Sunday, May 21, 2017

To the Parents of the CHS Class of 2017

Dear Parents of the CHS Class of 2017,

Holy shit! Our kids are graduating today. No, like really… cap, gown, ceremony, diploma… and not from pre-school but, for real, high school. This is it. This is where they part ways. I don’t know how we got here so quickly and there is not a single part of me that is ready for this but we are here, so… I guess I should face it at some point which is why I am writing to you at 4:30 am. (Ok, I fell asleep typing by 5 and just finished at 8:30!)

Before this chapter closes and another one begins (which it will – no matter my tears, I know this is not the end of the world but another new beginning), I need to be sure I take the time to speak my peace to you.

You see, I’ve spent a lot of time telling your kids how amazing they are, how proud I am of them – and every single word of that is true or I wouldn’t say it. Yet something was missing and today I realized, it’s you.

I moved to this town not knowing anyone. We were welcome here by our Fire Department family, they are not co-workers, they are family – which is a pretty amazing thing. We found a church that I loved. We were quickly embraced by and our family grew. And then, just shy of 4 years old – our world was rocked with Parker… then Allison’s diagnosis and our community embraced us. That, was amazing and for each person who was a part, I am thankful to them for being a part of our journey. But when Parker started school, I would be faced with my biggest challenge to date – finding my place amongst all of you.

Many of you are from here with amazing ties that go back another lifetime before we had children. Your friendship and bond are amazing. Yet, you welcomed me in despite my hesitancy. My world is different than yours. As much as you want it to be the same and I want it to be the same, it’s different. We live in 2 very different worlds but you saw past that and when you learned that not everyone could – you stood strong beside me.

I had not shared many of our struggles, while it can be hard to believe, I’m actually a very private person living a rather public life. Getting the district to accept and keep Parker at Eastview was one of the biggest fights of my life. When 1st grade came around and I started to breathe easier, I was hit in early September with a curveball I was not prepared for. As I walked up to the doors at Eastview to wait for Parker with the other parents, I was approached by Andra and Angie who told me of a phone call they had received and a petition going around to have Parker removed from the general education classroom. I remember every single detail of that moment in time. I remember hearing the words “if it were me, I’d want to know” and they were right. I went directly to the principals’ office where I was told she knew about the situation and was encouraging parents to call me for me to explain why my son belonged in that classroom. It was the weekend of the Friendship Festival and Parker was scheduled to ride in the fire truck to throw candy.

I debated not letting ride in the truck but went through with it. That was the first parade where I heard so many people calling his name, not just students but you… the parents. I cried through most of the parade route and again later that night. In less than 24 hours I went from the fear of being alone and no one wanting my child to be a part of this school to the overwhelming feeling of acceptance. It was the only time in Parker’s school career I had a lawyer by my side when I met with the school to make clear that I would not tolerate his rights being violated, or mine, and our expectations going forward.

To this day, I remain so incredibly thankful to Andra and Angie for telling me. For letting me know their thoughts on it. To Lori and Kim and countless others who wrote letters stating why Parker should stay and the benefits to their child from having Parker in the classroom.

Your support and strength powered me through what was one of the most crushing and defining moments of my life.

I remained hesitant and distant, unsure of how I fit in this collision of our worlds cautiously moving forward, helping your children understand my son.

In 4th grade, we took the class field trip to Iowa where one part of the day included climbing this crazy rock to get to the top and see inside of a cave. When Parker said he was doing it, no one thought twice – instead, you all came together to help me help him, passing him person to person up that incredibly narrow and steep path to the top and then again helping him back down.

These are moments I pushed for because he wanted, while I wanted to keep him on the ground and safe.  When you saw he wanted it, you were sure he was successful and I was tearfully thankful.

We made our way through middle school, thanks to Facebook, you were able to really begin to see more into our life. You celebrated the steps it took to get Parker into his first dance. At Outward Ingersoll, you flooded my phone and Facebook page with messages of complete pride when Parker made it over the wall. You cried tears of pride for him as if he was yours. When I could not be there, you pushed him for me. You encouraged him, believed in him and he succeeded once again.

Through it, I remained hesitant and distant, still unsure of how I fit into your world.

We dropped off our kids at the high school with 9 years of amazing memories and friendships and pleas for time to slow down, even though it didn’t. In the past 4 years, we have been through some really incredible things. Inchstones and milestones.

