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!

Friday, April 22, 2016

Destination... Prom Chapter 6: Who is Rylee?

When Parker was in middle school we decided it would be a good idea for him to go to the school dances (once I learned about them). Like everything with Parker, it was a process and took a team.

The first dance we made it into the parking lot. He never got out of the van but he successfully got into the van to go to the dance that night which was a huge accomplishment in and of itself. Therefore, we considered this first step a success... even though he never got out of the van.

The 2nd dance that year our goal (as a team) was for Parker to get out of the van and inside of the building.  And... he did!  He went just inside of the building. He never left the entry way. But... he was inside and therefore we considered this 2nd step a success.

The 3rd dance that school year our goal was to get Parker past the entry way. I dropped him off, he met his parapro, he went inside and then.... went into the gym!  He never left the wall of the gym but was inside and therefore this was also a success.

The 4th and final dance that year, as Ms. McSchooler walked Parker out to the van after the dance, she was smiling ear to ear but before she and Parker could get to the van several of Parker's friends beat her to me and said, "PARKER DANCED WITH A GIRL TONIGHT!!!!" I'm not sure who was more excited, his friends, Mrs. McSchooler or Parker... ok, or maybe me.  As it was sinking in, through tears I finally asked, "Who was she?"

There was a dark fuzzy picture (that I cannot find any longer :-/  someone took with their cell phone - I think it was Connie but I can't remember for sure!) of them dancing, my sweet boy and this adorable sweet, dark-haired girl who's name I later learned was Rylee.

Rylee Sehr.

Before that night, I had never heard of Rylee. I had no idea who she was. I knew she was not one of the kids who had been with Parker since kindergarten. I was not aware of any classes they had together but, in all fairness, the middle school is pretty good sized and I only really knew the kids Parker had been close to through grade school which was only 1 of the 3 schools that merged together for the middle school. Being who I am, I started to ask and find out more.

What I learned was basic - she was in the same grade as Parker and everyone had incredibly nice things to say about her.  I knew instantly she was someone we wanted to get to know better.  Parker completely agreed. 

That single dance started a friendship that has lasted over the years, a friendship that makes it simple for me to answer for you the question many have asked me over the past couple months as we prepare for prom "Who is Rylee?"

I'm happy to tell you...

Rylee is...


The friend who is always at every birthday party  - even happy to be fishing, especially knowing that Parker loves to fish!



 The friend who will let you break a water balloon over her head....



 and then get you back with twice as many hahahaha!


And love water balloon fights as much as you do.

She the friend who...


will join you for a movie and not care a bit that you are wearing headphones because it's so loud.



Who will pose with you poolside


and in the car to remind everyone of just how cool you are :-)


She's the friend who will always be there with a hug when you are down (notice the tear running from his eye?) ...


... because sometime's it's hard when life doesn't go the way we want it to and you just need a friend to remind you that you'll be ok.



 She's the friend you can count on to take selfies with you anywhere you go.


And pose for pictures for your mom without complaint :-)


And shares the same awesome friends who all believe in you and are proud to say they are your friend.

She's the kind of friend who will...


stop by to see your new room and remind you that what's important to you is important to her.

She's the kind of friend who will ask you to prom in a way that's unique and special to you, not because of your disability because that isn't who she sees... but because you are her friend and your happiness is important to her too.

So important that she will...


Be there every step of the way as we prepare.  From trying on tuxes to practicing dinner to learning how to pose for pictures to


practicing grand march...

Because she's the kind of friend who believes in you.

That's who Rylee is. She is the first to tell you that she is Parker's friend because of who he is. She doesn't look at him and see a boy with a disability, she sees her friend. She believes in him. His happiness is important to her. It's just who she is.

She has made this journey to prom possible. She's been supportive, encouraging and excited every step of the way. She accepts Parker's challenges and recognizes his disability without it defining who he is. She's able to see past it all to the person he is inside.  The person who can make her laugh. The person who remembers what makes her laugh and uses that on days she needs a smile. He's the person who is always there to stand up for you, the person who only wants to see you happy, the person who is sad when you are sad.  Rylee sees that, every day in Parker.

Is she unique and special? Yes. We all are. Rylee is no exception. She is a unique and beautiful girl - inside and out - who has an incredible heart and supports her friends.

For every Rylee out there, there is another. Really, there is!  If you've followed Parker's journey and school dances you know that for every Rylee there is a Jessie, a Mercedes, a Sierra... there are Drew's and Josh's and Preston's and Jacob's.  There are youth in our communities who are kind-hearted and amazing - everywhere... they are there.  They are making a difference in our world and in the lives of those who need it most.

