Saturday, August 27, 2016

To the Mommas of the Littles... life with disabilities

Hey young Momma with the wide eyes and never ending lump of fear in your throat,

I was once you. Some days, I am still you. Just not of a little anymore. My guy, he's a big. He's 17 now. Just typing that makes me tear up. I don't know how it happened but it did - we are here. He's a big senior in high school and that paralyzing lump of fear in my throat... that's here too.

I've learned a lot in the past 17 years, some on my own, some with the help of those around me - most of it documented somewhere along the path for you through media interviews, social media or blog posts. Maybe, one day, you'll even get to see it in a book. But, for today, there's something incredibly important for me to share with you.

I made a mistake. Well, seriously, I've made millions of mistakes... it's part of being Holly and how I learn. While I wish I could go back and change this one, I cannot. But, I can pass this wisdom onto you. I really do hope you will listen and trust me on this one.

This past Friday night was our first home high school football game of the season, being the big senior that he is, my guy - for the first time ever - wanted and ASKED to go to the game. This was pretty huge. Like all seniors in high school, he wanted to go with his friends... not his Momma. I guess I get that... *sigh*.

I talked with his friends, giving them a heads up he wanted to go and we went. At first he was a little unsure, he even held my arm and said he would sit with me when a friend asked him to go with him after we arrived. I smiled at him and asked for someone to get his friend, Jessie, because as much as I would have loved to have him by my side it's not where he belonged. As I expected when he saw her, he went right with Jesse to their seats.

I watched from a distance as he sat "with" the crowd but not "with" the crowd of high-schoolers in the student section.  It was still early, the freshman game was still going on. A lot of his friends are in band, cheer and on the football team which puts them all somewhere else during the game. My heart broke as I watched him look around nervously. I watched everyone around him talk with their friends but not to him. It left me questioning this decision and fighting tears over what we were attempting to do. I won't lie, it felt like an hour passed as I watched nervously and forced a smile as he looked at me with those great big blue eyes completely unsure of himself. The reality was it was less than 5 minutes. Jessie was there, other friends were joining, he wasn't "alone" even though he seemed pretty alone. Jessie text that he was asking for his friend, Lee. I text Lee and almost immediately he appeared by Parker's side - where he remained the rest of the night.

With that, I left his side to go sit with my friend Amy and an entire section of amazing parents who I've had the great privilege to get to know over the past 12 years of our kids' school career. While they've always been a part of our journey I've never been in this position of sitting to watch our children's class do something like this - in this very "normal" way. They were encouraging, understanding and supportive the entire way through. Amy went to talk to some of the kids to settle my fears of Parker being alone and the parents, well, they treated me as though we haven't missed a beat in all of these years, as if I've always been sitting right there with them at every game which was exactly what I needed.

As the varsity game started and the minutes ticked by I settled into my spot and could see (and was text updates) that Parker was having a great time - surrounded by friends, wearing his headphones, in the loudest section (and that says a LOT considering I was sitting right behind Scott Miller and his cowbell!). That's when it hit me like a freight train how badly I had messed this up and the opportunities that have been us both.

Which brings me here, tonight, to write to you to beg you to please, please, please listen to what I am about to say.

Parker is a senior and wants to do every single thing the senior class is doing. As his momma, I am determined to make that happen and for this to be the very best year ever for him and his classmates. I thought I had done a lot right, leading up to here but it turns out I missed something incredibly important that would have made his entire high school years even more magical. (High school has been awesome!).

I started out right. When Parker was in grade school I started going into the classes to talk to the kids in his class about Fragile X and Parker. I covered it all from genetics to how to be his friend, his strengths and his biggest challenges. I did this for years and loved it, I believe the kids did too. He's always had an incredible circle of friends for which I am grateful. I knew this was key to his future, his safety and to his independence at school. Going into the classes and providing his peers with the tools and understanding of his disability was something that I did that was very, very right.

I also missed a key part of the road to independence and I don't want you to miss it too. Creating independence is going to land in the top 5 most challenging things you will do because, Momma Bear, it requires you to step back which, trust me I know, is not easy. It means your child will struggle and it'll take time for him to find his place. It will mean pushing him into situations that you are unsure of trusting that this circle of friends (*yes, KIDS) that has been built - will be there for him. Because - trust me... they will. Not only does your child need that but you do too. Again, trust me on that. And stop rolling your eyes, I've already walked your path - I know.

Yes, there is a chance that his junior, sophomore or freshman year he wasn't ready for this - that he wasn't ready to handle the craziness of a hometown football game in the student section. But, the reality is - I'll never know because I never pushed him to try. I never reached out to trust his friends to be by his side. And... I should have. Not just for football but for basketball, soccer, baseball, school plays... everything. I should have reached out, set up the plans with his friends and then stood back - there to help, if needed, but knowing he stands strongest with his friends. I wish I would have. I wish someone who has walked this path would have said to me "Step back and watch him fly, Momma. He's got this, his friends are helping him build his wings."

Because that is what friends do. They help build your wings, they lift you up, they help you soar. I saw this first-hand last night just as I have many times before.

I had no idea when we arrived if we'd make it through the entire game, if he'd sit with his friends, heck - if we'd even make it out of the car but we tried. Because we tried, we saw success. Huge success. Sometimes, like when he was in middle school that success took all school year to get from the parking lot into the school to a dance. Other times, he simply wants to be a big senior and has no fear and the success is immediate.

Building independence is not easy and it's really f*cking frightening but it's so incredibly necessary and important that it's not an option. It needs to always be a priority.

This is how amazing it looks...

Near the end of the Freshman game. Photo cred: Jessie :-)
*If it's not clear mine is the one wearing the headphones!*

With his friend, Lee, who's always there watching out for him!
Photo cred: Miss Paige!

The arrow points to my guy :-) See how well he blends in it's hard to find him without the arrow!
Photo cred: Dave Lewis Photography 

Right before we left due to the lightening and approaching thunderstorm.
Photo cred: this proud Momma <3 

I was anxious, I  would bug his friends with the occasional text asking how he was and reminding them I was there. From my spot several rows up on the the 50 yard line, I'd take the opportunity when standing to cheer on our boys on the field to look for my boy in the stands. At one point I went to get Parker's phone at his request (per Lee). When I walked by the student section, Madi stopped me to tell me that not only was he doing great but that they were encouraging him to yell, chant and be involved. Her reassuring smile, as much as her words, showed how proud she was not just of him but of everyone who was reminding Parker this was where he belonged... with his classmates, his friends. When the rain hit and the stands needed to be cleared near the end of the 3rd quarter, Jessie was there to be sure he made it safely down the steps. Lee, never once, left his side.

*THIS* This is what we work for, what we dream about, what we hope our children will experience. Don't wait until your child's senior year to encourage that independence. Start sooner. Really. Start sooner. I know you can do it.

I'm asking you to trust in the circle of friends, in the teachers and parapros who love your child. Trust in them to hep you make these steps and these MEMORIES for your child and, when they happen go do what you've felt was impossible... go blend in with the other parents, trust me they want you to do that too as they know it's where you belong.

The hardest fact for me to face is that one day I won't won't be here for my children. It crosses my mind at least once a day, it is the way life is supposed to work - we are not supposed to outlive our children. Tomorrow is a gift, not a promise - not just for us but for our children. While life is supposed to be one way, it doesn't mean it will be. Take the time to make the plans to build not only the friendships but the independence your child deserves.

