Being asked by Colleen to share my story of Apraxia publicly at a SCOTT Foundation luncheon, was both exhilarating and taxing all at the same time. I love taking on new challenges that force me out of my comfort zone, but I equally hate failing at them. I can put so much pressure on myself, that it would be easier to just stay in my own little box that presents no real challenges (but that wouldn’t be much fun, would it?!). These are two sides of my brain that have battled each other since my early teenage years. So of course my first reaction to the opportunity is, “Of course I’ll make a speech! That sounds new and fun!”. Meanwhile, my husband is on the sidelines saying, “Oh god…here we go”. What can I say, he knows me well!

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The people that attend these luncheons are some of the most inspiring and selfless human beings I’ve ever had the privilege of meeting. Like myself, and like all of you, they all have a story. They are the perfect example of how we ourselves can control how our story ends. They have overcome their personal struggles by inspiring change and making a positive impact in their community. I was in such aw of this group after my first luncheon, that I called Colleen and told her I felt a little out of place. She somehow convinced me that I was not only worthy of sitting alongside these wonderful people, but that I was worthy of standing in front of them to share my story. How do you inspire, inspiring people? Well according to Colleen it’s simple, just be yourself! Do you know me but at all, Colleen?

I could have taken my speech in a few different directions, and one of the most difficult parts of preparing for it was deciding which direction I wanted to take. I kept going back to the idea that just one year ago, I would have never thought I would be in this space – a space of peace and acceptance. The world of Apraxia does not breed feelings of contentment, but rather quite the opposite. It’s a world of the unknown, that keeps you white-knuckling the edge of your seat. So how did I get here? Well, that gave me my answer. My story was much deeper than my daughter’s speech disorder, and I was going to tell it in it’s entirety. Essentially saying, here is where I was, here is where I am now, and here is how I got here. Writing that speech was therapeutic and reaffirming. I am there representing “What Would Gia Say?”, but “What Would Gia Say?” wouldn’t exist if it weren’t for the beginning and middle of my story, and I believe that now more than ever.

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Colleen and I right before my speech at the SCOTT Foundation luncheon.

My speech went well! I shared some things that I had never shared publicly before, and never thought I would. Sharing those things was the only real way to tell my true story. If I wanted people to fully understand how I got to this place of strength and optimism, I had to lead people down my path, and my path wasn’t always pretty. Yes, I cried through about half of it. They weren’t happy tears or sad tears. Speaking your truth is an overwhelming release, and that’s really where my tears came from. They were also tears for Gia. Not because of how difficult it is to have a child with Apraxia, but because of everything that child with Apraxia has taught me. Gia is the reason I had the courage to stand up there that day.

From the day I told Colleen about Gia’s diagnosis with Apraxia, there was two things she was determined to help me with: finding peace with my new reality, and raising awareness to the unknown disorder. Colleen regularly puts opportunities in front of me that have the potential to bring about awareness, make connections with others, and encourage personal growth. She leaves it up to me to take the opportunity or not. I’ve questioned and obsessed over every opportunity I’ve taken. but not once have I regretted taking one. I’m extending my path and adding chapters to my story, and that is the key to living a full and regret-free life.

Colleen built SCOTT Foundation from the ground up, not knowing anything about the non-profit community. She now selflessly takes her knowledge, connections and resources to others. She has a giving spirit and never wants a thing in return. Whether it’s someone looking to start a Foundation themselves, or someone who is simply going through a tough transition in their lives, she points them in the direction they need to go. She doesn’t lead them, she guides them. She doesn’t save them, she helps them save themselves. I’ve heard Colleen described as an angel more than once, and there are many people that would say she changed their life. Colleen doesn’t change lives, she changes people, and people change their lives.

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Speaking up for Gia

May 14th, 2015 was our families first Apraxia Awareness Day since Gia’s diagnosis.

I started the day with the posting of my video. It was well received, and seemed to make an impact on a lot of people. I’m confident that my video did what I had intended for it to do. I think it brought comfort to my fellow Apraxia families, and I think it gave others a much better understanding of this mystery speech disorder they had never really heard of. I was amazed by all of the people who showed their support by not only sharing my video, but wearing blue to recognize the day.

Our family of course dressed in our blue that morning, and I got a quick picture with my kiddos to commemorate the day. If my dog could hold a camera, my husband would be in there too :). Nick is holding his IPad and Gia is holding a snack…typical. I love this picture for so many reasons.

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Soon after this picture was taken, my husband and I would be sharing Gia’s story for the very first time in a public setting.