Rylee is amazing but she's not alone or the only one. I promise you - there is a Rylee where you live. Maybe not as awesome as ours but still, pretty spectacular in their own unique way ;-)

For Parker, Rylee is a life long friend. I have no doubt that they will always be a part of each other's lives in some way. I can't image Rylee growing up, going to college, getting married and starting a family without including Parker in some way. There are some friendships that are so special, that contain such a bond that it's forever strong - even when your lives grow complicated and a bit apart - there is always that person who you know will be there. I believe with all I am, that Parker and Rylee will always have that.

While I am excited to see it (and with his other friends too) I am in no hurry for them to grow up any faster than they already are.  One step, one day at a time.  And our firs step is prom (followed by trying to slow down time!).

After almost 4 months of planning, tomorrow is our big day.   Rylee is ready.  Parker is ready. I am ready. It will be their day / night to shine - their junior prom.  It's going to be an amazing and memorable day and I can't wait!

With Rylee by his side, Parker can accomplish anything and tomorrow will be proof of that.

THAT is who Rylee Sehr is.  She is the amazing friend Parker Roos will be escorting to the Canton High School prom tomorrow, April 23rd, 2016.

Thank you, Rylee, for this amazing journey - for this Destination... prom.  It's been an amazing journey and I can't wait for tomorrow to see the 2 of you walk across that stage.

I know Parker's words are limited but you know what he's thinking and saying just by the look in his eyes or excitement in his voice. In case you have any doubt at all... he says "Thank you." with all that he is, "Thank you for believing in him, for being his friend and for making this wish of his come true."

You've handled the added pressure of our story going viral with the grace and confidence I knew was inside of you all along. Thank you for believing in my son. Thank you for being his friend. Thank you for seeing him for who he is.

Look past my tears tomorrow as I am sure they will flow nonstop.  Know they are tears of a happiness for an experience I wasn't 100% sure my son would have, no matter how important or how many friends he had.  This has, as you know, been months of planning, months of practice and months of learning... for Parker and I. Tomorrow all of that will shine through.  I know he's ready. I know you are ready. I know I am the most incredibly proud mom around (or at least tied with your mom!). Thank you for being you, never let anyone dull the sparkle that is inside of you.  You have so much to give this world - I can't wait to see the difference you will continue to make.





PS - I expect TONS of pictures ;-)  Our love and forever thanks to you.

Thursday, April 21, 2016

Destination ... Prom Chapter 5: Life takes 2 .. and a team

In our home, most life events no matter the size take 2 things: Preparation and Practice.   Our journey to prom has been a constant reminder of both and the importance of a solid team. Even more importantly, it's been a reminder of how amazing the people in our community - and our world - really are.



We've seen the very best in everyone who has been a part of this journey and the list continues to grow.  I may have gotten the ball rolling and continue to direct it's path but it is truly the efforts of many that has gotten us to where we are today and that will be the reason Parker is successful on Saturday at his first prom. 

While the majority of the comments I hear from people are incredibly positive and supportive there are a few that have the impression that this is just "happening". That Parker going to prom is just as "simple" (I use that word "simple" very lightly now as a mom with almost 1 prom under her belt - trust me when I say there is nothing simple about getting your child ready for prom for any parent!  From tux rental/dress shopping to tickets/flowers/hair/pictures all weaved in the incredibly busy schedules of a 16, 17 or 18 year old is not "simple" at all for anyone!) as it is for everyone else attending. The reality is - it isn't. This has been months - literally, months - in the making. This has been a collaboration of school staff (teachers, prom advisors, Parker's para-pro and the principal) along with a lot of planning with Rylee and multiple other friends. A lot, not even as much as I would have liked but... well, life. 

Every plan that is in place now is thanks to a team of people helping to make this happen. The best example I have ever seen of collaboration of school personnel and a family. We started to brainstorm in January, laying out a plan for the next few months. What challenges might we face, what timeline we were working with, who would be involved.  Together - we prepared.



Preparing Parker has been more than just our calendar and talks at home, it's a calendar count-down at school, it's review of what the day will consist of, it's practicing with friends. Practicing everything from how to stand for pictures, how to sit nice at a big meal with food you don't like and have nice dinner conversation in a crowded room, how to walk with someone on your arm, how to turn in your tickets, how to.... you name it - we've covered it, prepared and been practicing it.

Up until now the majority of the preparing has been with Rylee (who has been the most amazing friend and support through all of this imaginable!), Drew, Mrs. Wildebour and myself. The behind the scenes planning with the team (Mrs. Eberle, Mrs. Schoonover, Mrs. Vohland, Mrs. Wildebour, Mrs, Watts, Rylee and myself) has been significantly more detail oriented (ex: there are steep steps at the place prom is held - last year students were stuck on the steps for up to 15 minutes - is there an alternate route Parker can use? Of course! And it's worked out!).

