The girl on the right

I remember the day I found out that Gia was going to be a girl. It was a good day. It was the news I was hoping for. I already had my boy at home, and who doesn’t want one of each? Our family was complete, just how I pictured it.

For the next 20 weeks, I shopped for pink.

I couldn’t get enough ‘girl talk’. I welcomed the insight of others, reflecting on their own experiences with raising a daughter – what it looked like, what it felt like, what it sounded like.  Even perfect strangers were ready with their own unique findings and personal observations.

But really, there was nothing unique. Over the weeks I would hear a lot of the same. The differences in raising boys and girls was made quite clear.

“Girls are so much less active and rowdy than boys…”  “They play calmly and quietly.”

“Girls are so much less messy and dirty than boys…”  “They keep things neat and like to be clean.”

“Girls are so much more fun to shop for than boys…”  “They wear pretty dresses and fun little skirts.”

And of course there’s my favorite…

“Girls develop so much earlier than boys…”  “They talk sooner and mature faster.”

Well this was great – I had a plan – I love to have a plan! Before she was even born, I knew exactly who Gia was going to be. So I boxed her up in a pretty little package with a big, huge, sparkly bow on it. She was going to fit perfectly.

It was about three years old when Gia ripped off that bow, punched her way out of the box and dusted off the sparkles.

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Okay. It’s cool. I can go along with this. I didn’t really like bows that much anyway.

So I went with it, but was determined to figure her out.

Hmmm…what kind of box shall I try next…

So I tried every box I could come up with. I tied them with ribbon this time. No bows. Definitely no sparkle.

No, Gia? Okay. It’s cool. I just won’t curl the ribbon this time. It still looks pretty.

But no…

So I moved on to some new boxes, different shapes this time. I’ve got it! Twine! Maybe she’s a twine kinda girl. I like twine. It even comes in pink.

No, Gia? Okay. It’s cool. We can do the brown twine.

But no…

Here we are, two years later, and there’s not a box that could fit that girl. I searched far and wide. It doesn’t exist. As it turns out – she isn’t what ‘they’ told me she would be.

She’s actually so much cooler…

She chose a Spiderman Build-A-Bear – gave it a Minion voice – brought it home in a pink backpack.

When she’s done eating, you wonder if she got any in her mouth.

Her imagination will take her from ‘playing school’ to ‘ninja warriors’. She goes on bear hunts daily – sometimes with a “baby in her belly”.

She changes 5 times a day – I find outfits strewn about the house.

Elsa is her idol. Supergirl is her alter ego.

She hates dresses. Don’t get her started on skirts. But she’ll accessorize a t-shirt and jeans like nobody else.

Her energy never burns – she’s full of second winds.

She lives for the outdoors, the rain, the cold weather, the accessories that go with it.

Hand her a barbie and she’ll tear it limb from limb. Hand her a baby doll and she’ll nurture it like a fragile piece of glass.

She “booty dances” consistently throughout the day.

Her room has to be as pink as I can make it. It’s blinding.

And she has a speech disorder called apraxia. I didn’t hear the word “mom” until she was three years and one month old.

She’s also one of the happiest people I know.

Funny enough, I was a lot like Gia at her age. I decapitated every barbie I owned. I was a messy eater, and walked around with mystery stains on my shirts. I left a disaster everywhere I went. I’d lean back in my chair at the dinner table and fall to the ground, hitting my head – get myself up and did it all over again. I was carefree and clumsy.

I was an athlete. I preferred sneakers to high heals. I felt so uncomfortable in dresses. I probably would have worn jeans to the Prom if I could. Shopping was the WORST. I don’t ever remember liking the colors pink and purple. I was always more of a yellow and orange kinda girl.

But somewhere along the way, I wedged myself back into ‘the box’ – it’s pretty cramped in here.

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See that girl right smack-dab in the middle?