That morning, we were scheduled to speak in Miss Kelly’s 6th grade classroom at Kyrene Centennial Middle School. Our family was to be part of a “Practice of Compassion” service project for these students, which I’ll explain shortly. This amazing opportunity was gifted to us by SCOTT Foundation, a non-profit organization that provides educational programs and experiences that inspire children toward selfless service. In a previous post, “Differently Gifted”, you can learn a little more about SCOTT Foundation, and my dear friend Colleen, who created it.

I met Colleen at the Middle School just as the classes were changing over, so things were a little chaotic. It was a fun kind of chaos that brought back some fun memories.

I was standing just outside the classroom, waiting for my husband, Jeff to arrive. I had asked him a week prior if he wanted to join me, and he happily agreed. Jeff is a pretty private guy, who supports me behind the scenes. Of all the things I involve myself in, I knew this was one he would appreciate being a part of. This was a big deal for me, and he knows when it’s time to step out of the shadows.

I started to feel nervous and unsure as I waited for him. I felt vulnerable without my laptop in front of me. I couldn’t write – I had to talk, and people were listening.

Just when I thought I might throw up, a bubbly 6th grade girl popped out of the classroom and with a sweet little grin on her face says to me, “I hope your daughter learns how to talk soon!” I just looked into her eyes in disbelief. No one had ever put it so innocently and clearly to me before. As adults, we generally don’t use such simple terms. This little girl was telling me what everyone ultimately wants to say, clear-cut and right to the point. It was an amazingly refreshing experience. So I cried a little inside, I may have gotten out a thank you, and just asked if I could hug her.

I took a huge breath of relief. This was going to go better than I thought.

Jeff arrived, and Colleen surprised him with a, “You’re going to be reading a book to the class”. Now Jeff prefers to be the background guy, so he was a little like, “Hehehehe (uncomfortable)”. He hesitatingly agreed, and Colleen happily giggled. I know Colleen well, and I knew what her giggle meant. It meant something along the lines of, “Oh, look how cute Jeff is…he really has no idea what’s about to transpire…”. Meanwhile, I’m standing there in the middle, rambling on like an idiot, “You’ll be fine Jeff. He’ll be fine. You’re good at reading stories. He’s good. You’ll be fine Jeff. He’ll be good. Yep. He’s good at books.” And……….break!

Colleen started the class off by briefing the kids about SCOTT Foundation. Sharing with them the joys of being kind to others.

Jeff was up next, and he was already looking more comfortable. How could you not after listening to Colleen? The story he would read is a book written by Vicki Savini called, “The Light Inside of Me”. This book encourages children towards listening to their inner feelings, and making good choices. It was the perfect ice breaker for us and the students, and so fitting for a SCOTT Foundation occasion.

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Colleen stood up a final time, explaining to the class the service project that they would be participating in. She told them about the little girl named Gia who suffers from a speech disorder. She asked that they really think about what it would be like to struggle everyday just to speak what’s on your mind. I could already see the wheels spinning in their heads.

Colleen then introduced Jeff and I as Gia’s mom and dad, telling them that we were here to share Gia’s story.

All of the students were given a “What Would Gia Say?” postcard, and asked that after they’ve heard from Gia’s parents, to write down their thoughts to this question, “If Gia could say anything, what do you think she would say?”. This would be their selfless service – giving a voice to a child with apraxia, and providing comfort and forever memories to her parents.

All eyes were on me. These were 11 and 12 year old kids, and It was my responsibility to explain the complicated disorder, as well as the feelings that come with it. I had no idea what to expect from them, or how they would take to me. I had no real plan, I just started talking.

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I proceeded with Gia’s story with Jeff by my side, popping in from time to time. Jeff surprised me by sharing more of the emotional side of apraxia than I did. He was opening his heart to these students, and I felt myself doing the same.

The more we talked the more I realized that these kids were actually listening. They looked curious and concerned. Toward the end of our talk, it was clear. These students truly understood Gia’s struggle. They had questions, lots of questions, great questions! They were the kind of questions that took thought and care to come up with.

The time came for their Practice of Compassion. If Gia could say anything, what would she say? Without a wink of hesitation, they started to write. It was emotional just watching them. Gia was just a name, she was just a face on a postcard, just a story. None of that seemed to matter to them. They wrote like Gia was their sister.

It was time for the most anticipated moment of the morning. One-by-one, the students would stand and read aloud, giving our daughter a voice, telling us what it was she wanted to say.