The dance, itself, has never been much of a concern for me. I know Parker will do great, he's been to many dances. It's Grand March that has had me popping Xanax to prevent panic attacks :-) While in my heart, after working with the school, I know this will be fine - it still meant we needed to be very thoughtful of where Parker is in the line-up, who he is by and the ability to practice.

When the line-up was announced, we learned Parker and Rylee will be the 29th in line.  In front of them, Parker's friend Preston with his date. Behind them, Parker's friend Jacob with his date. The next step was to reach out to Preston and Jacob to see if they could practice Grand March with Parker and Rylee. We would need to do this multiple times. Parker needs to learn how to walk with Rylee on his side, where to put his hands, where to walk, when to stop, when to start walking again, what steps to go down and where to exit. Practice to prepare him would need to be repeated multiple times plus after the backdrop is in place and under the spotlights of the auditorium. This would mean practicing either before school, after school or at lunch. After talking with Preston, Jacob, Rylee and Mrs. Vohland we agreed the last 10 minutes of B lunch (which Rylee, Jacob and Preston all have) would be best, it would mean pulling Parker from science but we knew his work could be completed in study hall if need be. With the plan in place - practice started.



It started first with Parker and his (more amazing than words can describe) para-pro, Mrs. Wildebour. They have been practicing 1st hour. She taught Parker the pattern to walk and to put one hand on his tummy (Rylee will hook her arm into this arm) and not to move it - if he moves that hand "Rylee might fall" and we cannot let Rylee fall! The other hand she quickly discovered needed a place too - the place became his pocket.  Putting his hand in his pocket meant not using it to cover his face :-) 

Rylee and Parker practicing - the lights are BRIGHT! 


After Rylee was worked into the practice, Preston and Jacob were added.  Everyone with a "job" to not only provide Parker with peers that he looks up to to model but also to remind him that he's not alone.  And, importantly, to put purpose, a start and finish, behind what he was going to do. Parker's "job" is to follow Preston all the way to the back of the auditorium. Preston's "job" is to show Parker how to walk with his date and remind him that he will be at the end waiting. Jacob's "job" is to remind Parker to watch Preston and that he is right behind him with his date.

The first practices started with Rylee, Parker, Preston and Jacob.  Next they added in a couple of girls for Preston and Jacob to escort, just as they will at prom.  The first big test of how Parker would do in front of a crowd came yesterday as Preston, Rylee, Parker and Jacob took their turn walking the Grand March path in the auditorium in front of the entire (cheering) junior class!  It went off - mostly - without a hitch.  At the first stopping point for Parker and Rylee - everyone cheered which took Parker's hand from his pocket and landed it on top of his head, partially covering his face. His smiling face :-) He loved the attention :-) He also never, not once moved the hand on his tummy - the one that "has to stay right there" so "Rylee does not fall".  He never let go of his friend :-) *It's ok to "Awwww" there - I know I did!  There should not be clapping at the stopping point during the real Grand March so while we are working on reminders to keep his hands in place, it's not a top concern.  Additionally, if he does get nervous and cover his face - Rylee and I are ok with that too :-) We just want to see him successfully make it across the stage and through the auditorium. Just in case there is last minute butterflies for Parker - the ever so awesome Drew will be a few people behind to lend a supportive hand. 



There is a lot to be said for inclusion. We wouldn't be in this position without it. Inclusion doesn't necessarily mean acceptance though. I've spent many, many years going into the schools and talking to Parker's peers about what Fragile X Syndrome is, how it affects him and how they can be his friend - I've helped them understand his disability and put the power in their hands to make a difference.  I've seen many, many teachers promote inclusive activities. I've seen many parents encourage and support their children to ask questions, to learn more and to be friends with students like Parker. It was never one thing. It wasn't just me. It wasn't just "inclusion". It wasn't just the teachers. It wasn't just the parents. It was all of us. It still is all of us. 



We have a choice - as individuals and as parents. We can choose to support, accept and be friends with someone who is differently abled or we can choose to ignore, bully and not identify with them. It's life long. For all of us. 

I can tell you that the pride I have in Rylee, Preston, Jacob and Drew is out of this world incredible. They are amazing, supportive and accepting ... they see Parker for Parker.  They are, simply - his friends. Just like they would for any other friend, they are there to support him.

While it feels to me as though no one could be more proud of each of them - I can tell you first hand their parents (and teachers) pride is exploding :-) They are encouraging, supportive and not afraid to tell anyone how proud they are at what incredible friends their children are with Parker. *THESE are reasons inclusion works. It takes everyone to believe in each other, to be proud and encouraging of these actions and support everyone involved for inclusion to be successful. 

I want to tell you I live in the most amazing community in the world - and, well, I do. But, odds are so do you. It won't happen on it's own.  It takes your involvement and the involvement of those in your school and community - it will take stepping outside of your box often to bring the awareness and provide the opportunities - but the end results are the very best ever. 