This past year when Parker was ready to start going to football games and wanting to sit with the crowd, you were sure I had a seat with the parents – in your section as though it had always been there waiting for me, which I believe now that it had. You listened to my fears and talked to the students to help me enjoy the game with extra eyes on Parker to let me know if he was overwhelmed. You helped pull me into the football game and let him just be a kid even though it meant more independence and occasionally out of sight. Parents, like Connie, who had a better view watched with pride and reminded me he was ok and that I was ok. You pushed us both to let go a bit which we needed to do.

We cried together at prom when his name was announced as Prom King and held our breath as he walked across the stage – both times, then cried more tears of pride at how amazing he did. You cheered, you shared your pride, you celebrated his crowning as though he was your own – because, in many ways, he is.

Yet part of me remained hesitant and distant.

I’ve struggled so much over this year, especially the past few weeks and now with graduation. I walked into the Senior Awards ceremony a bit unsure and witnessed again something that blew me away. This class of our children’s – the one that has gotten a bad rap at times, the one that amazes us and inspires the world … they left me speechless once again at the assembly.

To see the number of our kids getting scholarships and going into the armed forces was outstanding. My heart skipped a little with pride and fear for each of them. And that is when it really hit me just how ver much these young adults on the stage were not just “my” child or “your” child… but these are OUR children. This is more than my worries of how Parker will do when he returns to school and they have moved onto the next chapter of their lives but my worries about their safety in college, in the workforce, and while serving our country.

I’ve said many times over the years that while raising a child with a disability has it’s challenges and heartbreaks, it also has amazing moments I know other parents would love to have – at least on occasion. Every night I will continue to tuck Parker in at bed each night. Every night when I tuck him in, he gives me a goodnight kiss on my cheek and tells me at least 5 times that he loves me.  While these moments, every single night, mean the world to me since the Senior Assembly they have meant even more. Each time when we say good night, I think of your children too and hold onto these moments that I wish you could have too. I say a quiet prayer for their safety and wishes for wise decisions.

There was more that happened that day and many days since, as we filed out of the gym that day so many of you came to give me a hug – each one reminded me that you aren’t going anywhere that while this chapter in our lives is coming to a close, the next one and each after you will continue to be a part of. You will always be a part of Parker’s life… and mine.

While my heart continues to shatter over this chapter coming to a close you recognize the pride I have in how far Parker has come and share the concerns over what is next as he is OURS and your fears are real too. Gretchen has been very vocal in her support on Facebook, jumping in when everyone tells me “it’s ok” to say “It is but – these feelings are real and we share them with you.” Feelings so many of you have echoed when I’ve seen you out over the past couple of weeks.

I realized with this – I haven’t been as distant as I thought, I’ve actually been right where I was supposed to be all along. I’ve been with you right in the middle of both of our worlds as we’ve watched our children inspire the world just by doing what comes naturally to those given this opportunity of supported inclusion – real friendships.

I realized that I wasn’t hesitant but I was doing something I don’t do often or with many which is why I didn’t understand the feeling… I trusted you. From the first time you stood behind me and up for Parker and his place in our school, I trusted you. As we went through challenges and triumphs, you were there every step and I knew I could count on you and I did without putting any thought into it. Something inside me knew that I could and you never once let me down. More importantly, you never once let Parker down. You are part of his village, you are part of his successes.

When Parker walked across the stage at his first grand march and we cried together with pride and again when he was crowned prom king and we exploded with love for all of our children…. You “got” it. You understood the significance of each moment. It didn’t start here, it’s happened since day one.

While I’d love to say it’s because of Parker, it’s truly because of you. You’ve believed in Parker from day 1 as much as I have believed in each of your children. As I taught them about Fragile X and Parker, you were there to reinforce this friendship. You encouraged their involvement, you beamed with pride and you … you played a huge part in the success of all of our children. I wish I had the words to thank you enough or let you know how much this has meant to me over the years. It has been a tremendous honor being in this village together.

While there is not enough Xanax to get me through graduation today – or Kleenex… you doing ok Brandy and Tara, I know… I’m crying as I write… there is the reminder that as we all take these next steps, we are not doing it alone.

It’ll be different. It’ll be amazing. I go forward with a little less anxiety as I know that you are forever invested in us, just as we are in you. When your kids are home, I know you will encourage them to see Parker, to keep in touch, grab lunch or a movie or just hang out. When it’s time for class reunions and your kids mention it – you’ll be sure that they’ve included Parker. When it’s time for Parker to move out on his own, you’ll continue to support him, keep tabs on him and share in our pride with his accomplishments. When he’s out working in our community, you will know this success is because you helped push us both to reach this goal.

