Tuesday, July 25, 2017

Guardianship and Guilt

Almost every night, I cover up my son, kiss his cheek, tuck in his feet and begin the routine of listening to him yell at me after I closed the door.
7 o’clock” he will say.
7 o’clock” I will reply.
I wake you up first!” he will yell.
Not if I wake you first” I will reply back as I walk up the steps, knowing the odds of that are close to none.
A few more back and forth conversations will happen as he settles in bed. Sometimes it’ll happen quickly, sometimes 5 – 10 minutes or more can pass before I hear it but right before following asleep there will be one more yell for me. Eventually, I will hear it…
I love you
I love you, too” I will reply every night that he’s here for me to tuck in.

Every single time we go through this routine I take a moment to pause and appreciate how lucky I am to still do this. It’s something many parents would love to be able to do, either because their child is too grown up for this now or because their grown-up child is unable to have this conversation or maybe because their child is no longer here. No matter the reason, I appreciate each night I get to tuck him in, each kiss to his cheek, each time he says, “I love you”. It's one of my favorite parts of every day. Not because he's going to sleep but because we have such a fun exchange in this routine, it's always filled with laughs, smiles, teasing and love. It never gets old, it's never less fun. It's our thing and we love it.
This has been a challenging year for me, emotionally, with Parker. It was his senior year. His friends are headed off to college. His life is changing in many ways. I’ve shed more tears in the past 7 months than in my entire life. Some over change but mostly over guilt. And while I can typically keep it mostly tucked away now and then it wins and overcomes me, totally knocking me on my butt.

I’ve come a long way since Parker’s fragile x diagnosis. I’ve come a long way with my guilt of unknowingly passing a mutated gene onto him, forever changing his life. As I’ve often explained to others, grief is a vicious bitch of a cycle. It is. A cycle...vicious, and a bitch. I’ve argued the topic with people who don’t walk in my shoes and with people who have but have moved past it... but for me – and thousands of others – it’s a cycle that may never have an end. 

I can be fine, accepting and totally at peace with myself for not knowing I carried the fragile x gene mutation and passed it along. I didn’t know. It’s that simple. I had no idea. But this past year it’s returned with a vengeance and apparently has no intention on leaving anytime soon, no matter my efforts.

I thought once we moved past graduation, I’d be ok again. I knew I had the guardianship process ahead of me but thanks to my amazing friend Libby who made the guardianship process with her son a fun “we did it” family moment I was sure I had this under control and would be able to keep it positive taking her incredible spirit with us through this part of our journey.

And then, I met with my lawyer and cried through the entire meeting where he was going through the steps, again, since Parker was now 18 despite the fact that I have the nicest lawyer ever. He goes above and beyond to make each step in the process as smooth and pain-free as possible for me and much more importantly, for Parker.

Today, though, was the day it became much more “real” to me. It was the day the guilt returned. It was the day that knocked me on my butt not long after I had finally found my way to stand again.

Today was the day I had my son served with papers. The day with officially stamped and signed papers that say “Your mother says you are not capable of being your own person”. Ok, they don’t say that exactly they say something more along the lines of “he is summoned…. Petition for Guardianship… disabled adult… Holly will be the appointed guardian of your person and estate.” Which is, in my head, the same thing. You mom has declared that you are not able to make decisions and now has to go through this long and expensive process to go to a judge and choke out the words "he isn't capable of caring for himself and making decisions alone." And let me tell you right now, no matter how much I know this is exactly what has to be done and what is best for Parker, that sucks. It sucks to say to people "he can't" because I've fought for 18 years that "he can". But this one, no matter how much I would love it, he simply can't and this is what is best for him. I can't even write about it without feeling like I have to justify it. It sucks. I want to celebrate like Libby (I truly want to be Libby when I grow up, she's just amazing and fun and I adore her!) but I'm not there yet. Maybe by the time I go to court next month I'll be able to channel the Libby inside of me, it's my goal but I refuse to be disappointed in myself if I can't. 