Use that time to take care of you, like you deserve. Have faith that these friendships and the ones in their future will carry them throughout a wonderful lifetime of amazing independence.

Stand back, young Momma, and watch your little shine as they grow. This will be most perfect reflection of your hard work. And, while you are standing back... remember to breathe. :-)

Love and Hugs,
The older Momma who's been traveling your path and sometimes lives without that lump of fear

Parker lives with Fragile X Syndrome, you can learn more about Fragile X by visiting the National Fragile X Foundation's website at

When Technology Takes Over

For over 15 years now I've been going to our local comedy club in Peoria, Illinois - The Jukebox Comedy Club. For the past couple of years, I've been incredibly involved behind the scenes and can often be found welcoming customers behind the counter as tickets are picked up for the night. It really is my home away from home, a place that's embraced the kids and I and watched us (all) grow up.

I've seen the club go through a lot in all of these years but what I've seen most truly concerns me - and amazes/disappoints me at the same time. I hear a lot of people complain that their kids are spoiled by technology. That their kids have "lost the ability to be social". And that they "don't appreciate live events" because they simply stay home and stream it on a device instead. I'd like to point out, it's not just our children.

This trend of downloading and watching from the comforts of our home is not just the generations below us, it's ours. Our expectations are high and our patience is low. So we download an "event" and watch from home thinking we are having the time of our life. When in reality, we are missing out on real experiences. And worse yet, hurting the live entertainment industry to the point that businesses are closing their doors which means this is an opportunity our children won't ever know.

It's not just comedy, that's simply the closest to my heart. It's all live entertainment. Venues are taking a huge hit. People complain "I've never heard of them" before or the "inconvenience" of leaving their home. I'm not sure if everyone realizes it or not but your top name performers were not always selling out venues to hundreds of thousands. They are because they got their start in small, hometown venues who gave them a chance - with audiences who wanted a good time and discovered greatness. That's how they became who they are. Sometimes I can't help but think they have forgotten this too.

For our club, we continue to bring in the best, just as I see other venues do. Maybe it's not the most commonly known name *yet* but that doesn't mean it won't be a great night out or that you'll find a diamond on their way to shine. Every single weekend I'm there (which is very close to every) I get the opportunity to meet the most amazing people, to hear about and support their journey. I've met people with names everyone knows like Louie Anderson, Steve-O, Tom Green, Pauly Shore, Mary Lynn Rajskub, Greg Hahn, Loni Love, Heywood Banks, Caroline Rhea, Bobcat Goldthwait, Gilbert Gottfried, Josh Blue, Mark Curry, Tim Meadows, Charlie Murphy, The Broken Lizzard Guys, Tom Wilson, Donnie Baker, Dave Coulier and Kevin Pollock. And names you SHOULD know like Greg Warren, Costaki Economopolous, Kevin Meany, Henry Phillips, April Macie, Tom Rhodes, Brett Erickson, Brad Williams, Lisa Landry, John Roy, Roy Wood Jr., Jeff Caldwell, Chris Schlichting, Sarah Tiana, Ben Moore, Ryan Singer, Dale Jones, Michael Palasack, Larry Reeb, Mike Armstrong, Mitch Fatel, Andy Woodhull, Mike Winfield, Shane Maus, Eddie Pepitone, Tommy Johnagin, Matt Braunger, Fortune Feimster, Joe Roderick, Jamie Lissow, Chris Porter, Johnny Beehner, Leonard Ouzts and so, so, so, so many more amazing, talented, hilarious people.

What's best about small venues is that it's personal. It's a chance to meet the talent after the show, to hang out with them to know the people who are working hard week after week to provide you with quality entertainment. There is something you get from live entertainment that you'll never get from a download or even from a huge auditorium performance - there is that intimate and personal side that makes venues like the Jukebox special and hopefully something we can hold onto and pass along to our children.

The experience of live entertainment at it's best with a loved one or friends by your side, letting go of the struggles of being an adult and just enjoying the laughter and break from the reality of life to just stop and enjoy that moment.

Over the past couple of years I've watched many comedy clubs and venues who provide live entertainment as their focus close their doors. Not because of a lack of quality. Not because of a lack of effort. Simply because people have stopped going out and appreciating the importance of a live event. If this trend continues we will be in a position to say "Back in my day we could go see a comedian/band/entertainer LIVE at a club for a great price, have drinks in our hand and enjoy a night out with our friends. I miss those days." as the only remaining options will be the isolation that is downloading what is available to "enjoy" from the privacy of our homes.

I truly hope this doesn't happen but it will take our generation going out and keeping these options alive for it to continue... our kids are watching.

If you've never been to the comedy club, I highly recommend going. Every weekend there is world-class comedy. Comedians who are making their way to the very top - or who have been and are on the very top. Maybe you haven't heard of them, don't let that stop you! Go check them out, enjoy a cold drink and a good laugh. Enjoy time out with your friends. Keep these treasured places an option for the next generation and the one after... by being there while we still can and supporting live events.

Start tonight, at the Jukebox you'll find Auggie Smith. If you haven't heard of him he's hilarious - a favorite of the Bob and Tom Show (and our club!) he's been on Last Comic Standing and has a couple comedy CD's out too!

Next weekend is super special because for the 15th straight year the Jukebox has held it's annual amateur comedy contest - the semi-finals are next Friday and the finals are Saturday. Amateur comedians come from all over to participate, you'll be impressed with who's made it to the semi-finals and finals with the dreams of being a stand-up comedian.

September continues with the hilarious Rick Gutierrez and Earthquake - top notch comics with a long list of credits and accomplishments to their name. If you haven't heard of them (excuse me while I get up off the floor from shock) simply go to the website and learn more about them.

I hope you'll head out tonight. There are 2 shows with Auggie 7:15 and 945. While I strongly encourage making reservations, if you pop on in tonight I promise Dan will find you a great seat for an outstanding show :-) Dan's pretty awesome like that... just ask my kids (or me)!.

Make it a point to go, while there is still the opportunity in an every shrinking field of live event options - comedy clubs are a very rare business anymore. Let's not lose the treasure we have because technology took over.

Thursday, August 11, 2016

Angels among us.

Last weekend I drove to Iowa with my cousin Travis to see the band Alabama play at the Mississippi Valley Fair. I grew up listening to their music and they didn't disappoint even though my all time favorite Alabama song - Angels Among Us -  was not played.

I'm a believer in "everything happens for a reason" and can't help but think that the reason this song was not played was because I didn't need to hear it sung by Alabama but to witness it in my time of need, to be reminded first hand that there are real life Angels among us.

As I was driving home from Peoria last night, the check engine light came on in my van. My van that I love, with 119,000+ miles on it that I pray will start and run safely every single time I need to get in it, the van that loves to surprise me with something every month or so that needs attention, the one that I swear I will be paying on for eternity, the one I can in no way afford to replace... my van, sigh, the check engine light was lit up like a neon sign.

I immediately pulled over to grab the manual, the one that's pages are no longer bound to the binding of the book from how many times I've flipped through it praying to find an "it's nothing, don't worry" answer (FYI - that answer is nowhere in the book). It said what I dreaded... I needed to have it checked immediately.

So, I waited. Well, a little. I drove home and settled in for the evening. I prayed and prayed and then fell asleep praying that today when I woke up and went to go somewhere that the light would no longer be lit up.

That, however, did not happen (does it ever?!?) so I called the dealership who was fantastic enough to get me in today to run a scan to see if it was actually something and if it was something was it something that had to be repaired now or something that could wait.

