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.

 

 

Dear Gia

Dear Gia,

Daddy and I just dropped you off – it’s your first day of Kindergarten.

Right about now I’m supposed to say, “That just flew by!”, or “Where did the time go?”. But I’d be lying if I said those words – I’d be trying to blend in with the other parents. We didn’t get to take the path where time flies. Our path was long and uphill, with a lot of rough terrain.

But you know what, Gia? You did it. You earned your spot in that classroom. I couldn’t have done this for you. I couldn’t have gotten you here on my own. I gave you the boat, but it was your job to paddle. You’ve worked tirelessly for every word you have. Every. Single. Word. From therapy, to doctors, to preschool and back – your work never stopped.

And you know something else, Gia? You never complained about it. Not once.

I’ve spent the last two years advocating in your fight to be heard. It’s been really hard. At times it had more ups and downs than mommy could take. But it was your attitude that kept me going. It was your strength that pulled me forward.

Now here I am, sitting in an empty house, feeling a little lost without you. I miss you deeply. My calendar looks so empty. It’s been you and me against apraxia. We’re a team…I feel like I’ve lost my partner.

I’ll be honest though, Gia…I’m a little tired. I could really use a break. A nap sounds kinda nice. A pedicure sounds even nicer. I could use some lunch dates with daddy and some morning coffee with your Aunt Trish.

So today is bitter sweet. It’s a day I’ve both feared and looked forward to.

I did everything I could to get you ready for this moment. But today, as we made our way up to your new school, I couldn’t help but wonder if I had done enough. With your hand in mine, we walked into a classroom full of Kindergarteners. My head was spinning with questions I felt desperate to know the answer to – will your peers understand you? Accept you? Make fun of you? Will you struggle with Reading? Writing? Dyslexia?

Did I do enough?

In your own little way, you brought me peace and turned off all the noise. You looked so at home in that classroom – so happy and self-assured – so ready. It was clear, you were right where you wanted to be – where you needed to be.

So I grabbed your heart-shaped little face, looked you right in those big blue eyes and said goodbye with a kiss. I slowly made my way out the door, watching you as I left. But I couldn’t leave just yet. I needed just one last picture. So with camera in hand, I ran back to greet you at your desk. But you, Gia, you greeted me back with exactly the words I needed to hear…

“Mom, you gotta go!”

I’m so proud of you, Gia. Today is your day!

Love,
Mommy

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Gia has a brother

Gia has a brother…his name is Nicholas.

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In the same month that Gia received her apraxia diagnosis,  Nicholas started wetting his pants. In just two weeks time, Nick went from a once a day oops, to a six or seven times a day habit. It got so bad, that just leaving my house with him gave me serious anxiety. I felt like I was potty training my son all over again; the son that had been potty trained for a year and a half.

Nick’s preschool teachers were sending home a bag of soiled clothes almost everyday he was there. After about a month, his teachers finally spoke up, “Is there anything that’s changed at home? Have you recently moved? Is there anything different going on that we should know about? Anything?”

I racked my brain.

“Well…” I said, “I guess there is something different.”

It never occurred to me that Gia’s recent diagnosis could be the culprit of this dramatic statement that Nick was so obviously trying to make.

I remember my drive home that day vividly. The kids were in the backseat fighting, while I was in the front seat connecting dots.

So many little things about Nick had changed in such a short amount of time. In between all of the pants wetting, there was so much more. My sweet and compassionate little guy had become angry and combative. He cried a lot. He stopped doing the things that got him the positive feedback he normally thrived off of. He almost seemed to prefer negative attention.

Nick didn’t like Gia anymore. Everything about her bothered him. Everything – the way she played, the way she laughed, the way she hugged, all of it. Something about his sister just irked him to his core. Gia is no wallflower. She didn’t put up with a second of her brother’s mistreatment. She fought back and she fought back hard.

My days were spent breaking up fights that had become downright vicious at times. I watched my ‘Irish twins’ go from being best friends to the worst of enemies.

It was one of the most stressful times in my life.

Doesn’t Nick know I don’t have time for this? I have Gia’s apraxia to worry about!

Just days after my conversation with Nick’s teachers, and still under my cloud of apraxia grief, I walked in to the lobby of FDH with both of my kiddos in tow. It was just another day, just another speech therapy appointment. A family followed in behind us, and in typical Nick and Gia fashion, they made a beeline for the two kids. The kids were a little shy, so the mother quickly spoke up and said, “Hi there! What’s your name?”. Nick jumped in first, “My name is Nicholas”. The mother’s body language then turned to Gia. Just as I was preparing to explain why Gia wouldn’t be participating in the conversation, Nick wrapped his arm around Gia’s shoulder and pulled her close.