We have shared in the most amazing experiences over the past few years. I know it’s just the beginning for the amazing things to come and I can’t wait to share them with you.

Through today’s tears, we will hold our breath together as each name is called and we say a quick prayer they make it successfully across the stage, a part of us will be forever changed as we step back and watch our kids take the next steps. But, we will do it together.

Thank you for being such an amazing parent, for welcoming us into your life, for believing in Parker and seeing his potential, for pushing him (ok, me) and for always, always having our back.

And thank you, so very much, for reminding me that doesn’t end today. There are many more chapters ahead for us to write.

Congratulations on your graduate, I am so excited to see the amazing and positive impact they will make in this world.



Monday, April 24, 2017

Your 2017 Canton High School Prom King....

In case you haven't heard (Spoiler alert!) #ParkerIsPromKing ! 

A few months shy of his 4th birthday, my son, Parker was diagnosed with Fragile X Syndrome. In the whirlwind of next few months to follow we were told (and learned from online researching) a world of things. Including advice from a genetic counselor to “start researching institutions for him to live in” while she listed the things he’d never do, including going to school with typical peers. When I reached my point of what I could handle I tearfully walked out of the meeting after telling her she was wrong and determined to prove that.

When it was time for Parker to start kindergarten we pushed the district for Parker to attend Eastview, despite the lack of special education programs, as it was his home school district (we have 3-grade schools). It was a fight that would take multiple years and standing strong against a handful of parents who wanted him removed from the general education classroom (where he had a one on one parapro) before it was agreed upon he would stay until he transitioned with his class to middle school - a transition they would make together.

I learned early on that Parker would be a target for being picked on and if I didn’t help create a circle of friends, the odds of him being a victim increased with each day. Starting in 2nd grade, I went in yearly to talk to his classmates about what Fragile X is and how to be friends with the boy who jumped excitedly in line and turned over chairs and desks when frustrated. I helped them understand the actions he takes - not to be challenging but to get their attention to be included. I taught them how to understand how his brain worked. I taught them how very much they have in common and how very much alike they truly are.

While I could tell them everything I knew, what they would do with that information was truly up to them. I could tell them how to be his friend but ultimately, that choice was theirs. You can’t force friendships.

Over the years incredible friendships have formed, many papers have been written and presentations given by his peers on Fragile X, many have read to Parker or helped tutor him, many have been involved with him in sports and also hanging out at the house with him, especially during the summer. 4 mornings a week he has friends (the most beautiful girls, of course!) pick him up and take him to school. I have seen inclusion work at it’s very best. I’ve seen the young boy who would lay on the floor or knock over chairs in frustration find appropriate coping skills. I've seen his desire to fit in and a longing every day to see his peers…. His friends... that he misses terribly on days he doesn't see them.

I’ve always hoped that there would be a way that the students at Canton High School, especially his class of 2017, would know how very much each one of them means to him. I had also hoped that he had made a positive impact on them, just as they have for him. I know what they tell me when I see them out and about but, of course, they would only say something positive to me – I’m his mom!
This past weekend, I found out the answer to this thought that is always in the back of my mind. If Parker has truly made a positive impact on his friends and if he meant as much to them as they do to him in a way that still has me in (happy) tears 2 days later.

This year was their senior prom. An event Parker has been looking forward to since last August – not even kidding. It’s the best night of the year for him and he couldn’t wait!

We made it through the promposal with breeze and Kristen was all set to be his date a couple of months ago. Shortly after I received a very unexpected text from Parker’s friend, Christian. He asked if it was ok with me for him to campaign for Parker to be prom king. I told him “of course!” but also didn’t want him to get his hopes up. Awhile later, the first round of voting took place. Christian pushed the idea of “Respect before Popularity” to his classmates as he campaigned. A couple of emails came through to me with hesitancy from longtime friends worried that this would be too much attention for Parker and he would shut down. I promised them that we had time to practice and Parker would be fine. Which, I was 90% sure of….maybe 95%....

A couple of weeks ago I was checking Parker’s school email when the final ballot came through to vote for prom queen and king. I printed it off for Parker and then read through each of the names with him. I said, “Look, your name is on here! Do you want to vote for yourself?!?” to which he replied, “No” before casting his vote for someone else. As I looked through the names on the ballot I knew in my heart there was no way he’d get prom king. The list was filled with some seriously amazing young men who deserved the crown equally as much as Parker.