There is not many things that are harder than standing in front of people and saying "My kid can't... ". I know it. You know it. But let's make it fun and mentally exhausting by making you come up with thousands of dollars and crushing your spirit in front of a judge to say "My kid can't...". Seriously. Gut wrenching to me.

Back to today... today we drove to the detective’s office where the nicest lady you could ever meet came outside (because Parker refused to go inside) to serve Parker his papers. He wasn’t going to take them at first but as she kept extending them closer to him while talking sweetly to him until he finally took the papers, tossed them onto my seat and rolled up his window as soon as her arm was no longer in the way. It's the law. The papers had to go from her hands to his. I'm just thankful she was so wonderful and patient because he did not want to take the papers. 

I thanked her, got in the car, put on my sunglasses and pulled away with tears streaming. I don’t often cry in front of Parker, or Allison really, but sometimes no matter how I try to hide it, he always knows.
Crying, mom?
Yeah buddy, it’s ok.”
Call Dan? Make it better? He’s sleeping? Booking comics?
It’s ok, buddy. Mommy is ok.
Just breathe. That’s what Dan tells me. Just breathe.
Yes, buddy. Mommy just needs to breathe. I’m ok. For real. I’m ok.” even those I was not even close to being ok. My heart was shattering with each beat.

As he returned to drumming on my headrest the voice inside my head screamed at me the words I wanted to say to him while I tried to better conceal my sniffles caused by my crying.

The words I want to say to him, that I’ve said before while he’s slept or recovered from a meltdown and words he will likely hear again or I'll say silently to myself.

“I am so sorry. I am so very sorry. I am sorry.” And I am.

I am sorry that I cannot send you off to college and instead will be going to court to have you declared unable to care for yourself. I am sorry that your life has so many struggles. I am sorry that there are things you truly want to do and say and have but cannot. I am sorry that this is the life I gave you. Because no matter what anyone says to me, I did this. This all me. Your disability is a result of my mutated x chromosome. Mine. No one owns this except me. And I could not feel worse or be more sorry. I am so, so, SO very sorry.

I have done everything I could, well, I’m sure not everything – I’m human, I’m sure I could have done more if I had put my mind to it – to be sure he had a great first 18 years. There’s a lot that he missed out on but a lot he was able to experience. Most importantly, friendship. We have had way more laughter than tears. Way more good days than bad. Way more love than you could ever imagine. And that was just the first 18 years. His life is just getting started, we have so much more ahead of us… ahead of him. 

So please, don’t think that every ounce of me is sad. Just one small ounce. The rest of me (and there is a lot of me) is incredibly positive, hopeful, and filled with love. All of the other ounces in me fall there, in the happy, proud, so much love category. 

As much as I get to “own” the amazingly awesome moments in our life, I get to “own” the guilt too. I’ve decided that so please do not put energy into telling me not to 😊 It’s healthier for me to let it cycle and own it than to hide it and tuck it deep inside, which is what I will do. I believe in letting things out and that includes these cycles of guilt.  It’s a process I go through when it pops up and knocks me on my butt. I don’t know how long it will linger but as quickly as it comes, it will leave and that is my silver lining.

But tonight…..Tonight, no matter how much my heart is hurting from the guilt, I will still get to tuck him in bed. I will still remind myself how incredibly fortunate I am to be able to do that (it’s really just as wonderful as it was when he was little! Sorry to rub that in to the mom’s who can no longer tuck their kids in – if it helps, Allison in no way would let me tuck her in!) I will still appreciate our back and forth as I wait for those incredible words… "I love you."

And for a few days while I work through this, after I yell back “I love you, too” inside my head I will also  quietly to myself say “I’m so sorry.

While I'm at it... July is Fragile X Awareness Month. Please take a few minutes to learn more about Fragile X by visiting www.fragilex.org and, if you can, donate to our fundraising page: https://give.fragilex.org/fundraiser/1003868 

Tuesday, June 27, 2017

Discussions with my Daughter... So, the green hair...

Sweet baby girl, if you (or anyone) would have told me that one day my beautiful daughter would want her hair dyed emerald green at 14 I would have laughed and rolled my eyes at you (them). If you would have told me that I would be fully supportive and help keep the color vibrant I would have peed my pants from laughing at the very idea.