With both kids by my side, we went to the Art Hossler dealership. What I love about being in our small town is that we know at least half of the people working there :-) They greet us with smiles, they are understanding that it will take Parker time to get out of the van - and leave it in their hands - and go sit in the waiting room. They talk to the kids, addressing them by name - asking about things they like - it's exactly what you would expect from a small town dealership. They also know, I'm broke. Not just kinda broke but seriously in debt, struggling to breathe, stretching every single penny broke. And, yet they are amazing to the kids and I and respectful of my situation.

We settled into the waiting room with a few other people - all very nice and polite. Parker was clearly anxious so after explaining that we could not talk to Dan on speaker phone because that was not polite, we gave him a quick call. That's the amazing power of Dan - after Parker says "hello" and hears his voice, it's ok to take him off of speaker and let him talk just to me - just knowing he's on the phone is calming. After our call, Allison hung out on her phone, listening to music while I kept Parker entertained.

For a few brief minutes early in our time in the waiting room, there was a lady who was a computer teacher for Illini Bluffs working hard preparing for the upcoming school year. The older gentleman who would later talk sports with Parker also talked to her which is how we learned that. As they talked computers, another lady, one with the beautiful necklace who had earlier offered me a chair as I was sitting on the floor next to Parker, said the best way to understand or fix an issue on her computer was to ask her grandchildren or great-grandchildren. Everyone smiled and I was more relaxed knowing we were in a room of understanding people.

There was some conversation in the room and as people left and moved in and out we re-arranged our seating. The nice gentleman who was sitting where we ended up  briefly talked sports with Parker even saying "da Bears" which left Parker (and this gentleman) grinning ear to ear after an employee walked by asking Parker about sports scores.

Jenice came in to let me know the results of the scan and the price tag associated with the repairs. The older gentleman and the lady with the beautiful necklace were still in the room with us as a younger man and the computer teacher had both already left as Jenice quietly talked about what needed to be done with me. There are some things that you simply don't have options with, the safety of my children is one of them for me. I  had to have the repairs completed, they had everything on hand and could do it now. With a deep breath, I told her ok. It was not a horrible price tag but it was everything I had saved for the next 2 weeks to get us through.

As she left, I opened the calculator app on my phone and quickly started adding up what bills had been paid, including this to be sure I wasn't going to be overdrawn... again. While I was sure I was in the clear because this money had a different purpose, it was more than I had saved back and needed to walk through the numbers to be sure as I fought back the tears that were welling up in my eyes.

I never imagined that at 42 I would not be financially stable and prepared for any bumps that came up on the way. I have always worked incredibly hard but getting ahead hasn't happened. As a single mom to 2, one with challenging special needs, staying above water is not even possible yet, let alone getting ahead. This was not part of my life's plan and it's the most embarrassing and crushing to me. It's difficult not to feel as though I am failing as I sort through mounting bills and look ahead at required expenses.

As Parker talked my mind raced with trying to figure out what bills I could re-arrange, hold off or pay less on to now be able to find this amount of money again without having to call my parents. Because, despite their willingness to help, this is my responsibility. I'm a bit stubborn and extremely proud - asking for help does not come easily - at all, ever for me. Plus the amount of my IOU to my parents is reaching ridiculous proportions - even if they aren't tracking it, I am - determined to one day pay them back.

I stopped thinking about money and started responding to Parker. I knew if I kept thinking the tears would certainly start falling and crying in public for that horrible feeling of feeling that I am failing at being an adult is not my favorite thing. Parker, at 17, is (thankfully) always in need of attention and fantastic at changing my focus.

I stopped thinking about my bills and focused on what I would have to do and kept Parker entertained and then on getting Allison to her pizza party. At Parker's request, we waited outside for her dad who graciously picked her up to take her for me while we waited (to her embarrassment... in the fire truck as he was working. I'm sure I'll stop laughing at some point over how mortified she was. Who wouldn't think that was cool?!? A 13-year-old girl apparently). I took a moment to be thankful to be on good terms with my ex-husband and able to call on him to help with the kids in unexpected moments like this.

After she left, Parker and I walked around the showroom. He was too anxious to go sit back down in the waiting room, other people had come into the room - he just couldn't so we didn't.  We walked around and I peaked at sticker prices knowing that I have to get my credit in check as my van isn't going to last forever. I estimated payments in my head and tried not to look as overwhelmed as I felt knowing how far out of my league this soon to be necessity will be upon me. As we finished walking as far of a distance as we could away from the $75,000 car in the showroom as I joked to Parker that I don't even owe that much on the house Jenice came back to let us know our van was ready to go.

We walked back to the bay, she pointed to where the van was and I told Parker that I had to pay first. Jenice looked at me and said something to the effect of "there's no bill." Confused, I said "What?" because zero was not the number written down that she showed me previously. She said, "It's been taken care of." I don't recall each comment back and forth as what she was saying was starting to sink in for me. My eyes were filling with tears. When I asked "who?" she said, "I cannot tell you, we promised we would not. It was someone from the waiting room, a lady who asked to do this but insisted we not tell you who. She did not want the attention or thanks, just to do this for you." Given that only 2 people were present when Jenice came in and only 1 was a lady it was easy to narrow down to the lady with the kind smile and beautiful necklace. I instantly wished I had talked with her when she offered me her chair instead of focusing so much on Parker.

I understood and could respect her wish to remain anonymous. I cannot do a lot for others but what I can do I will but never for the thanks, simply because it's what my heart wants me to do. I could respect that, even though every ounce of me wanted to tearfully go into the waiting room and see if the lady with the beautiful necklace was still there, hug her and tell her that the money I was going to have to use for this repair was the money I had saved to buy school supplies for my children and our groceries for the next 2 weeks. That no part of me can explain the sense of relief knowing I can do these things without falling further behind on something else. That she truly was an angel in my very dark moment, showing me the light of above. I also knew that was exactly what she did not want to happen - so, instead, I tearfully hugged Jenice and asked her to pass it along with my sincere thanks as this was a tremendous gift for us.

Jenice told me of a radio broadcast about overfilling the cups of others and how this fit so beautifully into that message. A message we should all learn to live by.

I cannot do a lot for others, I am simply not in the position to at this point in my life. I hope that when I "grow up" I am in the position of this angel and able to help out someone who tries to hide the overwhelming news of an unexpected bill.

Until then I can still continue to pay it forward in small ways, something I've always enjoyed doing - small things to brighten someone's day... paying for the meal behind me in the line in the drive through, shoveling someone's driveway, mowing their yard, helping carry groceries to a car, opening a door...not for the thanks or recognition but because it's what we all should do, being a little kinder, reminding others someone cares - not for the attention or thank you but because it's the kindness we all should show for each other.

While I do not know the name of the angel who made such a tremendous impact on my day, odds are someone who reads this may. My hope is that if it's shared enough, my thank you will get back to her, that she will know that she helped us in such a huge way I'm still in tears over 5 hours later and am incredibly grateful for her kindness.

I am NOT asking anyone to name her, she did not want that and I would like to respect that. I simply want this thank you to get back to her so she knows how very, very much I appreciate her thoughtfulness and to thank her, so much, for being an angel among us.