“This is my sister, Gia. She talks a little funny. You have to listen very very carefully, and you have to be very very patient.”

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I had spent so much time in my head, going over what I might say in this inevitable situation. Nick’s spontaneous explanation was so innocent but perfectly executed. I couldn’t have said it better myself. He taught me something that day. His words made such an impact on me, that I featured his statement in my apraxia awareness video.

I never explained Gia’s apraxia to Nick – after all, he was too young to understand.

I never coached Nick on what to say in this situation – after all, he was too young to understand.

I never demanded that Nick speak up for Gia – after all, he was too young to understand.

But was he too young to understand?

He showed me in that moment that he knew more than I ever gave him credit for. Which meant he had all of the feelings that went with that knowledge. His life had changed too. He was grieving the same as I was. His grief just came from a different place, a different perspective. The shift in our house was immediate and dramatic, and he felt it. He felt it all.

He was listening to me talk about Gia. He was riding to therapy for Gia. He was seeing me cry over Gia. He was watching me write about Gia. He was hearing my husband and I argue about Gia.

That day in FDH was a turning point for me. I knew Gia was going to be okay; that Nick would protect her, always. But I needed to protect Nick. It was my job, my obligation to create balance in my home again. Somewhere that Nick would feel safe, confident and important. Nick had joined me under my cloud, and it was my duty to lead the way out.

It was time to parent more consciously.

If Nick is talking, I listen. If Nick does something good, I praise him. If Nick helps me, I thank him. I try to be more present, make more eye contact. We get him involved in Gia’s speech therapy at home. We set aside alone time, just him with mom or dad. We give him positive reinforcement and reward him for good behavior.

So things got better. Then they got worse again. Then they got better. Then worse again. Then better. Then worse. You get the picture.

It’s been a little over a year since ALL of our lives changed. Nick’s struggle to adjust to apraxia life continues. His feelings toward his sister ebb and flow. Some days he embraces Gia, helping her with hand cues and sounding out words. Other days he loathes her, screaming that he “hates her words”. I tear up just writing that.

He resents her apraxia, but doesn’t want her to make progress. It’s confusing but it makes so much sense. Gia doesn’t need his help like she used to. She can introduce herself now.

So what is it that Nick needs, to feel like his value is the same as Gia’s apraxia? I still don’t have an answer to that question. Nick is just trying to find his place in all of this. What he needs may just be time.

Nicholas Tufano is one of the neatest people I know. There is something so special in his heart and in his mind. He is a deep, emotional and highly sensitive human being. He’s very intelligent, and that intelligence makes him complicated. So. Very. Complicated. He’s a genuine soul – like no one I’ve ever met. Sometimes I want to fast forward, just for a day, just to see who he becomes. That kid brings me so much joy. He’s my first born. He made me a mom.

If only he knew.

Nicholas has a sister…her name is Gia.

View More: http://molliecostleyphotography.pass.us/tufano15

 

A new year, a new Gia

I knew it when I saw it. This was it. This was my cover photo. This was the picture that would introduce Gia to the world. The picture that would unveil my less than perfect reality.

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I love this picture. It’s beautiful. But it’s so much more than that – it’s symbolic.

This photo was captured just two weeks before Gia’s diagnosis with Childhood Apraxia of Speech, during what could only be described as a disaster of a photo session.

I remember it like it was yesterday. The fall family pictures of 2014. You know the pictures – the ones you need to go perfectly so you can send out the perfect holiday card that looks like everything went perfectly. Yep, it was those pictures.

So on October 28th of 2014, we drove to the perfect setting, dressed in the perfect outfits, to meet the perfect photographer. It was going to be just perfect!

As soon as Gia stepped out of the car, it was like she stepped on to another planet – Planet Overdrive. She was so distracted by everything around her, that you couldn’t get her attention for anything. She wanted nothing to do with us, the camera, or even an ice cream truck if it drove by. The entire session became a broken record of, “Gia! Gia! Gia!”. Nothing. We had no control over her, and she seemed to have no more control over herself.

Well there goes my perfect holiday card.

I left holding back tears. Had I completely failed as a mom? Was I raising an undisciplined, out-of-control brat? Or was her behavior symptomatic of a bigger problem? But what problem?

