Saturday, August 27, 2016

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This is how amazing it looks...

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

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

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

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

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

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

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

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

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

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

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

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


  1. Thank you Holly. You and Parker totally inspire me! Kindergarten starts this year and I want to tell my son Conner's class how to be friends with him but honestly every time I try I trip over my own tongue trying. Could you please post on the Facebook page how you have expressed this to kids for all us moms just starting school out? I want my son to soar!

  2. We all love Parker and we love you too. It was nice having you in the stands with us! I love that Caleb has had the opportunity to learn from Parker and you since grade school. You have made him and I both a better person.

  3. We all love Parker and we love you too. It was nice having you in the stands with us! I love that Caleb has had the opportunity to learn from Parker and you since grade school. You have made him and I both a better person.