Friday, July 1, 2016

An Open Letter to the CHS Class of 2017

“An Open Letter to the Class of 2017”… I’ve seen several of these cross my newsfeed lately. All well written, all filled with great advice on living life to the fullest and soaking in every moment of your senior year – all of which I encourage you to do. Ever since the first one crossed my newsfeed though the following has been in my mind, this is my open letter to you – CHS Class of 2017. I hope you will take the time to read it.

An Open Letter to the Canton High School Class of 2017 –

I don’t know how we got here but we are here, the summer before your senior year of high school. Your senior year, I cannot grasp how that is even possible but you are not going to stop telling me that you are seniors so I guess, like your parents, I will accept it too (even though I don’t want to).

We’ve been through a lot together over these past 12 years, it’s been amazing watching you grow into the incredible young adults you have become. You have welcomed me into your classrooms and your lives since grade school, taking the time to learn about Parker and the syndrome that brings such challenge to his life. You’ve taken the opportunity to ask questions, write papers and learn more on your own about Fragile X Syndrome. Most importantly so many of you have become real and true friends to my son, for which I will be forever thankful. Every year you amaze me even more than the last, I speak about your acceptance and friendship as I lecture across the country to people educating them on Fragile X. Possibly without realizing it – you have inspired thousands around the world.

We are half way through summer vacation, it’s not been the easiest for Parker but honestly it’s probably been even harder on me. Parker has asked frequently about “graduation” and “where his friends are” – it only took a couple days out of school for him to start missing you. It’s also the first time he’s talked about graduation and I am sure by the look in his eyes he knows that it means you will not be returning to CHS which is, honestly, crushing me.

I’ve spent many days reassuring him that you have not yet graduated and you will be back in August with him for your senior year. We talk about homecoming and prom (he’s already asking who his dates will be!) and we talk a little about graduation. He asks daily for his friends to come over and for the first time in his life I’ve heard him say “I don’t have any friends.” when no one is available. The reality is he has many and you are all incredible (which I remind him). You are also busy with camps and work, I tell him daily he needs to get a job like his friends.

It’s made me realize, however, that after this year it will be harder to explain where each of you are and how your lives are so different.

I want to back up a minute to a couple of moments in time that I will never forget, I am sure many of you remember them too.  At the end of 4th grade, as we were preparing Parker to transition with you from Eastview (grade school) to Ingersoll Middle School you asked what it would be like for Parker. Would you still see him? Would he have classes with you? Would he be scared? Despite my nerves about this transition, there was comfort in knowing that you were going to be there with him for this experience. You helped me create a video for him to watch about the new school and made sure to talk to him in your classes together. I continued to come in and talk to your class – now much bigger with students from Lincoln and Westview added in at the Middle school – about Fragile X Syndrome and Parker. Many new and amazing friendships were made in your 4 years at IMS for Parker – it was really a great experience for him.

I came in at the end of your 8th grade year, we opened the partition between the classrooms for me to be able to talk to all of you at once about Fragile X. When it came time for questions, they were no longer about the new things I had shared expanding on your knowledge of Fragile X but instead the questions were about Parker going to high school.

I remember so clearly the look of worry in your eyes about how he would do. Would you still get to see him? Would he be in any of your classes? How would he know where to go? This time, I was not the only one with tears. There were questions I did not know the answers to, all I could do was promise you there would be opportunities for you to see him and that I was going to need you to help him, to watch out for him and to educate others to help them accept and understand him. I promised you I would always be here and you could always still come to me. You promised me you would be there for him and you have been – in so many supportive and outstanding ways that, again, exceeded my expectations.

In the past 3 years at CHS you have included Parker in many ways. He’s at every dance with a beautiful date on his arm (he truly wishes there were more dances!). You celebrate his victories and don’t let him get by with trying to get out of anything! (Thank you!)

He’s watched you learn to drive, excel at sports and academics and knows more about each of you that any of us will truly know. He’s given many of you nicknames that have stuck and make him giggle. You go out of your way to say “hi” or talk to him not just at school but when you are out around town too. You have made him feel very much a part of your class and he thinks very highly of each of you. As do I.

While some of you have already asked, I am sure not everyone knows but am happy to answer the question “what will happen to Parker after graduation?”  The general, vague answer is that he will, providing he is willing without you being there, return to CHS continuing schooling until he is 21. During that time we will focus on job skills and independent life skills. After that – I don’t know. I wish I had this grand plan but the reality is I don’t know. I know he will have a job, maybe 2. He will be in our community. I know that if he wants to take some college classes I will be sure he has that opportunity. I know that my goal for him is to be living as independently as possible either in a group home or with friends and a caregiver around his 25th birthday. Not because I don’t want him here – because trust me, I do! – but because I need to see that he will be ok on his own without me. The reality is I won’t be here forever, none of us will. My job, as his mom, is the same as your parents – to help you become independent and responsible adults. It just looks differently for us.

My question for you is what will happen to Parker’s friendships?

I’ve never held back from challenging you and I’m not about to start now. I do want you to take time to really think this through as you only have one chance to be a senior at CHS.

This is your senior year. This is your opportunity to make the most of every day. This is your opportunity to make this the best year not just for yourself but for everyone in your class. This extends beyond Parker – the opportunity to make sure every single person in the class of 2017 has the chance to live and love every moment of this final year together.

You have 10 months and it’s going to fly by. Parker will walk the stage with you, his classmates, and graduate in the spring with you. I will need your help but we will make it happen. He wouldn’t have it any other way, neither would I.

Until then I am asking that you think of the things you love – going to football games, basketball games, baseball games – cheering on our Little Giant teams – and include Parker and those who may not have had these opportunities. Trust me, Parker would much rather go to a football game, sit and hang out with his friends than with his parents (I’m sure you understand that!). Off campus lunch – Parker would love to go grab lunch with friends and eat outside of the cafeteria – he just needs someone to take the lead. Best Buddies/Club Unify… JOIN. I am, begging you, join. This was once a thriving program at CHS and now it’s basically non-existent. CHANGE that. Be there. Be involved. Make the Buddies/Club Unify basketball game versus the Special Olympics team the amazing experience it once was. Go to a Special Olympics game, cheer on Parker and his teammates. Make this year the best for every single one of you… because even though Parker will be returning to school in the fall of 2017 – it won’t be with you. We won’t get this opportunity again. This is your senior year, this is his senior year. The time you put into it making it the best for everyone in your class will create memories that will last a lifetime.

When Parker returns in the fall of 2017, he won’t have you. I don’t know how he will do knowing you’ve went away to college or work and he’s continuing high school. I need help. I need to be sure the underclassman have the acceptance and understanding that many of you do. Together, we need to teach them the importance of accepting, understanding and friending someone with a disability. We need to know there are still good hands to leave Parker in.

This brings me back to my question – what will happen to Parker’s friends? Your friendships will change, it’s part of life. Some will remain friends, others will drift apart. Some will move away and others will stay. Regardless you will all move on to careers and families with time.  What I am asking of you is not to forget Parker. To come hang out with him when you are home on break from college. To keep him in your life as you move beyond college and begin your career and family. To remember that he will always be this very happy spirit who thinks the world of every friendship he has. He will always want to tell jokes and talk sports. He will always be happy to have you visit. He’s always happy to go out to eat or to a movie J  Like you, he will always want and need friends. Remember him when you have reunions, he will want to see you again too.

Like your parents, the future scares me. You grew up way too fast for us. We blinked. We tried not to but it happened. We blinked and you grew up.