That’s, honestly, the difference in what you have in your mind for what life will be and what life actually is. When these moments happen, even when they take you off guard, you view them differently. In all fairness, everyone we know has been saying “I could never let my daughter…” but not a single one of them are in our shoes so it’s impossible to truly say what one would do until the moment arrives.

I’ll admit, the request for emerald green hair took me off guard – well, green with a hint of blue hair but as you showed me images of the cut, style, and color you wanted and we searched together for other examples your excitement was contagious and I was on board. This really takes embracing your inner Slytherin and Ravenclaw to a new level, maybe if I read the books I’d understand more, right? 😉

As excited as you were, it’s one thing to see it in pictures on someone else and another to actually do it and walk around with it but you were set and I was prepared to stand by your side. You’re a lot like me in that way 😊

It took some trial and error to get to the dark emerald green that you had wanted but when we were able to accomplish it you radiated. It was the happiest I had seen you in awhile and I loved it. Your smile took over your entire face and I knew I needed to do my part of being sure I had everything on hand to keep your color vibrant.

We called this shade "highlighter"... it only lasted as long as it took to pick Parker up from practice ;-)

Attempt 1 to darken the blue tips at the bottom and the green

We truly bonded over this time :-)

Meh. Better but not what we were hoping for.

Adding more blue to the green to deepen the shade... 

We may have had some fun with this...

Ok, a lot of fun ;-)

Significantly better but still not perfect...

However, it brought out this amazing simle and look at those blue eyes!

This color stayed for awhile, it was the first I really saw you beaming!

And, I must say, I’ve never seen green hair look so amazing on someone – very much complimenting your skin, your eyes and bringing out your personality. It was really something special to see.
It’s safe to say, “we” were happy.

Never ending smiles... melting my heart!

Others, meh, not so much. Here’s the thing, you weren’t doing this to be rebellious. You were not going to do it without our support. You were doing it for you, to express who you are and your love for something important to you. The rest of the world didn’t need to understand, only you did.
Your grades are great, you are the most amazing little big sister ever, you are very much the perfect daughter. If the only thing you ask for in return is green hair, yeah, I’m fine with that.

Smarty pants :-)
But they were missing it, those who could not see past the color. They were missing the most important part of this amazing emerald green and blue hair… the incredible confidence that came with it.

You held your head high and walked into the middle school for the last week of school. Holy crap kid, this scared me to death. Sending you to school with plain ol’ everyday hair worried me but to send you into the depths of hell (isn’t that what middle school is?) with green hair really frightened me. But you rocked it. Completely and totally rocked it.

Seriously, I wouldn’t be able to leave the house, let alone walk into middle school with green hair but it transformed you, letting you shine. I loved seeing this confidence and yes, pride. Pride in being yourself, in being different, in being unique, in being able to express yourself…I just can’t say enough how amazing that was for me to see or how proud I am of you.

The green brought out this incredible confidence that you keep tucked inside, that you don’t need green hair to let loose but it’s what it took and I was amazed. So, I did my part to keep the color vibrant, awesome conditioner that left your hair with this great mint smell and incredible feel and the weekly treatment – I fell in love with the products and would’ve happily tried any color for you but you only wanted the green and blue so we stayed with that. Most of all, I loved this time we had together, just me and you - talking, bonding and laughing. I love re-color day!

Once again, a bit darker - we loved this shade!

Seriously, this smile each time we'd touch up the color - gah, I love it!

These moments are the best!

I know the green is not the forever color of your hair. I know that in order to get the new cut you want, you had to compromise with your dad on the color and that’s ok because we were given a peak inside of you to something truly beautiful, more gorgeous than the emerald green hair… your confidence. And now that we know it’s there, the color of the hair is secondary because you know it’s there too.

I know the adventures of your hair will continue, through this journey you will find yourself and express yourself in a beautiful way. I hope with each new step your confidence in who you are continues to shine through and grow because you are the most amazing and beautiful soul I have ever met. Your compassion, kindness, intelligence, and humor are as striking as your outward beauty and I love so much that you balance them.