When we returned from Spring Break we were left with 4 days to practice Grand March. I wasn’t too worried as last year a lot of time and effort went into this and I knew he had it down. What I wasn’t sure of was the process in the chance that he made prom court. I called the prom advisor, Mrs. Schoonover and asked her for some help. In my mind, prom court meant King & Queen, Prince and Princess, Lord and Lady and a set of senior attendants. I thought 4 seniors made court plus a set of junior attendants. With this thought in my mind, I asked her if she could tell me if Parker was on court, I told her I didn’t need to know where on court just yes or no is he one of the 4. *I’ll explain why this is funny in a minute* She said she couldn’t tell me. I understood but also needed to know what we needed to change, if anything, about the way we were practicing. We agreed we’d practice both ways just so he was prepared either way. *The funny part, Canton’s court is only 4 people (Senior King/Queen, Junior Prince/Princess) – not the 10 I thought. So I’m sure when I said, “one of the 4” she thought, ha! That’d tell you the answer – even though it would have went completely over my head.

His teacher brought in a cowboy hat so they could practice a hat being put on his head like a crown. They even sent me pictures. When I asked him about practicing he said, “I don’t want to wear a cowboy hat!” *giggling* I promised him no cowboy hat but maybe a crown. I didn’t say much because I truly thought it was not going to happen. In my moments of panic the day before, I asked his teacher to make a visual schedule for him just in case he was on court (still thinking 10 people) so he knew what to do and that he’d need to walk through Grand March a 2nd time with someone besides Kristen.

Prom day came, Parker’s friend Rylee (his date from last year) came to help get him ready and be by his side through each step of pictures and Grand March until the busses were loaded and they would take off for their prom destination.

With Grandpa and Rylee’s help, we were dressed and off for pictures in a snap. We made it through 45 minutes of pictures at the park before Rylee took Parker and Kristen to the school where we would later meet up to watch Grand March.

Grandpa John, Parker and Rylee

Kristen and Parker

Parker and his incredibly proud sister, Allison

When we arrived, as we passed the door in the classroom where he was hanging out Rylee was exiting with tears in her eyes. Without really thinking, I guessed it was because she was wishing she was going to prom too. Little did I know she was just told what was about to happen. She said all was good and Parker gave me a thumbs up before we went to our seats.

Parker and Kristen were #22 on the list to be announced.  At least 2 of the other male candidates went out before he did with no acknowledgment of making prom court. Still thinking 4 senior boys would be picked (of the 8 on the ballot) I was getting excited that he would be one of them. When it was time for him to be announced I started my video and heard the following: “Kristen Schappaugh escorted by the 2017 Prom King…” and that was all I heard before saying “Oh my God” over his name and sobbing uncontrollably and watching carefully while praying that he stayed on his feet and followed the steps to get the crown. (My shakey, tearful, video can be found here  the video his sister took - yes, she calls him a dork is here and the video from my friend, Amy Pollitt, is here - trust me you will want to watch all 3!) Time was frozen as I watched his face, partially covered by his hand hiding from the roaring crowd and endless flashes, I could see it… the biggest smile on his face and I knew what this moment meant to him. 
Photo Credit Dave Lewis Photography 

Photo Credit Dave Lewis Photograph

Photo Credit Dave Lewis Photography

Photo Credit: Crindy Hedges

As he made his way out of the gym, I sent out a text to Dan then updated Facebook that my son was just crowned prom king while making my way to him. I met him in the hallway, with Rylee fully embraced in his arms and tears of pride streaming down her face. I said I needed some of those hugs too and told him how incredibly proud I was of him. We snapped a few pictures before he made his way back to the cafeteria and I went back to my seat. (Hindsight, I wish I would have followed him to the cafeteria to take pictures of him with his friends… but all I could think about was being in my seat for when they brought him back out at the end.)

Kristen, Parker and Rylee

Parker and Christian

Parker and Madi

Parker and Jessie

Photo Credit Rylee Sehr
Parker and Lizzy

After all of the attendants at Grand March had been announced, they brought back out the Prom Royalty. (Video Here and Here) The junior prince and princess and the prom King and Queen. He handled each step beautifully, hand partially covering his face at times but walking through each step and completing pictures before rushing off to get on the bus to head to their prom destination where he danced the night away.

Photo by Dave Lewis Photography

Photo by Dave Lewis Photography

I picked him up that night, exhausted and ready for bed – still wearing his crown and still smiling from ear to ear. 