I worry, more now than ever before about Parker’s future. As your parents will worry for your health and safety, I worry for his. He will always be in the hands of someone to care for him. I read stories almost daily, too many times from people I know, who’s adult children with Fragile X are living in group facilities and are mistreated or beaten. One of my greatest fears is someone will hurt him. There is a chance Parker will never be able to communicate with me – or anyone –if someone is abusing him or be able to answer where bruises came from. It is a significant amount of trust I have to have in the people in this world. Those individuals will include you. You will be part of the generation that helps care for Parker and individuals with disabilities, who employs them, who treats them medically – your future careers will likely involve, or have the opportunity to involve, working alongside of, hiring or treating someone with a disability. Just as you have Parker, I ask that you give that person a chance. Help them, encourage them, believe in them and you will see great things from them. The world is filled with a million “Parkers” giving you plenty of opportunities to make a difference in the lives of someone. I hope you see a bit of Parker in each of them too and make a positive difference, just as you have for my son.

As you go forward into your senior year, know that you have made a difference, that you have inspired many across the world. Make this year count more than you ever have before. For yourself and for Parker. And please, after you accept that diploma next spring, promise me you’ll keep Parker in your life and continue to make time for him. I can’t imagine him facing this world without you.

Keep doing what is right, keep standing up for others and being a positive voice. You are going to go far and do outstanding things. I have no doubt.

Thank you for the memories of the past 12 years. You have been a huge part of the success Parker has had and the ones to come. I am and will always be forever grateful. I am excited to see what this final year will bring for all of you!

Enjoy the rest of your summer – come visit Parker, he’s asking each day for company and I’m yet to talk him into getting a job. Make the most of your senior year, it’s going to go by fast – take time to stop, look around and soak it all in. There is an amazing year ahead for all of you.

Keep on changing the world, we need more positive people who are not afraid to do the right thing and make a difference. You have it in you – let it shine.

Parker’s Mom

Parker was born with a genetic disability called Fragile X Syndrome. Fragile X is the leading inherited cause of intellectual disability and the leading genetic cause of autism. To learn more, please visit !

Tuesday, June 21, 2016

Discussions with my daughter - I see me!

Oh my beautiful daughter, your entire life you’ve been told you are the mini-me of your Aunt Heather. You look, honestly, identical to how she did at your age. The older you get, the more of her I see in you. Facebook automatically tries to tag her each time I post a picture of you. So many of us even call you by her name, we just can’t help it – it’s not just that you look like her, you are in so many ways her.

You share Aunt Heather’s love for riding, horses and all animals. You have a special way about you that animals trust. You share her love for reading (although this is new for you!), for sleeping in and for spending time with grandma. You both are incredibly smart which is reflected in your academics, you don’t like conflict, drama and both love to sing.

Really, of all of the people in the world, being Aunt Heather’s mini-me is pretty awesome – I know I am incredibly proud of you both and love that I see so many of her outstanding qualities in you. I’ve always thought it was pretty cool that I could see so much of my little sister in you. You are both beautiful young women, inside and out.

As much as I love this – I’ve also sometimes struggled that I couldn’t see any of me in you. I see your Aunt Heather. I see your Aunt Dawn. I see so many people I love and cherish but a tiny part of my heart was sad that I couldn’t see any pieces of me in you. I watched and watched looking for a reflection of me. The more I would watch the more I’d see other people (all good things – you are surrounded by some really awesome people!) and wonder how there could not be anything about myself I saw in this incredible young lady I was raising.

And then, one day it happened in what probably should have been the most expected way yet it took me by surprise while I beamed with pride.

You’ve always stood up for others, including your brother. Your voice is significantly stronger than mine was at 13. You’ve done so firmly but gracefully – yes, just like your mother – but I had not seen it, only heard about it from others until that night. As hard as it is to use your voice with your peers, it’s even harder with an adult – especially one you care a lot about. But that is what it took for me to see it – for me to see a piece of me inside of you.

You were told that “Your brother is not normal” and like a bolt of lightning, with my laser eyes, you put your foot down and defended your brother as if your life depended on it.  And, in some ways it did. While not everyone will understand that and I cannot explain it – I always will get it.

I am not going to lie, while I did the right thing as your mom and stepped in to “save” (seriously save even though that will never be appreciated or acknowledged) the other person, I also did the right thing by telling you how incredibly proud I was of you – and I still am. You used your voice. You defended someone who could not defend themselves. You dug in your heels and held your ground. I stood back and smiled with pride in the amazing person you have become.

I also, for the first time in a very long time, cried although not in front of you. I cried because I finally could see it. I could see me in you. I saw my determination. I saw my voice. I saw my ability to appear to stand strong when I was shaking so much inside all I wanted to do was walk away and cry. I saw that there is a part of me in there and it’s a part I love. It’s a part of me that took years to recognized and let out but just like you – it was your brother who brought it out in me.

You are an amazing sister to your very special little, big brother. You are his voice, his translator, his defender and his go to person. You’ve grown up faster than your peers because our life has been different than theirs. You’ve missed out on many things. You’ve had to walk away from things that you wanted to stay for, you’ve been embarrassed, angry and on the verge of disowning him more than once. You’ve also been given a life where you experience more – although different than I ever would have dreamed – more. Your life has blessed you with a gift of seeing the world differently because of the challenges we face. Our “normal” is something the outside world cannot see as “normal” even when some of them really, really should. This has and will continue to make you an amazing person and true gift to our world. Your kindness, your understanding, your patience, your acceptance and – that part of me that I am so proud to see in you – your voice will make this world a better place.

I still love that you look like your Aunt Heather and that I can giggle when I see your Aunt Dawn’s temper come out. I love that you are a beautiful representation of all of the incredible characteristics of so many amazing people in your life who I love and respect. I love that you see your brother as “normal” because, really – what is “normal” anyway…it’s not even a setting on our dryer!

I love that I see so many, including me, in you. You are an amazing, strong, intelligent, beautiful young lady who will have the strength, determination and voice to change our world making it a better place. I could not be more proud but I’m sure you’ll prove me wrong there (again, a place where I see me in you! ;-) )

Sunday, May 1, 2016

Destination Prom... We did it!

I never thought this would be so difficult to write about. This was one of the best days of our lives. This has been life changing and amazing every step of the way. I am proud, happy and in awe of the entire experience. I guess my fear is not being able to express it in writing in a way to truly encompass the incredible journey it has been. But, I have to try. Not sharing this journey would not be fair to the thousands who have followed it and to the millions of lives it could inspire. Ok, *millions* might be a stretch but after the past few months... you never know! 

In case you can't wait... yes this ends well.

If you read completely through... you'll also find the video version ;-)

Understanding the past
Parker was diagnosed with Fragile X Syndrome in late March of 2003, just 6 weeks short of his 4th birthday, in the spring when the world around us was coming alive after the long frozen Illinois winter.

Late March through mid-May has become the time of year that is most difficult for me for many reasons and not just because all of the blooming trees, flowers and grasses drive my allergies insane. Almost every special needs parent I know can tell you the very moment they received their child's diagnosis. Despite searching tirelessly for an answer for Parker, every specialist had told me he was fine, I was a neurotic first-time mom. I wanted to believe them but my heart knew they were wrong so I kept searching. His diagnosis came as a relief that we had an answer (and that I was not insane) and a heartbreak all at once, it makes late March a difficult anniversary that isn't celebrated.

Parker's birthday is May 4th. One of the best days of my life, a day I had waited a lifetime for. He was and still is, absolutely perfect in every way. He and his sister are ones I celebrate every single day of the year.