The apraxia news came shortly after, followed by the “suspected” Sensory Processing Disorder conversation.

My world imploded, but it suddenly made sense – beginning with our family pictures. It was one of many lightbulb moments to come. You can’t ask a child with untreated sensory issues to join you in an unknown environment, with a camera in their face and everyone shouting their name. You just can’t.

It was one year ago that I wrote my first post,  Apraxia? What’s that?, and What Would Gia Say? was officially born. When it had come time to choose the cover photo for my blogI turned to my imperfect fall family photos.

In a sea of perfectly unposed “candid” shots, there it was – the perfect picture.

It was a flawless representation of Gia at the time. She was like any other three year old that was ready to talk, but she couldn’t, and she didn’t understand why. This picture shows her struggle. I see a little girl who looks vulnerable and insecure, who’s confidence is depleting. She even looks a little lost, a little scared. When I look at this picture, I can see her, she’s in there. She’s a beautiful flower that’s just waiting to bloom.

I remember standing behind our photographer as she took this picture, desperately trying to get Gia to look, smile, pay attention…anything! I pleaded with her to get that scarf out of her face and stop covering her mouth. If Gia had listened to me, this would have been a pretty picture, but not my cover photo.

Here we are today. It’s a new year, and a new Gia.

The little girl you see in that black and white photo is not who Gia is today. So that beautifully imperfect picture has been retired. It makes me sad to see it go, but so grateful for what it means to leave it behind. What that picture represents now is so much deeper, and something only I, as Gia’s mom will ever really understand. It will forever be special to me.

So for my regular readers, I’m sure you’ve noticed – a new cover photo, and a lighter and brighter blog!

On October 3rd of 2015, I gave those fall family photos another try, only this time around, the word perfect had taken on a whole new meaning. You might call it, perspective. I simply hoped for the best, and the best was whatever Gia could give me.

Once again, I left holding back tears. Did that really just happen? Was that my daughter? Has she really come this far? Made that much growth?

Gia was happy, confident and controlled. She was completely in-tune with us and the reason we were there. Her environment was secondary, and she looked comfortable in it. Not only was she excited to take pictures, but she TALKED about getting them taken. It was a dream.

I was so proud of her.

Needless to say, I had a lot of pictures to choose from. My husband and I both agreed, this was the one. The new cover photo. The new Gia.

View More: http://molliecostleyphotography.pass.us/tufano15

This picture spoke to me much like the other. It fully embodies Gia and the stage of apraxia that she’s in today. I’ll let you use your own interpretation of why we might have chosen this particular photo (I’d love to hear what it is).

I’m going to end this post and start a new year with the famous words that every apraxia parent has or will at one point utter – she has come so far, but she still has so far to go.

What Would Nathan Say? – Meet Kelly

by Kelly, Contributing Writer

Our beginning has been nothing short of rough. I was induced with Nathan one week after he was due. He appeared to be a healthy 7.12 pound baby. Unlike most other babies born with Cerebral Palsy, he wasn’t premature nor did he require any oxygen after birth.

Within an hour of being born, my gut told me something was wrong with Nathan. He would latch while nursing, but within seconds he would pull off and scream. After nursing my first two kids, I knew what I was doing and just felt something wasn’t right. This cycle continued for over 12 hours. I repeatedly told the nurses, he won’t stop crying there must be something wrong.

A year later, after I requested all of his hospital records, I would learn that those nurses were making notes in my chart that I was making no attempt to comfort him. I sure would love to give those nurses a piece of my mind. Had they really listened to me instead of making judgments, Nathan might not have suffered so much in his first year of life. After exactly 24 hours in the hospital, I asked to please leave as I felt there was nobody there helping me anyway.

Those first weeks were harsh and scary. The nursing problems continued. Nathan developed what the doctor called breastfeeding jaundice. He was so yellow; I have a hard time looking at the pictures of him like that. After several appointments and telling the pediatrician my concerns, he said Nathan was failing to thrive.

We took him in for weekly weight checks until he started to put on more weight. Nathan spent most of his days crying for hours. I was told by the doctor it was colic. His exact words were, “once he is 3 months old he will be perfect”. Again, the words I’d like to tell him now are very colorful!

After 3 months of doing everything possible to get Nathan to nurse, I quit. This broke my heart, as I knew how much he needed it. He took to the bottle much easier than he did nursing. We thought our problems were behind us, they weren’t.