Mercedees and Parker

King Parker and Queen Lizzy about to enter prom

Parker and Zach

Parker and Madi Dancing

The next morning he asked to see the videos, each time he watched one he lit up with the biggest smile I have seen on him, only comparable to the Cubs winning the world series smile 😊 when I asked him about being King and his time at prom he just beamed with pride.

It’s hard, if not impossible, for Parker to express himself in words. You can see it, in his smile, in his eyes.. but his ability to express his feelings in words is limited. This was clear to see all over his face how much this meant to him.

It’s hard to know, especially when you live with a disability if you are truly accepted. Now he knows… we all know, he really is one of the class. He has touched so many lives, just as so many have made a positive impact on him.

I had been asked many times if Parker would care if he made court or not. I always said “I don’t think so” because I thought it may have been something that meant more to his friends than to him. I know now, I was very wrong. I underestimated him, how much he was watching at school, hearing from friends and… wanting this opportunity.

I thought he’d be happy to win but, again, underestimated just how happy he would be. This truly meant the world to him. He’s still beaming, he’s still watching the videos, he’s still lighting up with pride each time. While the attention is hard for him, he is also loving the positive attention that has come with this. I think it’s so much more though. I think it’s everything we all feel when we know the people we care and respect the most really do care and respect for us too. Parker’s life is very different than many but his feelings are very much the same.

What I’ve seen in him since Saturday night is something deeper than any of us will ever know but it’s incredibly clear that this was one of the very best moments of his entire life. 

This is a memory he will love and cherish forever. There is no way for me to even begin to thank Christian and all of Parker’s classmates for this moment in time. With just a couple of weeks until graduation, he has been given the most amazing gift by his peers… acceptance and honor for WHO he is, fragile x and all.

I shared this post on Facebook and wanted to include it here too… and once again say THANK YOU. I do hope you realize what an amazing thing you did. 

With all of our love, appreciation, and thanks to the CHS class of 2017, the junior class (of 2018), CHS staff and administration and to our community – Thank you so much for this most amazing moment in time. 

My prom king

Christian... THANK YOU!
Respect first :-)

Wednesday, January 18, 2017

All good things must... Walk for Fragile X

In the fall of 2003, I was contacted by a local high school senior that I had never met named Andrea Schnarr. A member of my church had given Andrea my name and recommended that she contact me about mentoring her for her senior class project.

Andrea had an ambitious project - to organize a walk to raise awareness and funds for something. That something, after our introduction, became Fragile X Syndrome.

And just like that "Walk for Fragile X" was born.

There was never a plan or thought beyond the spring of 2004. We were very focused on creating this one walk. One day. One walk. One hope that it would be a success. I did my part in helping to educate Andrea on Fragile X and help with promotion. I answered questions while she planned, got donations and with the help of our families and friends we hosted the first walk as 150 people came together to raise just over $5,500 for Fragile X - far exceeding our expectations.

After many months of planning, not only had Andrea aced her project but we gained a life long friend and new member of our family.

Andrea with Parker and Allison at the 1st Walk for FX in 2004
Our local newspaper and radio station were both in attendance, during an interview while the walk was going on I was asked, "Will you do another?" Having not thought at all beyond that year I said, "We will do it until we have a cure."

At that time, I truly believed a cure would happen within the next few years - before Parker hit puberty. I knew where the research was heading and felt confident that this would be do-able.  From that point we hit the ground running.

With Andrea leaving for college, I took the lead for the Walk for Fragile X. Life was a bit easier then. I was a stay at home mom with young children. Time was much more on my side in those days...

Over the next several years amazing we saw incredible growth and support from our community and from family and friends near and far.

2005 with my friend, Dawn Carroll. One of the very first FX moms I connected with and was inspired by. 

These little babies <3 2005  

Our friends Clifton and Tina in 2005


2006 Fragile X Families from all over Illinois!

2006 Walk for FX That's itty bitty Remi Lyons on the left, Andrea, me carrying Allison, Parker, Kelsey #1 (Giddens) and Scott leading the walk.

2007 Group Picture

2007 Special Guest, Congressman Phil Hare, with our family.

Remi, me, Parker, Congressman Hare, Allison and Scott in 2007

The pic of the 2007, ABG and Allison

2007 brought a very special guest to our walk when Congressman Phil Hare joined us. A very dedicated champion for Fragile X he proved just how dedicated and amazing he was when during a meltdown Parker kicked him in the shin in front of our entire crowd during the welcome speech. The former Congressmen didn't think twice about it but continued with his address to the crowd. The meltdown was pretty epic and crushed me to have it happen in front of everyone. When it was my turn to speak. All I could do was look up with huge alligator tears and say, "And this is why we are here. This is why we do this."