I can’t wait to see where your hair journey goes next but also know, I’ll secretly miss the emerald green.

Also, a huge shout out to Crystal for the amazing cut and getting the color started and to the makers of oVertone, the colors are amazing, the product is outstanding and you truly made this experience much easier! Learn more about oVertone hair color at https://overtone.co/ 

Monday, June 19, 2017

Remember that "amazing" idea I had.... You should try it!

Last fall when I shared the first session of Parker’s senior pictures with some of his friends, I said it was just one part of a secret project I was working on. And it was, as I had this incredible vision for a project that was going to be the most amazing thing, incredibly personal, heartfelt and truly encompassing Parker’s journey through school to this point. The kid was going to walk across the stage at graduation with his class, this was beyond significant and something that was about as surreal as it gets.

Yes, he would be returning in the fall for more schooling but this was such a milestone I wanted to capture what I was seeing each time I closed my eyes and filled with pride at how far he has come.
When I closed my eyes and took a minute to appreciate the moment we were in and what was about to happen I always saw the same thing – every single teacher, parapro, therapist, support staff individual that had worked with Parker over the years beaming with pride.

The truth is (and I hope I have conveyed this clearly over the years) that Parker hasn’t become the amazing person he is just because I’m his mom or because he’s the most awesome son ever. He’s reached this point because of the people around him. And I am thankful for each of them.

Over the years he’s had one amazing teacher after another. One amazing parapro after another. One amazing therapists after another. One amazing support staff after another. All of them, amazing. All of the contributing to help shape him into this amazing young man. Each of them had faced their challenges with him, some pretty significant, but not a single one of them ever gave up on him. No one ever tossed up their hands and said, “Yeah, too much. Not helping this kid” and walked away. And believe me, he gave some of them pretty solid reasons to do just that. Thankfully, they never did.
They fought and worked tirelessly to bring out to shine the incredible soul that is in my son and often overshadowed by his disability. They pushed him to do things that seemed out of reach knowing he had it in him. And possibly the most challenging of all, they sat across the table from me at every IEP meeting. They were on the other end of the emails I sent, the notebook I wrote in, the phones I called. They were there when I was at the school demanding change. There were times we did not agree. Times I didn’t feel there was an understanding of his disability, times I brought in experts from Colorado to help them understand him. Times we had specialists conference call in from California. Times they compromised and times I compromised. Each of us with one person in mind – Parker. Each of them earning my respect and appreciation. We all stood our ground on what we knew was best and learned that working together we could make an individualized to Parker version of that happen.

Parker wasn’t the only one who learned a lot from them, I did as well. And I hope they learned something (positive) from me too. 

I reached out to each of them asking for them to be a part of a picture with Parker in his cap and gown the day before Graduation. I wanted something that showed him surrounded by these amazing individuals who helped him reach this milestone.

I had this vision… my son in his cap and gown, smiling, surrounded by these amazing people. Something like this…

Well, except with all of Parker and well, people we know!
 Or this…

Woo Hoo! We did it!

I even thought we might be able to get individual pictures of him with each  - or at least many – of them and Parker.

As I reached out to them, I thanked them for being a part of his journey, for making a difference in his life. I wanted them to know the important role they played and the appreciation I have.

Up to this point, everything was really perfect. The response was incredible. The photographer was excited. This was going to be the most amazing keepsake, this picture of Parker and about 50 other people. In my mind, Parker was going to LOVE this. He was going to walk in wearing his cap and gown, smiling, proud, happy to see everyone and we were going to capture this amazing moment forever. I mean, really, what else would I think?

As the date got closer, life became more hectic. The reality of the time of year took a hit on the number of people able to attend. There were many graduations and graduation parties that day, family commitments and his kindergarten teacher was in Italy on a vacation with her sisters!

That was ok. I knew that whoever could make it would be perfect. I knew getting everyone was impossible and was happy with knowing that at least 1 person could be there. We planned to take the picture outdoors on the football field bleachers.