Nathan developed extreme reflux. At about six months old, I decided to start him on solid foods. There seemed to be something off when I would feed him. Every time I put the spoon in his mouth he would also shove his hands in his mouth. While this is somewhat typical, he did it excessively. It was more than what was considered normal. So finally at 8 months old, Nathan started Occupational Therapy for feeding.

Everyone from friends, family, and doctors were telling me he will be fine. I honestly felt deep down inside, there was really something wrong. Hearing everyone’s reassurance just made me feel like I was crazy.

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While Nathan did sit up at the right age, he wasnt hitting any other major milestones. At 10 months old, he started physical therapy in addition to occupational therapy for issues outside of feeding. By the time Nathan was 1 year-old, he wasn’t crawling or walking. To me that justified, there was in fact something seriously wrong.

Nathan never really babbled, nor did he ever put things in his mouth as all babies do. Still, everyone in my life said he was just a “late bloomer” and he’ll catch up. As months passed, he didn’t. In addition, his head size began to fall off the charts. Head size says a lot about a child. Too big or too small is sometimes a red flag for concern.

In March of 2012, Nathan was sedated and given an MRI. Weeks later, his neurologist told me over the phone, that Nathan had a slightly enlarged right ventricle and decreased white matter. He then proceeded to tell me that this would fall under the umbrella term of Cerebral Palsy. Anytime there is an abnormality of the brain it can be classified as such.

There it was, the explanation I thought all this time had existed. As I researched the Internet for Cerebral Palsy I came to the realization that Nathan wasn’t the typical CP case. By this time he was already walking and his muscles didn’t seem to be that weak. To this day Nathan doesn’t appear to be a typical CP kid, as he has never been impacted by a muscle related issue. So I guess that’s one win. I did gladly accept the diagnosis, as this new label opened the door for him to receive more services.

After a year of weekly therapies, it was clear Nathan wasn’t making any improvement in speech. During a recheck with his feeding therapist, she mentioned Apraxia and asked me if anyone had ever mentioned that. Back to the researching I went. When I read the description of Childhood Apraxia of Speech, I knew this was what Nathan had.

The couple words that Nathan had, he would lose for months at time. That symptom of losing words really stuck out to me. The writing was on the wall; it wasn’t the Cerebral Palsy stopping him from talking, it was the Apraxia.

I went on to find the most trained and seasoned SLP for Apraxia, that was somewhat close to our area. We’ve been seeing her four times a week for two years now. Nathan is one of the most severe cases she has ever treated.

Even with years of treatment, Nathan still can’t talk. As he has hit the age of 5, the chance of him ever having speech as his primary form of communication is quickly dwindling. Every day is battle. Im sharing Nathan’s story because I want to let parents of other little warriors know that they aren’t alone. Not everyone’s fight can be won but we won’t give up trying.

What did you say?

Gia is almost always the first one awake in the Tufano household. She is the ultimate morning person. Her light is so bright when the sun comes up, as if she slept away the frustrations of her everyday life. She wakes up forgetting her struggle for words, and her insatiable desire for sensory input. She’s the purest form of herself in those early hours; her mind is restored, her body is refreshed and her soul is renewed.

By 6:00am, Gia is ready to take on the day, and she’s taking me with her whether I like it or not. Every morning she sneaks quietly into our room, looking for early morning company. She’s like a tip-toeing bandit on a mission for mom. I wake up to her big blue eyes and single-dimple smile looking up at me, just itching for an invitation in to bed. So I scoot my sleepy butt over, she crawls under the covers, and so begins our very predictable morning routine.

I get about 10 minutes of cuddle time with Gia before the inevitable question arises, “Bekfast?”. Her stomach wakes up as early as she does. So with one eye open, I follow her lead to the kitchen. “Mom, how’s you seepy day?”, she says to me.  What Gia is of course trying to ask me is, “How did you sleep last night?”, but her brain has not yet been able to process and express the common phrase accurately. This is a perfect example of Gia finding a way to replace typical language, but still get the same point across. I don’t correct her, because it’s freaking adorable! She’ll correct herself in time, and until then, I’m enjoying these words for what they are.  This simple greeting is like a daily reminder of how far she’s come. I’ve actually thought a lot about that inevitable morning that Gia greets me with, “How did you sleep last night?”. It seems strange to say, but the thought of it makes me kind of sad. As much as I want her to talk like everyone else, I’ll miss this phase in her journey to normal speech.