I was no where near prepared for what I was about to hear.

The first student stood up and read us her thoughts. I just remember being shocked at what she said. Her words were so much deeper and so much more thought provoking than I ever imagined a 6th grader could be. It was so unbelievable, that I couldn’t even cry. I was just sort of stunned.

She walked the postcard up to Jeff and I, we posed for a picture, and she picked up her signature SCOTT Foundation pillow pet.

What this girl had to say was no fluke, it just kept getting better. Not only did they take the time to share what they think Gia might say, but almost all of them took the time to write their own words to Gia herself. It was amazing.

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After the class ended and the room was starting to empty, I looked over to see two girls still sitting and writing. They ran out of room on their postcards and got a piece of paper from their notebook. They weren’t worried that the bell had rung, they weren’t stopping until they were done. The letters they wrote were specifically addressed to Jeff and I. They had taken the time to write to us, Gia’s parents, filling us with love, support and encouragement. My heart was so full, I couldn’t even take anymore.

I could never truly describe the time I spent with Miss Kelly’s class, or how it made me feel. It’s something you can’t put in to words. They gave me one of the most special gifts that I’ll probably ever receive. It was one of the most pure and genuine experiences I’ve had in my life.

They empathized on a different level. It was on a level that adults can’t understand, because we’ve just been here too long. These 6th graders are still new to this world, just trying to find their place, just trying to fit in. They want Gia to fit in too. Just the thought of this three year old girl struggling with being different, affected them. These kids gave me hope. They made me feel better about Gia starting school someday.

All we ever hear about is the bullies. Kids like this don’t make the news. I didn’t even know that this kind of good could exist in kids who are growing up in a world with a whole lot of bad.

I will share these postcards with Gia some day, taking them out during different phases in her life. There will come a time when Gia’s therapy days are over, and this is all a thing of the past, but Apraxia will always be a part of Gia, it will always be with her. These little gifts we receive along the way will be comforting reminders of the countless people that were fighting for her voice to be heard.

So you can experience even a little of what Jeff and I did, I took some shorts clips from what the students wrote, and listed them below. Enjoy!

What Gia would say…

“One day my light will shine bright”

“I am normal, I am like any other child. I’m just a little different, but that’s ok. Different is amazing.”

“Things happen for a reason, and I will overcome my challenge.”

“My light inside of me shines with ideas and thoughts.”

“Thank you for not giving up on me.”

“People will know what I’m thinking, one day it will happen.”

“Thank you mom and dad, for working just as hard as I do.”

“Thank you mom and dad, for accepting how I choose to express my feelings.”

“Don’t take speaking for granted.”


What they would say to Gia…

“Even though I don’t know you, I love you.”

“Gia, you are beautiful and you can do anything.”

“You are a fighter.”

“Being different is good, no one wants to be ordinary.”

“I would accept you as a friend.”

“You are special, that makes your personality.”

“Chase your dreams and they will come true.”

“You are perfect and hardworking”

“If you need help, we can help.”

“I love you.”

“Gia, you are unique and beautiful.”

Apraxia Awareness Video 2015

Awareness-Day-Logo-4Today is a special day. It’s a day that just one year ago, I would have never recognized or even known existed. Today is Apraxia Awareness Day.

On May 14th, 2013, the Childhood Apraxia of Speech Association of North America (CASANA), celebrated the first ever Apraxia Awareness Day. This was a victory for families of Apraxia, to have their child’s struggles finally be recognized. These kids are fighters.

No matter what the day of awareness may be, It’s a time to educate and inform ourselves and others. Every year that goes by, there will be misconceptions to unmask, new statistics released, the latest treatments available, and so much more. Never again will I scroll through an Awareness Day announcement on social media, without googling and learning more, and I would challenge everyone to do the same. We help ourselves, our children, and our community when we educate ourselves.

CE66joiUIAAHN4-To recognize my first Apraxia Awareness Day, I put together a special video with the help of just a few of Gia’s biggestsupporters; her family. Through this video I hope to bring comfort to families who are fighting the Apraxia fight, and open the eyes and ears of those who are not.

A very special thank you to Gia’s Aunts, Uncles, Cousins and Grandparents who participated, and of course her daddy. Gia will thank you all someday.

Another thank you to Tori Starling of Jakes Journey with Apraxia, for featuring Gia today. Tori’s blog is the inspiration behind What Would Gia Say, and I would encourage everyone to see how far Jake has come in his journey. He gives me hope.
http://jakes-journey-apraxia.com