Awesome. It was on the calendar and I had started to tell Parker to prepare him. This kid was rocking everything and told me “ok” about the picture so we were on track.

And then the day came. And it rained. No big deal, we had a plan B. We were moving the photoshoot inside. I always have a plan B. This was nothing. We were ready… right up until it was time to go and Parker said, “no way.” You know, that moment when he reminded me that no matter how far he has come, he still has Fragile X. He still has anxiety. He still gets overwhelmed. He still had a lot on his plate for this big weekend.

No big deal, I had a plan B. I called in his friend Remi. They had been together since kindergarten and we told Parker this was a “senior” thing and she was doing pictures too. We picked her up and back on track. Score!

We arrived at the school, Parker did a pretty good job of walking in the door with Remi right up until he saw all of these familiar faces. Faces of people I told him would be there. Friendly, proud, smiling faces all ready and waiting for him.

And that’s when Fragile X took control of the photo shoot.

Parker dropped to the ground. Laying flat, snoring. Not budging.

Danielle took some pictures of those who could attend and then most of them stepped away – retreating to the library with the plan of getting Parker settled and them slowly coming back into the picture behind him.

With some coaxing, Parker budged from the doorway to the spot in front of the steps before laying flat on the ground. I tried everything. Remi tried everything. Mrs. Wildebour tried everything. We even brought his Cubs World Series hat for a picture with Mrs. Wildebour with her Pirates hat. We made good progress there and I thought we were turning a corner. These great pictures were snapped. But as quickly as it happened it stopped again.

Cubs Vs Pirates, these 2 have a bond that will last forever

Feeling defeated I asked Remi what her dad, a family friend, was doing. “Hotdog” (known as Jeff to the rest of the world) had come to Parker’s aid more than once over the years. He was here last year to shave Parker before prom when I couldn’t figure out how to work the razor. He was someone Parker responded well to. It’s hard not to listen to Hotdog. He’s a giant that towers over everyone and has the voice to back it up, not to mention the glare of the eye. He’s not someone you mess with.
More importantly, he’s someone Parker looks up to and responds amazingly to. Not because he can be intimidating but because he’s always willing to get down on Parker’s level. There is a mutual respect between these two friends.

Within minutes Hotdog was there. I truly thought that as soon as he’d tell Parker what to do, Parker would respond. That totally did not happen. Instead, this did.

And this did...

I mean really, this is why Parker loves Hotdog so much. We all do. How do you not love someone willing to lay on the floor in front of a bunch of people with you to help you through a moment?

We were finally able to get Parker’s gown on him but he was not in any way putting the cap on. Totally fine. The Cubs hat worked for me. I’m not that picky. I just wanted the picture. Danielle was able to get some shots of Parker by himself. As we tried to sneak everyone else back in, my guy with superhero senses, bolted, right back to the floor.

Ok, this is do-able...

not easy but doable...  

That smile... gets me every time :-)

And we are fading...

And we are done.

We agreed at that point to stop trying. That Danielle would see what magic she could work to create this picture with the pictures that had been taken.

As everyone started to leave, the final few got Parker hugs, which Danielle also captured.

Mrs. Wildebour, Parker's parapro for his freshman, sophomore and junior years.

Mrs. Volhand, Parker's High School teacher for all 4 years and will be there for him when he returns in August.

Our amazing principal, Mrs. Watts

And of course, Hotdog

The result is a picture which is awesome to me for many reasons. While it only includes a fraction of the people who worked with him it covers every place he attended school, each chapter of his life. Westview, Eastview, Ingersoll Middle School and Canton High School with at least one person from each building. Each part of his journey is represented by someone who is dear to us. Each one of them love him unconditionally and have followed his journey over the years. Each one played an incredibly important part in helping him be the amazing, successful young man that he is.

An incredible representation of the many who helped Parker become the amazing young man he is today. Teachers, parapros, support staff, therapists... truly dedicated and incredible professionals who have worked with Parker every year since he was 3. We've truly come a long way! I truly treasure each person in this picture. 