She’s the one looking desperately at her dance instructor for guidance. She refuses to raise her left arm until she knows exactly what it takes to create the perfect Plie. She carefully studies the movement in her head, coming up with every possible scenario that could lead her to failure.

She’s the one that looks confused and a little insecure – but boy is she determined. That girl is motivated. She will nail that Plie if it’s the last thing she does. Nothing will stop her – but boy is she guarded.

She’s the one beating herself up, but refusing to give up. She wants to be the best, but really, she just wants to blend in. But if she doesn’t stand out, she’s doing something wrong.

That’s me. I’m that girl.

I strive to join Gia on the right. She invites me everyday. It looks more fun over there.

 

 

Registering for Kindergarten

I sat on my bed hustling through Gia’s Kindergarten registration packet – parent’s names, child’s name, address, phone number, etc. etc., same old same old…let’s get through this.

Then it came. There it was.

This page wasn’t supposed to apply to me. This wasn’t supposed to be my life. This was other parents. This was other kids. Not me. Not my child.

But it was me. It was my child. It just didn’t feel real.

I’ve had a year and a half to get ready for this moment, but I wasn’t ready. I accepted this reality a long time ago. So why did this feel so new? I felt the same punch in the stomach I did when I found out Gia had apraxia. That same rush of feelings went straight to my gut.

So next to Special Education Services, I set the ball of my pen in the “yes” box. I think I held it there for a full minute. I made my checkmark and burst in to tears. I didn’t just cry, I sobbed.

My husband, Jeff looked up from his desk, “What’s wrong??”. I could barely talk when I looked over at him to respond. I finally got out the three short words that summed up my tears, “It’s just surreal”.

Jeff likes logic. He’s a big picture kind of guy. He likes to fix. You have a problem? Well he has your solution. So he did what he does best and tried to help me through my feelings the only way he knew how. It felt like a math equation – this plus this equals the reason you’re feeling this. So I stopped him. “This is not what I need, Jeff.” I cried. “I just need like 10 minutes to just cry. That’s all I need. I just need to cry, Jeff. Please just let me cry!”

My son walked in to ask his daddy something. I held my breath, looked down and covered my face with my shirt. My husband lead himself and Nicholas out of the bedroom and shut the door behind them. He could see it wasn’t time for solutions. So he gave me what I asked for – he gave me my 10 minutes.

I got under my covers and let it all out.

I cried and I cried and I cried…for about 10 minutes. My tears turned in to sniffles and my sniffles turned in to a blank stare at the ceiling.

There was part of me that wanted to call Jeff back in to hear his math equation – maybe he could fix me.

There was part of me that wanted to call my mom and ask for her words of wisdom – maybe even cry some more.

There was part of me that wanted to call my sister for her empathetic ear – maybe she’ll cry some more with me.

But no. Not this time. How could I possibly explain this ridiculously weak moment? I didn’t understand it myself. It was far too deep for Jeff’s Math, too complicated for my mom’s wisdom and too confusing for my sister’s empathy.

I’ll just have to figure this one out on my own.

Checking that “yes” box brought me all the way back to phase one of apraxia grief – the darkest and loneliest phase of them all. The questions of the future, the fears of the unknown – it was all back. The wound reopened. It was a pain I didn’t ever want to feel again, and didn’t expect to. I was at least two phases past this.

But here we are…the future has officially begun, and the unknown is starring me square in the face. The real worries of apraxia begin on that first day of school.

What will apraxia mean for Gia? Which apraxia recovery story will she be? Will she be the one that graduates from speech at 5 years old, excelling in school without a hint of disability? Will she be the teenager still in therapy, and struggling with dyslexia to boot? Or one of the many scenarios in between?

I don’t know. I hate not knowing. I’m not good with the not knowing.

Come July 25th, I have no choice but to let her fly on her own. But what will she do without me?

Then I look at my daughter and I ask myself, “Does she look worried?”