It's fair to say that falls in the moments of my life I'll never forget. In true Fragile X style, we ended on a good note.

I know I have pictures from 2008 and 2009 but I'll have to dig them up and add them later...

From our 2nd walk on - Karen Hanlin had become a staple of our walk. Every year she took at least 1 full week of leading up to the walk to help me get ready for the walk. We had a lot of great times and heart to heart talks together through the years. Every year she brought in new volunteers from Mid-America National Bank to help us. She was amazing, as a volunteer she was the best you could ask for. She did it all and put her heart into everything she did. As a friend, she provided amazing guidance and a shoulder. We didn't always see eye to eye... which I'll share more about shortly.. (See the comment under the balloons)


2010 Committee members posing for the picture for the Daily Ledger promoting the walk.
2010 Karen Hanlin and her Mid-America National Bank crew!

For 6 years, I had Karen by my side every year growing the walk and helping me problem solve. Then, completely unexpectedly less than 2 months after our 2010 walk on June 10th, Karen passed. Losing Karen was gut wrenching. I was honored to speak at her funeral and crushed when we started planning our 2011 walk without her.

2011 brought an addition to our walk that we had discussed for awhile but didn't feel prepared to take on until Lori Driscoll stepped up and offered to take the lead on the Fragile X 5K.  With Karen no longer with us, Lori took over taking time off work to help me prepare. She and Kim (Lyons) had also been key volunteers since the 2nd walk and stayed close by my side as we continued on.


My favorite pic from our 1st 5K of Lori and Kim giving directions for the 5K...
You know "go *this* way"

I had told Karen for years I wanted to do a balloon release. Karen hated the idea and we disagreed on it every year with her winning. With no one to argue with me, we inflated a zillion balloons for the 2011 walk.
To say it was a complete disaster is an understatement! Not only did the weather not cooperate but the balloons became a tangled mess, leaving us to hand off clumps of balloons to people. Those of us who knew Karen had a great laugh from it and said that once again Karen got her way.. no more balloons!

Always present the fireman from the Canton Fire Department helped us hang tarps to save us from the rain that was pouring down in 2011.

The group picture was taken under the pavilion before 1 quick lap for our walk in the rain.
If we can do anything... it's improvise!

Karen's family wore special sweatshirts in her honor.

2011 Girl Scouts

2011 Volunteers

2011 Allison and Remi!

2012 Kim and Lori, always stepping up, taking on the booth at HyVee to promote the walk and 5K
2012 5K runners

2012 Auction

Drew Brodbeck and Parker

2012 Girl Scouts

2012 Auction, there was a fight for this amazing bench!

2013 - 10 years!! 

I think we were all a bit shocked when 2013 rolled around and the reality hit us that this was our 10th annual walk for Fragile X! Those first 10 years had flown by. Many things had happened. High school and college graduations, weddings, funerals, new volunteers and amazing dedication by our team.

2013 shirt design

Allison, along with her Girl Scout troop leader, Amy Allard made the news in a story talking about the amazing involvement of their Girl Scout troop in our walk and their incredible support for Fragile X!

Screenshots from the news story!
It also came with an unexpected hurdle in the form of a flood. Our home for the walk since the start was Wallace Park. 2013 brought the great flood which completely flooded the park. There was no way the park would be open for the walk, with just a couple of days to figure it out our search was on for a new location.

This ended up being a blessing in disguise. We ended with a new location at the Middle School which was a huge upgrade when it came to space. We easily quadrupled our space which was much needed. A great new trail for the 5K which was much more appealing to our runners - it was really a blessing!

2015 Fragile X 5K

The incredible Dr. Elizabeth Berry-Kravis running our 5K!

Jayne Dixon-Weber's daughter, Cassie (front right) came with friends to run the 5K too!

Our 10th annual walk also came with a major surprise when friends of mine flew in from Massachusetts, Canada, Michigan and Colorado for the walk!

Helping me with late night, last minute things for the walk! Friends from all over :-)
Back Row, Melissa (MA), Cindi (CO), Amy Z (IL)
Front row: Me, Karen (Canada), Mary Beth (MI), Talitha (Canada)
I hate surprises but this one... I'd take every single day <3

Helping to set up for the walk, my amazing friends! Minus, Melissa who needed to go back to Caleb at my house :-)

2013 Scouts

2013 More friends from Chicago and South Dakota 

My friend, Lenny, who always made the drive. We were sad to say goodbye to Lenny in 2016 when he passed away unexpectedly.
Go Good Lenny. Thank you for your support.
We miss you much!