As crazy as this is going to sound, I love that Parker was added into the photo. Because that is the reality of our life. While my heart was a little sad that this experience wasn’t this smiling kid proudly strutting around in his cap and gown, the truth was that was incredibly unrealistic for Parker. And, I knew so. I just didn’t want to admit it. This is something most people won’t realize but I will know (well and now you since I told you) which truly reflects our life. Everything looks pretty and pulled together from the outside and in some ways it is – it just doesn’t happen easily or naturally due to the challenges in our path. The beautiful picture pieced together is what you see from us each day. It’s the struggles to get each of those pieces that aren’t always seen.

It’s the beautiful pieced together picture that reflects the amazing patience, understanding, compassion, determination and unconditional love that is our life. It is our journey. It is us.

I still think this is an amazing idea. It’s one I hope others give a try, hopefully with a bit more ease. To me, it’s the most humble and from my heart “thank you” I could give to each of these amazing people who became a part of our life, believed in my son and helped shape him into the Parker he is today. And while that young man sometimes is overwhelmed by his disability, he sometimes rocks it too, like when he crossed the stage at graduation the next day representing each of these amazing individuals who took the time with him over the years to reach a point some thought would never happen. Together, we did it. And I will forever be thankful to every single one of them.

I’d love to see someone else give this a try! More importantly, I hope you thank the teachers, therapists, parapros, support staff and everyone who helps and believes in your child. They are, after all, pretty amazing people!

Friday, June 16, 2017

Who heals you?

My guy, his last few days have been rough. I’ve seen it all sinking in since graduation (which I’ll eventually write about) but this past week building up to today have been hard for us both. While Parker walked and "graduated" with his class, he will return to school in the fall to continue in the post-secondary program until he is 21. He understands he is still going to school but not all of his friends will be back. 

Each day this week he has asked me:
Cutie (he’s called Allison this all of her life, despite her requests not to) going to the High School next year?
Paige (Allison’s BFF) going to the high school next year?”
Who’s room they be in?”
What classes are they taking?”
Robbie going to be there? Volhand’s room? DelMastro’s?
Zach going to be there?
Coach Greg needs more people. Who’s going to play? Who’s going to be in buddies?
Drew not be there.
Kylee not be there.”
Remi not be there. Dylan be there?” (Dylan will be a freshman – this one’s confusing him a bit why Remi isn’t staying to help Dylan).
Tori staying?”
No Chris?
What room I go to?
Who my teacher?
What I do now?
Where Rylee be?

To get through these questions (and the endless list of names he asks about) without shedding a tear and sounding happy as I answer while seeing the confusion and uncertainty in his eyes is nothing short of a miracle. 

This is gut wrenching, every single time. It’s yet to get easier for me. He’s perseverating on it. I do my best to answer and to change the topic. The sooner I can redirect him, the less time he will stay stuck on this continuous loop. Some days I’ve rocked this. Others, like today, complete fail.

In the few short weeks since he left school, I’ve seen so much of his confidence slip. So much of his progress slip. And maybe it is not, maybe it is me and my fears. Maybe it hasn’t and it’s my imagination (he tells me this frequently “it’s your imagination”!) and fears as I watch him perseverate on this topic. Or when I go over the months with him “after June?” “After July” “Go back in August” which always circles back to asking where everyone will be.

Parker can’t express everything to me but you can see so much when you look in his eyes or watch the expression on his face... the way his forehead wrinkles up when he’s worried and thinking, the way his eyes are focused or gazing in the distance and the hardest of all, the eyes that are fighting back tears.

It’s been a long day.

I’ve watched this build and have had friends over to see him frequently. Some who will still be in school and some who are going off to college. I think it helps but let’s face it, I’m totally winging this.

Today it built to the point where he just stopped functioning on me. He had a friend over but as soon as we picked his friend up Parker was obsessing. “Where’s Rylee?” “Rylee still sleeping” while texting her repeatedly. He came to a halt when we got back to the house and needed to go inside. He stood at the doorway blocking it with one demand. “Call Rylee.”

So, I did.