Yet as each year goes by I see him fall further behind his peers. I see a young man, almost 17 who faces (and conquers, mostly) significant challenges every day - challenges I had believed he would be cured of by now. Each year that passes, I have to accept his future won't be as independent as I had once dreamed it would be for him. Each year that goes by I am reminded of the little boy inside of him who still believes in Santa that lives inside of the body of the young man he has become while I watch his peers get their license and prepare for college. Each year I wonder if the friendships in his life will remain after they go on with their lives or if, with time, he will be forgotten and alone. Each year he turns another year older, I am reminded that I too am aging and will not forever be here for him which scares me most of all.

Spring brings our world to life, kids are out riding bikes, playing baseball and... going to prom. Each year it takes me back a little bit as I hurt for the experiences he will never know and wonder if there is any possibility that he could have them. Prom was a time I hid from, I avoided social media for a few days each year - a little less as Parker got older but enough to not let it hurt me to see. I had no idea if this was an experience he would ever have.

Like every life experience for my children, it has to be what they want. It's not about me. It's not about my wants. It's about their lives, becoming their own people and supporting their wants. It wouldn't matter if I wanted Parker to go to prom, if he didn't want to go, it wasn't going to happen - which is how it should be, disability or not. But Parker... well, Parker loves school dances. He's not much into dancing but he does a little, he's mostly into the beautiful girls (uh huh... 16 years old in many ways, no matter the disability!) and time with friends. He looks forward to every single one of them. But there is a difference between a school dance, like Homecoming, and prom. A big one. Prom is not just a dance, it's an event.

Last December as Parker and I were working on the 2016 calendar he kept asking when the dances were.  I said, "Well, in April there is prom...."  He didn't care what prom was, he only cared about getting it on his calendar and figuring out who his date would be. I, however, was not ready. We did not have any details from the school other than the date at this point - it was way too soon to put significant thought into it. Parker obsessed about it, asking each day for details while I ignored it, praying time would stand still so I wouldn't have to figure it out.

During Christmas break we had lunch with his friend, Drew. Parker lit up talking about prom and asked repeatedly about who he would go with. Drew gave me as much detail as he could which I made a mental note of. I told Parker we were not allowed to talk about it or find a date until the end of January. That only sort of worked, he still asked about it every day at least I had a solid answer to get us by.

Before we knew it, it was late January, the note from the school arrived in the mail detailing everything about prom imaginable (it was 3 pages, front and back long!). I could not put it off any longer, I had to figure it out.

So, at that time, I made Parker a promise. If you know me at all - you know that I only say the word "promise" to my children if I know I can make it happen. I had no idea how I'd make this happen but it meant the world to him so I knew that no matter what it took, I'd find a way to make it happen. That is, after all, what moms do.

Finding a date, A mom's promise
Each time there is a school dance, I help Parker find a date - the easiest way I know how... Facebook. I post a status that Parker is looking for a date and one of his amazing friends always responds ready to step up and be his date. Every time. His friends are amazing!  While it's always turned out well, it's still an incredibly difficult thing for me to do. I don't think people realize how difficult it is to ask for something that is, in our lives, so big - especially knowing how important it is to Parker and knowing that there is a chance no one will respond.

Asking for prom magnified my anxiety times a million as I typed out that status saying I had a handsome 16-year-old son looking for a prom date. While friends from way too far way quickly chimed in that they'd love to help - we also knew it wasn't possible. I smiled through the chatter as my heart sank a bit more with each passing minute as my fear of this not working started to feel like a reality.

If you follow my blog or Facebook page, you already know what happened next.  Parker's friend Rylee text me that she wanted to go to prom with Parker. She took it a step further by asking if she could surprise him with a promposal the next morning by giving him a tie (he loves ties!). Knowing this could easily backfire as Parker hates surprises, we gave it a try and ended up with an amazing few moments caught on video that went viral for the world to fall in love with.

Rylee and I quickly became flooded with messages from all over the world from people of all ages who saw the video. While we were both taken aback by the incredible and positive responses, the person inside of Rylee that I knew showing who she really is came out. She said, "I have no idea what the big deal is, all I did was ask my best friend to the prom. I didn't ask a "kid with a disability". I didn't feel sorry for him. I don't see his disability. I just see my best friend."

Having watched Parker and Rylee's friendship grow over the years, I knew from the start where her heart was. She's always been by Parker's side. She comes over to swim during the summer. We go to movies together. They hang out and play Wii. She's never missed a birthday party. She's always there. She doesn't treat him any differently than she does her other friends. She calls him out when he's trying to get away with something. She pushes him to step outside of his comfort zone. She encourages him and cheers him on. She's been that friend from day one. She's not his friend because it would bring attention to her but because she has always seen beyond his disability to the person he is.  And while I still don't think she fully realizes it, that's an incredible and beautiful gift that not everyone has.

It didn't matter if I was going to document this journey through my blog or Facebook or not, Rylee was not leaving Parker's side and was going to do all she could do be sure he had the best prom ever - helping me through each step of the way to prepare him. That is the difference in Rylee and the proof behind knowing she wasn't doing this for the attention or kudos, she simply wanted a great experience for her very good friend. This wasn't about her, it was about him and about them enjoying their junior prom because he deserved it just as much as all of their classmates.

That is not the heart and spirit of someone looking to do something for the attention or kudos. That is the heart and spirit of someone who is an amazing friend. That is why the world needs more Rylee's. 

Preparing for prom
The last 2 1/2 months have been more planning and coordination of multiple people than I can even explain. It made finding Parker a date a cake walk. I had no idea what I was getting into when I reached out to the school to help me plan and prepare Parker for prom.

Prom is an "event", seriously an event, for every parent with a million details to check off the list.  For me, it wasn't just making a list to check off though, it was making sure Parker was prepared and understood each step that would be checked off. Working with the prom advisors, Mrs. Eberle and Mrs. Schoonover, Parker's teacher Mrs. Vohland, the principal, Mrs. Watts and his para-pro, Mrs. Wildebour I discovered just how long that list was.  I also discovered that every person at the high school wanted to see Parker succeed and would do anything they could to make that happen and followed through with it. To say they were amazing and a huge part of his success is greatly misrepresenting the value of what they did, their dedication and support. It's also all I have at the moment to describe how fantastic they were.

We put together plans for the tux fitting, for preparing for the dinner, for practicing grand march, for who would be chaperoning and able to assist Parker if needed.

We discussed everything from the Grand March line up to a quiet place for Parker before and after Grand March to decompress to the steep stairs at the prom location and everything in between.

This is life with Fragile X. Planning. Preparing. Every detail. The more prepared Parker would be, the more likely prom would be a success. You would not believe the details that go into prom ... I didn't and am thankful to the guidance of everyone at the school to be sure every detail I had no idea existed was covered. I am, tremendously thankful.

Parker loves dances so I never really worried about "that" part of prom. The bus ride, the dinner, the dance... I knew that would all be fine. We'd review because it was the first time he'd be taking a bus to and from a dance and eating food they served versus going to Pizza Hut but I had no concerns over that portion of the night. My worry was all focused on Grand March. (you can read details on that here) We (the school and a couple of Parker's friends - not me, I simply reminded them to be there!) spent every day at lunch practicing the week of prom. Practicing in the empty auditorium during lunch is one thing. Actually going through with walking across the stage, stopping in the marked spots for pictures in a sold out auditorium of cheering people under a spotlight would be another. That's simply not something you can prepare anyone for until it happens.