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No. Not at all. She looks ready to take on the world. She’s beaming with confidence and I’ve never felt more vulnerable in my life. She’s as independent as they come and I feel completely out of control.

Maybe the real question should be…what will I do without her?

I’ve spent so much time building Gia’s wings, never realizing that I was going to need wings of my own.

The next day…

I approached my son, “Guess what, Nicholas?! You and Gia are going to be in the same school next year!”

“What? Really?” he replies.

“Yes! Really! Isn’t that exciting guy!” I said

Concerned he says, “Well…I guess…”

I look at him puzzled, “What’s wrong, Nick? Why do you look sad about it?”

His voice starts to crack, “I don’t know…it’s just…is her teacher going to be able to understand her, mom?”

I smirk a little, “Her teacher will know she has a problem with her speech, Nick. She’ll know that she has to be patient with Gia’s words.”

His eyes well up, “What does she do if the teacher doesn’t understand her? I just don’t get that, mom. How is she gonna learn things? How is she gonna make friends?”

I tried again, “Nicholas, you don’t have to worry about all of this. Gia will be fine. Her teacher will make adjustments for her when she needs to. She can learn the same as the rest of the kids. And Gia has no problem making friends. She’ll be fine.”

He bursts in to tears, “Adjustments?? What does that even mean?? I just don’t get this, mom! Her words are too funny to go to school!”

And then it hit me…

It wasn’t time for solutions.

He didn’t want me to fix it.

So I walked out of the room…

And gave him his 10 minutes.

 

 

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.

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.”

Differently Gifted

I was recently paid a long overdue visit, by a very special friend of mine. Now, when I say that Colleen is a special friend, I don’t just mean that she is someone who is important to me, I mean she is truly, a one-of-a-kind, special human-being. Losing her only child in 2007, Colleen has experienced tragedy, that many of us could never, and will never comprehend.  Her sudden loss had became a marker in her existence, dividing her life into 3 categories: before, during, and after her son’s death. I was lucky enough to have known Colleen during each category of her life. I always knew she was special, but I watched her evolve into greatness! Colleen is not super-human, she went through every stage of grief that anyone who suffers loss will experience. Through each inevitable stage of grief, she made choices that would little by little, change the direction of her life. The choices she made, were a reflection of the shift in her priorities, and the shift in her priorities, was a reflection of her loss. Just days after her son, Scott passed, she made a decision to use her son’s legacy, and create a positive impact in her community. To make a very long, and inspiring story short, Colleen is the founder of SCOTT Foundation, a non-profit organization that provides educational programs to inspire our youth towards selfless service. With the help of many other special people, Colleen was able to create something that she knew her son would be proud of. It was an amazing thing to watch! Continue reading

The Apraxia Angels

Gia’s speech therapist had seen Apraxia in children before, and couldn’t help but notice some of the “typical” signs in Gia. As strong as her feelings were, she regrettably admitted that this was not something she was qualified to diagnose, or even provide therapy for. She explained that this wasn’t your typical speech delay, but that it was a neurological speech disorder, that would require years of intensive “drill” therapy by a specialized therapist. As I held back tears, I asked, “What does this mean for Gia’s future?” With a smile on her face, she replied, “Gia has a bright future!” She felt confident that someday, she will sound just like her peers, and this will all be a thing of the past. In the same breath, she was honest with us, and said this would be a very long road, and our lives will revolve around her treatment. “I’m going to refer you over to a place called The Foundations Developmental House, who specializes in Apraxia”, she said. “They will be able to help Gia”.

My husband and I were quiet on the way home. At that moment, we both needed to process this information on our own. We went to this meeting with very different views about Gia, but left with the same heart-breaking news. I went through a range of emotions on the 15 minute drive home, but as I sat in the passenger seat, staring out the window, I cried silent tears of relief. I finally knew how to help my daughter, my husband and I would finally be on the same page, and I could finally leave the months of denial behind me. Continue reading