For us, for Parker, for his first prom... the end results are coming up on Saturday!!!

We didn't get here alone. It took preparation, practice and an amazing team.  Most importantly, it took friendship.  While Parker still struggles to find the right words, I know how thankful he is for each of his friends who have stepped up to make this experience amazing for him.



And for the long list of friends eagerly waiting for prom to share this experience with their friend, Parker, they will complete this magical night... I can't wait to see the selfies and pictures that come after they arrive at prom!

Until then... one step at a time. One more Grand March practice with friends before our big day!

Jacob, Rylee, Parker, Josie and Preston practicing for Grand March





Wednesday, April 20, 2016

Destination Prom... Chapter 2 The Viral Reality

The fact that "Chapter 2" is coming after other entries that followed "Chapter 1" is exactly why the book so many people want me to finish is not yet complete ;-)

Here we are... prom week and I am backing it up to where it went viral. Yes, a couple of months ago (life has been so busy!).

When I posted the video of Rylee asking Parker to prom, I thought it would be seen by our family and friends and, of course, members of the Fragile X Community. A limited viewing. I was prepared for that.

Within a few hours, the video on my page started to spread like wildfire. I text Rylee asking for her permission for me to change the privacy settings to "public" and watched the "likes" , "comments" and "shares" take off, right along with my anxiety.

Everyone was excited, which warmed my heart. However, the anxiety-filled pre-mutation fragile x carrier mom in me was also on the verge of the first of what became many panic attacks. This... this video being viewed by strangers was of my son. My son who I protect with all that I am. I was letting this very vulnerable moment of his be viewed everywhere not knowing how people would react. I couldn't control if they were nice or if they were not. As exciting as it is, as much as I LOVE to raise awareness, it's scary as hell to put a very private moment of your child out for the world to see knowing how incredibly cruel people could be.

Would the world see the amazing heart and inspiring friendship that Parker and Rylee have? Or would they see a boy who is overwhelmed with difficult to follow speech and start to drop the word that makes me cringe (the r-word) while making fun of him and leave cruel comments?

As the shares started, I followed each one who's privacy setting allowed me to.  I spent that evening in tears - GOOD TEARS - from incredible things said by both people I knew and by those I do not. From members of our local community to the fragile x community to those who are Parker's peers - my heart swelled with the amazing support and love I was witnessing. Here is just a handful of the incredible ones I saw from his peers.





 It was good, it was more than good - it was amazing - my heart was so happy. I was starting to breathe a little easier. Fragile X family and friends from all over the world where sharing the post with incredible words of support and pride.

Rylee's family was pretty proud too :-)





Just as I was starting to breathe again, the most unexpected thing happened. I wasn't even a little prepared for the notification I received early one morning where my friend, Amber, tagged me in a video shared by the incredibly inspiring Facebook Page " Love What Matters " and the flurry of activity that followed.




After a "head's up" to Rylee that the video was going viral I held my breath as the shares and comments started. I read through each one (that privacy settings would allow) - my heart was touched so incredibly. I knew I wanted to save these, for her, for us, for a reminder to every parent who is part of a special journey that there are amazing people out there who not only care but are incredibly touched by the journey we are on.

Believe it or not, this is a narrowed down version of the ones I was able to see:




































































These... these really got to me :-) AWARENESS and reminding families they are not alone on this journey!





Of ALL of those shares - that didn't even include the ones of the amazing FX family, friends and community I am part of.  These are all people I did not know prior to this going viral :-)

It doesn't stop there - if Rylee ever needs a reminder that she's an amazing girl, or Parker needs a reminder that there are people who believe in him or anyone needs a boost... it could be found in the comments - again - there is no way I could share them all but here are some you'll enjoy!






































As of 4/19/16 the video had a total between my orginal post and the Love What Matters Post of: 

813,867 views
4,121 shares
18,324 "likes" 

That's some pretty incredible Fragile X Awareness and inspiring friendship from one kind heartded girl who presented a tie to her friend and asked him to prom - seeing him for who he is and not the disability that challenges him.

That is what life is about. Seeing through the challenges people faced and appreciating the person they are inside. When they are unable to express it, getting to know them without the words to guide you to see their heart and appreciating and accepting them as the amazing individuals that they are.

The world could use more Rylee's... and Parker's <3

We are 3 days away from prom... and more ready than ever.  Thank you for being a part of our journey - stay tuned there is more to come! 



**Parker was born with a genetic disability called Fragile X Syndrome. Fragile X is the leading cause of inherited intellectual disability and the leading known genetic cause of autism. Fragile X has been in our family for at least 6 generations yet we had no idea until Parker was diagnosed in March of 2003. Please take time to learn more about Fragile X Syndrome and all fragile x related disorders at www.fragilex.org