Parker with Lee and Mrs. Reavis among other friends walking at IMS.

Andrea, Dad and Nick Garera who won everyone's hearts "You're It"!


Back of the 5K shirt

Sole Sisters who ran the 5K

Front of the 2014 Walk shirt

Amy Zeleznik and Abe

Some awesome FX Mommas

Our A Team, Allison and Austin

It's Auction Time!

Nicole and Lori always made a great team!

Dawn and Brad

We opened the Computer Lab for some quiet time away from the excitement.

Our girl scouts

My Grandma and Richard Gunnerson

Our friends from Missouri, The Hamiltons!

Jerry Hanlin and sons at the auction

Mom and Lew waiving at Heather, our photographer, up on the firetruck.

More walkers

2014 Volunteers


Fragile X 5K

Girl Scouts 2015

The Lincoln Family - they stole our hearts and we've watched their kiddos grow! An amazing part of our walk each year.


2016 Fragile X 5K

So many shirts!

My house... right before (and then repeated, right after) the walk each year. 

2016 Ready for the Walk

The easiest way to get everything from my house to the walk location... a horse trailer!

And now....

Well, now it's time we say THANK YOU! Thank you for 13 amazing years that we never saw coming. 13 years of incredible support from our community, family and friends.

Over the past 13 years we've made and built friendships that will last our lifetimes. Individuals who were in no way attached to our family signed up to help through friends, through churches, through co-workers....they were there and are now, forever, a part of our lives.

The walk is a multiple month project that should start in the fall and kick into high gear after the first of the year. We pulled that off well for a long time. And then... well, life. As our children have gotten older, we've become incredibly busier. For all of our volunteers, our lives have moved forward in ways we never could have expected. It's left little time to prepare and pull off and amazing event.  Although we had wanted to end the walk on our highest note ever... we simply do not have a date we can work in this spring to pull that off.

A piece of our hearts have broken yet that piece is also replaced with incredible pride for a 13 year run that raised incredible awareness and funds for Fragile X.

While we are saying goodbye to the Walk for Fragile X and Fragile X 5K, we are not saying goodbye to raising awareness or to fundraising. We have something up our sleeve that's completely different than anything we've done before. It won't happen this spring but when the time is right, it'll be worth the wait.

This spring, for me, I have a young man to prepare for his 2nd prom. That same young man will walk the stage at graduation this May, shortly after his 18th birthday. These are things that are incredibly important to him... and to me. These are also things that take significant planning, practice and time. Such is life with Fragile X. It's what is necessary for his success and that is a top priority for me.

This spring, I have a beautiful young daughter who - after attending an Advocacy Trip to DC with me - will be off on another Girl Scout Adventure during spring break in April.

They are, simply, always on the go and I could not ask for more for them than to be such active members of our community.

I have many people to thank and am in tears knowing I'll forget someone who is crucial. If I do, please know it was not intentional and feel free to call me out on it so I can add you in :-)

I promise, not all will be long mentions, I only have so many tears I can shed while writing this and I want you to read this all the way through but a few key people... they've more than earned a few extra words.