The Big Day
In the blink of an eye, the 2 1/2 months we had spent preparing and practicing dinners, walking, opening car doors, getting fitted for a tux was here. We were, confidently ready.  And secretly (or not so secretly) nervous. 

Parker was, of course, up by 6:30 am.  Ready for his shower and to get dressed. He was begging to put his tux on before he even ate breakfast. (I said no to that one). He was anxious. Waiting all morning was not easy. We called Rylee for some encouragement, a simple reminder from her that she would meet him at the park at 1:30 for pictures. Hearing that from her was significantly more calming that hearing it from mom. She was more than happy and willing to have that talk with him. It worked and settled his nerves.

We quickly learned that I had no idea how to help Parker shave. His dad had sent a razor and, in all fairness, I tried repeatedly but it wasn't working. His dad was out of town for the morning so I called my friend Kim asking if her husband (who Parker adores) was home and interested in lending us a hand.  Sure enough, within a few short minutes "Hotdog" (known to others as Jeff) was there to save the day. (It really does take a village...)

As we were getting ready to go outside to throw the baseball around for a while to provide some sensory input to help calm his nerves and redirect some of his energy, Rylee text asking if she could stop by.  She had just finished getting her hair done and wanted to show Parker.  It was, exactly what he needed. You could see him relax, nerves leaving and excitement returning.  

Before we knew it, it was time to get dressed so we could head to the park to meet Rylee for pictures. Grandma and Grandma had arrived. Grandpa helped Parker with the finishing touches of getting dressed. 

When we arrived at the park, I realized a step I had not prepared him for... how many people would be there taking pictures.  His nerves struck as it was time to get out of the van. This was bigger than just pictures with Rylee, this was tons of people all with one of Parker's least favorite things... cameras, in hand.

In this magical way that always seems to happen, Parker's friend, Drew, appeared.  Sometimes I think he has a Parker sensor built in as he always has a habit of showing up when Parker needs a hand or some extra encouragement. Like always, there he was to let Parker know this was all going to be ok, encourage him to get out of the van and then after some advice, give him a hug before handing him over to Rylee. Drew is... amazing.

From that point on, pictures went incredibly well for a young man with Fragile X who struggles to look at people and be the focus of attention. While there were many reminders to "open his eyes" and "look at us" it was easier to forget that this was my son with special needs and remember, this was simply my son - the one I see when I look at him each day, who is the greatest son I could ask for getting pictures with friends for prom...just like everyone else. 

 With a couple hundred pictures out of the way, it was time to send Parker and Rylee off to the school for Grand March. We waved goodbye as they drove off to the school.  It was all in Rylee's hands now. I would see him briefly but only to peek in and say "Hi".  Getting to school, in school, to pictures with the photographer and back to the quiet space to hang out would all be on Rylee's shoulders. She didn't mind a bit. They were ready for this!

I peeked in on him at the school, he and Rylee were hanging out with Mrs. Vohland waiting for Grand March line up. Doing what all 16-year-olds do... surfing the internet and taking selfies - sometimes, "normal" is incredibly nice.

I took my seat next to my parents as the lights dimmed in the auditorium. Parker and Rylee were number 29 in the Grand March line up. Intentionally near the start - but not the very beginning. Far enough back to be able to listen and watch others but not so far back that anxiety would overtake him during the wait. He was sandwiched between his friends, Preston and Jacob and their dates. Just as they had practiced, they were there to remind him he could do this.  Rylee was, as always by his side. And, while Parker was completely unaware, Drew was strategically placed to be able to step in and lend a hand if needed.

Our goal and best case scenario was Parker would walk across the stage with Rylee by his side stopping at each of the indicated spots for photos. He had practiced keeping one hand on his stomach, this was the arm Rylee would hold onto. No matter what happened, he could not move that hand or "Rylee would fall" and we did not want that.  The other hand was placed in his pocket.

Worst case scenario he either 1. would not go out onto the stage or 2. would go onto the stage then drop to the ground laying on the floor not moving.  A common thing we've seen throughout the years when he is overwhelmed. While my heart said he would not do this, I knew I couldn't completely rule it out (even though I had told everyone else it would absolutely not happen) because... well, fragile x.

After what felt like an eternity and also the blink of an eye, it was time for Parker and Rylee to take the stage. I held my breath, my heart stopped and time stood still as I heard their names called. This was the going to be the biggest challenge he's faced in life up to this point and he was going to make it dramatic for me with a long pause after his name was called...

This was the first time, the entire day, I finally let myself cry. He did it.  THEY did it!  I don't believe he would have done this without Rylee by his side.

Did he cover his ear and then his face? Yes. Do I care? Nope, not even a little bit. He did what we had hoped, he walked nicely across the stage, he paused at the right places, he never once let go of Rylee. This was the most amazing moment. This was a huge, really huge success for Parker.  There was extra cheering as they came out, made their way across the stage and walked out.  The majority of the people there know Parker and knew what efforts had led up to this and recognized it for the tremendous success it was.

I was not the only one with tears of pride and happiness that afternoon. I was not the only one who was overwhelmed by the accomplishment and understood it's significance. This is a community that has watched Parker grow up as I've openly shared our struggles and triumphs, they've been by our side. This was not just a victory for Parker, or for Parker and Rylee, this was a victory for every teacher, parapro and community member who have worked with, supported and encouraged Parker over the years. This was a moment where the village that has raised him, celebrated for him an accomplishment that that is larger than life.

This was a reminder for every parent who has a child with a disability that anything is possible, even walking the stage at Grand March.

Most of all, Rylee knew how huge this was. While she simply asked her best friend to prom, she knew that came not only with work and preparation but with the potential for Grand March disaster. While I believed in my heart it would be fine, I had to realistically acknowledge and prepare everyone for the worst too. There was not a single moment where Rylee hesitated to not do this. She believed in him and it showed throughout the entire time we prepared and most of all it shined through that night. 

Photo courtesy of Christy Ault Churchill
On the Grand March stage, in front of a sold-out auditorium, when Parker's hand left his pocket to cover his face - Rylee was there to let him know it was ok. She never let go of him, she looked directly at him not with fear and doubt but with a smile to remind them that she was right there and that together they had this. She wasn't leaving him. She didn't care that his hand was covering his face.  She led the way across the stage. He trusted her and followed. To me, the picture below says it all. She didn't hesitate, she didn't panic or worry, she didn't look to the crowd, instead with pride in how far he had come she simply focused on her friend, holding him tighter, smiling and reminding him that together they could do this.  This is one of my very favorite pictures of the night, it says so much.

Photo courtesy of Christy Ault Churchill

Her pride was bursting after they made it back to the classroom for Parker to take a break from the crowds until it was time to load the bus... 

I missed the rest of Grand March as I made a quick trip to Dairy Queen, as promised, to pick up chicken strips for Parker and Rylee. I delivered them, gave Parker his evening pills and told them both how incredibly proud I was. The rest of the evening was completely theirs. It was going to be a time to celebrate, a time to dance, a time to be with friends and make memories of a lifetime. And that is exactly what they did. 

Just a few of the many selfies throughout the night (Love them!)

Parker with friends, Christian, Jessie and Cole at Prom 2016
A crowded dance floor and surprise visitor!
Hanging at their table and checking out the desserts!
And... they danced <3

The details not captured in pictures.
Prom was so much more than just what was captured in pictures.  I sent multiple battery packs for Rylee to be sure her phone stayed charged without worry through the night. Which seems like a great thing until you discover what Rylee did for Parker...