And then I almost threw up when I got the message that her phone was disconnected. She’s never been out of contact. My mind immediately raced with the craziest fears (because that’s what my mind does) while telling Parker it’s just because her phone is full that we can’t leave a message and she must be working so she can’t answer…

We came inside and he opened his laptop to my Facebook page and handed it to me. “Call her.” Seriously, this kid, he knows every option. I said, “I will message her, I am not calling her through Facebook.” So I sent a message, putting my biggest fear out there… “Did you get a new #? Parker has been trying to get a hold of you and today it said the number was disconnected. 🙁
He'd love for you to come swim 😊

She had not been online in 9 hours so I was not sure how long it’d be until I had an answer. Parker’s friend and I coaxed him out of the house and into the pool. I filled water balloons and left them as I went back to work.  Every few minutes I’d hear him call me, the first few times I went out “What’s the matter, buddy?” I’d ask as he just stood in the pool water. “Rylee answer yet? Tell her come swim.”

After awhile I stopped going out. I could see them through the window as I worked and his friend was doing a great job of trying to get him involved. But mostly he just stood in the water. Not throwing water balloons. Not splashing around. Not jumping off the ledge. Just standing and looking off into the distance.

Eventually, they came in. “Rylee answer yet?” She had. Her phone was disconnected, unlike my crazy fear that she was changing her number and ditching my boy it was something more true to life and the pains of growing up. I was breathing easier while messaging with her on Facebook with Parker dictating over my shoulder. “Tell her come over. Tell her come swim with me. Tell her no work. That sucks. Work sucks. I'm tired of that damn work. Tell Rylee take a day off .” *Yes, we've become a bit of a potty mouth, I try to remind myself this is "typical" for 18 and pick my battles on when I want to remind him that I don't like those words. Today was not that day.

The boys stayed busy while I went back to work. Ok, not busy, but not asking me to message Rylee every 5 seconds so at least not perseverating. I had told him that Rylee was at work. It had bought me some time but each time I heard his voice or saw him walk by I could see an incredible tension that was building. When I got off of work we took his very understanding friend home, an hour earlier than planned. Parker was crashing on me and I needed as few people around as possible. He kept telling me to call Rylee because he "was scared".

At his friend's house, before backing out of the driveway, I shot a quick message to Rylee saying Parker really wanted me to pass along a message and I'd likely repeat the same message a few more times just to keep him happy. She responded that she could swing by for a few minutes. I let Parker know and couldn’t get him home quick enough.

Still in his swim trunks with his towel around his neck he watched for her from the window. I used the time to wrap up some unfinished ends of work. When she pulled in he was gone, in a flash, out the back door. As I looked out the front window, I could hear her voice in the back yard and Parker splashing in the pool.

He knew she couldn’t stay long and that she couldn’t swim. His body was wound so incredibly tight from holding it together for the past few weeks he was finally letting it out. While Rylee and I shared information on Fragile X to her friend Grace (and heard about Grace’s mom’s work in the disability community) Parker emerged and submerged in the water like a breaching whale...except in adorable human form.

He’d jump up while taking a big breath of air then toss himself to the side, back or stomach crashing down into the water and going under, kicking his feet and swimming to a new spot before immediately doing it again. We watched in amazement as he would briefly appear then disappear again questioning how he could hold his breath so long and not have a nose full of water.

Rylee would occasionally walk over to the sides of the pool, tossing a water balloon, spraying the squirt gun at him or just talking. You could see a smile each time he’d hear her voice while he kept up this wave crashing activity. I knew what he was doing and I was so relieved to see it.

He was self-regulating, taking all of that emotion that he’s kept inside and letting it out through the sensory input he was getting from both the water and the way he would crash his body into it. I could see his previously stiff body relaxing. He wasn’t talking to us but he was listening, very intently each time he came up and would occasionally pause listening to our conversation a bit longer. 

As it came time to go, Rylee walked over and asked him to come to the side of the pool. He went over to her then immediately pushed off the wall and back away. He was almost where he needed his body to be but not quite yet. Rylee patiently talked to him each time he’d come up until he was ready to stop. She promised him she’d be back on Monday and asked him what time was good for him.