  • Andrea Schnarr, you my dear friend are part of our family. I am so incredibly proud of the woman you have become and all that you have done. It's been amazing watching you grow up too, like one of my own. You are forever a part of our family. We love you and cannot thank you enough for starting all of this and making that first phone call all of those years ago. You reached me at a time when I was lost in a brand new diagnosis unsure of my purpose but stepped out of my comfort zone to give this a try (we all know I can't say no). The results... life changing. You have helped me become the person I am today and I thank you for that with all of my heart.
  • Kimberly Lyons, our children knew we needed each other and there was a higher purpose for us when Remi took Parker under her wing in kindergarten. You have never left my side. You have survived the very best of me and the very worst throughout all of these years. I never had to think twice if you would be a part of this, I always knew you would. Thank you for taking on the 5K with Lori - the 2 of you owned that amazingly. You have always been my rock. I am forever thankful for all you have done and most of all - your friendship.
  • Lori Driscoll, oh lady! We go back to when our boys were 3 years old! Oh my goodness, to have those days back :-)  You are amazing and have been one of my favorite people to get to know through all of these years. You are the hardest worker I have ever met. You take on everything with the determination that it can happen and then make it so. Without thinking twice you took the lead ont he 5K and with Kim, made it awesome - even through my glaring "remark the course" eyes.  You have put up with me well and still call me a friend... for that and all you have done, I am thankful and will treasure you always.
  • Emily Johnson - our first and longest lasting Karen prodigy! I'm not sure how she talked you into our chaos but you walked in timidly and then stayed forever. You have been the best addition to our walk family and to our lives. Your amazing spirit, uplifting and encouraging personality and wit have always been welcomed. You see the positive in everything and take on all new challenges put before you. We watched you go from quiet and shy to a real leader in this group. I am so happy to call you my friend.
  • Amy Zeleznik - lady!! You are my sanity and at times, I think I'm the reason you may lose yours! I cannot imagine the FX life without you. You are an amazing mother, friend and soul. You are my calm and my shoulder and always here. I don't know how you do it all but you do so with style, grace and that beautiful smile.
  • My parents - John and Colleen Usrey. You have pushed and encouraged me to become who I am and never left my side. You've been my best cheerleaders and caught me when I've fallen but always made sure I got back up. I would not be who I am without you and could not be more proud to be your daughter. Mom, from getting donations to all of your help the night before and on walk day, I thank you!! Dad, you are the social butterfly of our walk and keep our auctions lively, thank you for letting everyone see that great person you are each year! I love you both so much!
  • The Coopers! I'm just listing you all in one place ;-) Betty, Randy and Jeni! You rocked the bake sale every single year, you pulled in donations, you were on Parker patrol, you've done it all. You've wiped my tears, offered to kick butt, made me smile, welcomed participants and pulled in new volunteers. You are, simply and truly, amazing and I love you!
  • Scott Roos - thanks for standing by me through this one. Like many of my fx journeys I know it put you out of your comfort zone and that took it's toll on us. I've always believed everything happens for a reason and the proof in that is Jen who jumped in beside you each year for the walk (and pulled in family and friends) and became my sanity in many ways. Thank you for sticking through all 13 years, lining up the great fireman, food and helping with making the walk a success from getting donations to setting up to tearing down. You and Jen have been such an important part of the success of the walk and I am thankful for and to you both.
And of course....
  • Amy Allard and Rocky Richardson - holy batman you two really are the wonder twins. I don't know where you hide your capes but I am convinced you wear them and posess super powers. You have been such an amazing asset to our walk, you are dedicated and truly incredible women who are the very best role models for not only all of the Girl Scouts in your troops but women of all ages, everywhere.  Thank you for being a part of our group!
  • Parker's Pals... Drew Brodbeck, Lee Davis, Michale Davis, Remi Lyons, Jessie Williams (I know I'm forgetting some) Thank you for being there at the walk for Parker! You are the very best friends anyone could ask for!
  • Dan Oaks... Your pulled pork made our walk and also made it tempting to keep going on just for that reason :-) The incredible support from you and Lori over the years is amazing. We are forever grateful.
  • Grandma Carolyn - I already miss those cinnamon roles! We've missed seeing you the past couple of years but always, always have you in our hearts and appreciate all you have done over the years.
  • The Lincoln Family, Missy Zolecki, Tiffany Williams, Kristy Englert, Canton Fire Department, the Girl Scout and Boy Scout Troops, Colonel Klink's Inflatables, IMS, Canton Park District, Kelsey Emberton, Kelsey Garlish, Grandma Day, Shelly Deal, Canton Daily Ledger, WBSY, Jake Fidler, the Hillcrest Auction Company
  • . ..
  • Our community family and friends.... there are so many to name over 13 years please know that if you came to walk, run, be a part of the auction, donated or just shared our event - we are so thankful and appreciative of you. 
For our closest volunteers, you've survived my favorite and most hated week each year :-) I know I've turned into a bit of a monster at times from the pressure and lack of sleep but you never left me. Truly a testament to your friendship and love for our cause.
Saying we are done with this chapter is incredibly hard. While this chapter closes, another is soon to be written and when that is announced we hope to have your continued support.

With all of my love, appreciation and thanks.... truly, THANK YOU for an amazing 13 years of Walk for FX. Now... to find someone to make me a t-shirt quilt... :-)


PS  you can ALWAYS donate ANYTIME to the National Fragile X Foundation or our local chapter: Central IL FX at  We have a lot of work to still do! Our heart, passion and drive is there and will continue to do all we can for the amazing fragile x families and NFXF!