Parker is a die-hard Chicago Cubs fan and there was a game on that night.  Rylee downloaded the MLB (Major League Baseball) app on her phone so Parker could follow the game on her phone. I mean we WERE excited about prom but... priorities - the CUBS were playing too!

She also did something incredibly special, those who know Parker well, know that he loves Bob Seager's Old Time Rock and Roll.  He listens to it daily and everytime we are in the car while drumming on the back of my headrest. Rylee asked the DJ to play "Old Time Rock and Roll" and give a shout out to Parker! :-) While the surprise of it all turned into him laying on the floor in the middle of the dancefloor for a little bit, it's also a video (thanks to his friend, Chris - even though Parker isn't in it) that he watches daily (and repeatedly) on Chris' Facebook Page where he can hear everyone on the dance floor singing along. An incredibly special and heartfelt gesture that is still making him smile today!

Prom 2016 has been the type of experience dreams that come true are made of. Parker and Rylee had the night of their lives. Parker loves looking through the pictures and I'm in the process of putting a keepsake book together for him. 
This experience exceeded every expectation we had and remains a solid reminder to trust in those around you. There was significant hesitation from many when I said Parker would be doing Grand March. I stood my ground with pride while doing my best to hide my own fear and concern. I approached the school with hesitation, prepared to re-write Parker's IEP if that is what it took to get him permission granted to  participate in Grand March. However, instead of being met with resistance, I was met with encouragement and support from what would become our prom team at the school - teachers who have not worked directly with Parker (but knew him) had every confidence in him. There was never even a hesitation on their part, simply welcoming arms offering to work with me to help prepare him. An amazing reminder that not everything in life is a battle, more times than not if you ask - it's a beautiful collaboration that leads to success. 
Parker's friends, family, community, and school were there for him, every step of the way. Di's Bridal was amazing with after hour fittings for the tux, CJ's Flowers perfectly tackled the custom boutonniere for Parker to match flowers Rylee had from a previous dance that matched her dress and Dave Lewis Studio who walked me through the prom picture pose and has always captured incredible pictures of Parker and Rylee.
The countless people from our community who would stop me in the store or while getting gas to let me know they were keeping Parker and Rylee in their prayers, incredibly proud of his growth and excited to see how well he'd do reminded me of the many people in our community who love and support him and want more than anything to see him succeed.
In the special needs world, it's easy to feel isolated and alone - even for me. This reminder of how our community embraces each other was very much needed for me too.

For Every Special Needs Parent
Sometimes we all need a reminder of the possibilities that are out there. It's so easy to look at what is happening in the lives of our children's peers and feel like being a part of "that world" is impossible. Prom was an event I had felt since Parker's diagnosis would not be an experience he would know. My biggest fear when he said he wanted to go was not being able to make that happen for him. Even when Rylee initially text, I was too scared to believe in the possibilities that were ahead.  With each passing day, planning and outreach my fears subsided as we enjoyed the planning and experience that led up to this big day.
Success is measured differently for everyone, we know this from the lives we lead each day. Success for Parker and Grand March was walking across the stage with his hand over his face. Success for the entire prom experience was in the amazing smile that never left his face.
For Parker, success meant having a beautiful date who he could trust. For others, a successful prom means going with friends and not a date. For Parker, success meant wearing a tux like his friends. For others, success is dressing up in nice pants and a shirt or maybe a suit. For Parker success meant being there start to finish for every minute of prom - because that is what he wanted. For others, it may mean going in just long enough for a picture or to check out the event. At one time, for Parker, a successful school dance meant we were able to pull into the parking lot of the school in the evening even though he never got out of the car to go inside - it was a huge success and just the start of many "inchstones" that lead to our prom success all of these years later. Always celebrate the inchstones, as they are, equally as important - if not more, than the milestones in life. 

Success is individual for each of our children, for each child and adult throughout the world - special needs or not. Success is individual. 

Most importantly, if you are like me and one spring day when prom is in the air you look at your very special child with hurt in your heart for the experiences you fear are impossible - I want you to remember there is another extra special child like Rylee out there with kindness and love in their heart just waiting to make a positive difference in this world. Hold onto hope, encourage friendships, experiences and never, ever give up on what could be one of the many greatest experiences of their lives. 

To the Rylee's of the World
You are out there and the more you continue to do, the better the world we all live in becomes. We've been blessed to not only have a Rylee but to have a Drew, a Mercedes, a Jessie, a Sierra, a Lee, a William, an Alex, a Faith, a Michale, a Preston, a Jacob, a Cole, a Chris and so many more amazing individuals who have been there for Parker, encouraged him and helped him become the incredible young man he is today. There are so many more, it would be impossible for me to name each of you without forgetting someone - please know I see the amazing friend you are to Parker and I (we) appreciate it very much.

I cannot thank you enough for the opportunities, joy, and experiences you have brought to Parker's life. Each dance, each birthday party, each opportunity to be just one of you - just a teenager, not someone with a disability, have had the most incredible impact on our lives. We cherish each experience and Parker, as you know, will forever remember every detail of these incredible moments of his life. You have been more than a friend, you've been a lifeline, you've been a reminder of the possibilities out there and the good in our world. You have not just brought these memories and experience to Parker's life and to our family but to the thousands across the world who have been a part of our Fragile X journey. You've touched our hearts and inspired many just by being who you are. In this great big world that can be difficult for even the strongest, don't ever let anyone take away that light that is inside you. As my friend, Melissa would say, always leave a trail of glitter. You will make our world a better place.

To Rylee.
There are no words to express the incredible memories you have given us over not only the past several years but especially the last 2 1/2 months on our journey to prom. Your friendship to Parker is what stories and movies are made of. You have the gift of seeing beyond the disability the world sees into the soul of my son and treasuring him as your friend for that incredible person he is, who is often trapped inside the mind and body of someone struggling to live with his disability.
This has been the experience of a lifetime, not just for Parker but for me and for many who have followed our journey. Your family is as amazing as you are, to see their pride in you and watch them share it with the world is something that has not only made this journey more touching to our hearts but also an insight into your internal beauty that is part of who your family is. I would have to declare it a tie in pride between me in Parker and your mom in you.
There was no way that either of us could have predicted in 6th grade at that final dance of the school year when Parker danced for the first time with a girl that the very same, sweet girl would take him to prom a handful of years later.
Thank you so very much for this experience, for believing in Parker, trusting me and giving me the faith to trust in you. We did this. You and Parker did this. And I cannot thank you enough.

What's Next...
In a couple days, Parker turns 17 and his Junior year of high school will come to an end.  What's next? A Senior Year to remember... with Senior class pictures, Homecoming, Basketball and of course... another Prom!

Every day is a part of this incredible journey of life we are on. Every day we have the choice to be kind. The choice to make a difference. The choice to do something good. Sometimes we get it right, sometimes we screw up (at least I do), but each new day is always an opportunity to start new and to make a positive difference in our world.

It's a rough world out there... do your part to be kinder and make it better for everyone who is in it. Most of all, never give up on what's important to you - the journey there may not be as easy for you as it is for others, it may have extra steps, steep mountains, and road blocks but nothing is ever impossible... 

...except maybe the birthday party Parker wants to have at Anthony Rizzo's House with special guest Jake Arrieta and as many of the Cub's roster as possible ;-)

                                              As promised... the video version of our story!