As I talked to Grace about the incredible bond between Rylee and Parker she said, “This would be a great picture” and started snapping pictures of Rylee and Parker talking. In complete agreement, I took a few too.

She asked for a hug and right as we thought he was going to hug her, he asked for his towel. He didn’t want to get her wet but he wasn’t getting out yet either. I handed Rylee the towel and she walked back to the side.

After they talked she asked for her hug. When he went to hug her he paused and said, “My arms are wet.” she said, “It’s ok, just hug me.” And he did.


"My arms are wet"

"Just hug me"
It was a Parker and Rylee hug that is truly good for them both. He hugs her super tight and doesn’t let go until he knows they are both ok. I’m not sure if she has realized yet what he’s doing. If you are standing behind her it’s when you can really see it. It starts out as a hug, then as you see his body relax you notice he starts to gently rub her back just a tiny bit. He will either, let go after that or tighten his squeeze. When he tightens his squeeze, I think (but I could be wrong) that he’s trying to help rid her of the negative energy she’s holding onto as well. When he’s ready, almost as if testing, he will rub that small spot on her back – mid shoulder blade. If all is good he was pat her back and let go. As if to say “You are ok again, too.” or "We've got this."

Maybe a little reminder to both that they can tackle whatever is in front of them and be ok.
Or maybe he just likes holding her tight because he’s 18 and she’s a pretty girl… it could be but no one knows Parker like I do. No one is as in-tuned with him as I am. He does the same thing with Dan when Dan is more stressed than usual. It’s an extra-long hug, a little rub on the back then either letting go or hugging more, followed by the little rub and either more hugging or a short pat on the back.

He is a healer. He has an amazing ability to pull the stress and negative energy away, even if just for those moments. What he can’t tell you in words, you feel in his hugs. And it will leave you speechless and for a moment, at complete peace.

This is exactly what Rylee’s presence is to Parker. She is his healer. Just her presence near him puts him in a place to settle his mind, to rid it of the anxiety and emotion that he’s holding it. She doesn’t have to say a word, although he likes to hear her talk, she just has to be there.

After Rylee and Grace left from their short, yet perfectly timed, visit today my son emerged from the pool. He climbed up the ladder and came out of the pool and down the other side a completely changed person. He wasn’t tense. He wasn’t angry. He wasn’t perseverating. He was just calm.
And happy.

He smiled and laughed the rest of the night. Asking for a shower, letting me know what he wanted for dinner and watching the Cubs play until he was too tired to stay awake anymore. The energy in our house had changed. My boy was back.

This is friendship.

This is the power of Rylee. She’s not perfect. She drives her family crazy. She’s looking for her place in this new adult world. And she’s everything Parker needs.

In many ways, I think he is all she needs at times as well. The grounding reminder that life isn’t fair, that it’s unpredictable and fragile and funny. The reminder that someone is always watching, looking up to and respecting you…wanting to be like you.

The reminder that everyone has good in them and can make the most amazing difference just by being who they are. 

And, of course, the power of a hug. 

Who have you hugged today?

Sunday, May 21, 2017

To the Parents of the CHS Class of 2017

Dear Parents of the CHS Class of 2017,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yet part of me remained hesitant and distant.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



Monday, April 24, 2017

Your 2017 Canton High School Prom King....

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Grandpa John, Parker and Rylee

Kristen and Parker

Parker and his incredibly proud sister, Allison

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

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

Photo Credit Dave Lewis Photograph

Photo Credit Dave Lewis Photography

Photo Credit: Crindy Hedges

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

Kristen, Parker and Rylee

Parker and Christian

Parker and Madi

Parker and Jessie

Photo Credit Rylee Sehr
Parker and Lizzy

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

Photo by Dave Lewis Photography

Photo by Dave Lewis Photography

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

Mercedees and Parker

King Parker and Queen Lizzy about to enter prom

Parker and Zach

Parker and Madi Dancing

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

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

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

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

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

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

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

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

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

My prom king

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