When we reach the kitchen, Gia will typically make one of two standard requests, “cereal!” or “waffle!”. These are her go-to breakfast foods, and this is exactly how she asks for them. One word and straight to the point. This is another example of the phase of speech that Gia has reached. In many of her statements and requests, she’ll use a single word that makes her point, and makes it quickly. It’s the word that makes the most impact, and provides the highest likelihood of success. Success = being understood = happy girl! She has spent her 4 short years of life navigating through the English language, looking for her sweet spot, and she’s found it! This is an essential stepping stone to Apraxia recovery, and a big accomplishment for Gia. As nice as it’s been to have a less frustrated child, it can also make for a less motivated child. This phase of recovery has been the most difficult to break through thus far. We need to recharge Gia’s brain to welcome the next phase, and not fall back on what feels comfortable. This is a big focus in Gia’s therapy right now; extending her one word, to a simple, three-word sentence. like, “I need shoes”, or “I want ball”. She says these with ease on command, but has not been able to apply them to real life (classic Apraxia). Instead she’ll say, “shoes”, or “ball”, and I fill in the blanks.

On a recent early morning that was not unlike the rest, Gia chose “cereal!”. So I opened the pantry as she sat at the counter waiting. Before I could even reach for the box, I hear, “Mom, I want cereal!”. I turned to look at her, “What did you say?”. She starred at me. “What did you say, Gi Gi?”, I repeated. Now with a smile on her face, “I want cereal…pease.”.

What can I say? It was just one of the moments – a moment I will remember forever. We had been working toward this moment for months, and I was watching it break through. I just looked at her with tears in my eyes, and she smiled at me with pride; she knew! I took her over to the couch and squeezed hugs into her on the way. We sat together and talked all about her accomplishment. She said a lot of gibberish while I gave a lot of praise. There were kisses, hugs, tears and giggles. We celebrated in a way that only the two of us could really understand.

Gia will read my blog someday, and I keep that in mind every time I write. I don’t need her to know every detail of her rocky road to normal speech, I just need her to know that she fought for the life she has. I want her to see it for the rollercoaster that it was; from the slow upward climbs, to the sudden stomach-turning dips.

Just as we finished our victory celebration, we heard the predictable little footsteps and yawns of my son coming down the hallway. Gia jumped off the couch and ran to greet Nick…”Hi Nick! How’s you seepy day?”

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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.”

Quitting my job

I remember the day it happened, the day I knew. It was Friday, March 20th to be exact. I got off work at 5:00 and headed over to Nick and Gia’s preschool to pick them up for the day. I walked in and did my usual scan of the room, looking for the blonde-haired, blue-eyed children that look nothing like me. Nick and I locked eyes right away, and he greeted me with his typical, melt-my-heart “Hi mom! I missed you so much today! I didn’t pee my pants!”. My typical response followed, “Oh Nicky, I missed you so much today too! I’m so proud of you for not peeing your pants, but you do know that’s pretty normal right?” Now usually by this time Gia is right there with us, giving hugs and kisses, using her own special words to tell me all about the day. She was no where in sight. I took another scan of the room, and called out her name several times. She slowly popped her head up from behind a shelf, and I was shocked at what I saw. She looked like a disaster of complicated emotions. She looked sad, she looked weak, she looked angry, she looked tired, she looked discouraged, and she looked defeated. My eyes welled up as soon as I saw her. There was pain and struggle all over my daughter’s face, and it made my heart hurt. I glanced up at the teachers, looking for some kind of explanation. Before I could ask the inevitable questions of concern, the director approached me with the obvious, “She had a rough day”. Continue reading

Gia’s First Progress Report

Most who know me, know that I just love a good goal! Whether it’s a half marathon, or completing a beautiful wall collage, I thrive off of accomplishing something. When I learned that goals would be set for Gia’s therapy, and every 13 weeks, reflected in progress reports, I thought, “Great! This is right up my alley!” Boy, was I wrong!

Shortly before I was due to receive Gia’s first progress report, a slight bit of panic set in. The anticipation of what this piece of paper might say, was driving me mad! My head was consumed with anxiety-filled questions, “What are Gia’s goals? Has she met them? What if she hasn’t met them? What does that mean? I know she’s improving, but is it enough?” On one magical afternoon, our SLP, Anna-Alyse emailed me the progress report, and the suspense was finally over. When I spotted it in my inbox, I sat up in my chair like a board was glued from my back to the top of my head. My eyes were drawing in to the screen like a magnet, and I had a severe case of tunnel vision. I admit I was acting a little crazy, like this email had some sort of life-changing information in it. So I took a deep breath, and started to read. Continue reading