Friday, November 16, 2012

Being Luke.

Luke's school had a fundraiser today called Boosterthon Fun Run.  It is a nice way to raise money for the school, where students collect pledges  and learn about leadership, fitness and making good choices.  The week of activities culminates with a Fun Run - a small track is set up on the school grounds and all students have a goal of completing 35 laps.  Thankfully the track isn't the size of a standard track.

Luke was very excited about the Fun Run.  He had that goal of 35 laps in his mind and he wanted to do it!  I was nervous about the Fun Run.  Luke has a lot of challenges with running and stamina.  I was nervous about whether he would reach his goal, how he would react to other students passing him on the track, if he would hurt himself, if other students would tease him for wearing braces on his feet...  

I showed up to the track bright and early.  I hadn't told Luke I was going - I have never seen him from a distance at school, and I wanted to see how he acted, who he played with... how he was as a student away from the watchful eyes of parents.  The event was set up nicely, with upbeat music playing and several Boosterthon employees giving out directions.  Imagine if dancing around, encouraging fitness to elementary students and showing off your best 'Sprinkler' and 'Running Man' was your job!

All the students and their teachers ("coaches") ran out onto the track through an inflatable tunnel, showing off their decorated team shirts.  Luke was excited to run through the tunnel with his classmates for Team Green Machine, showing off his green Binghamton University sweatshirt with pride.

The Boosterthon employees quickly ran through the logistics of the event, pumping the kids and the parents up.  They really did a great job, and with an excited "on your mark, get set, GO!," the running began.  All the kids together.  En mass.  Imagine watching a soccer game played by 4 years old.  A big clump of kids. 

My kids must recognize me as a mess of hair and a big camera in my face, because amongst all the parents and kids and cheering, Luke called out "MOMMY!" as he rounded the first turn and gave me a big grin.

The goal for each of the students was 35 laps.  Given the size of the track was probably about 1/15th of a mile, that probably doesn't seem like a lot of running.  For the first couple of laps, Luke did a pretty good job of keeping up with his friends.  He was excited to be a part of it all - arms pumping, big grin on his face, and only a hint of a limp.  I hid a little bit in the crowd of parents so that I didn't hover.  My eyes got a little teary - he WAS DOING IT.  What he wanted to be doing... running like a 5 year old.  Happy as can be amongst his buds. 

At the end of each lap, the students passed a line where the teachers - armed with permanent markers - marked off each lap on the back of the kids' shirts.  Numbers 1 through 35 (the Lap Cap).  Luke understood the concept.  He wanted to get to that goal. 

About 8 laps in, Luke's face showed a little bit of distress.  I pulled him off to the side for a minute and tightened his braces.  The second his shoes went back on, he was off like a flash.  He didn't want to lose pace with the rest of his classmates.

By lap 15, Luke had stopped for water once or twice.  He knew he needed a break.  I was proud of him for listening to his body.  But just like with the shoes, the minute he drank the Dixie cup full of water (thank you PTA!), he kicked it back up into high gear. 

As you would expect, the pace of the running amongst all the kids got slower as the laps went on.  I wasn't really keeping track of Luke's lap number.  I just kept looking for that green hoodie while dancing along with the Boosterthon employees to the Jackson Five, Sweet Caroline, and random songs from the 90s.   He was still going.

About the time Luke's face started to look like this:

I started to get concerned.  I didn't want him to hurt.  He didn't look like he was enjoying himself.  I asked him quietly as he ran past if he wanted to stop.  I looked at his shirt, he had done more than 20 laps - that was a great accomplishment. 

"I need to get to 35, Mom.  I don't want to stop." And he was off.

Every now and again, I'd see him stop one of his friends to look at the back of their shirts, to see how many laps they'd done.  Then I saw him stop to talk to his principal, clearly asking her how many laps he had completed.

After I took this shot, Luke took off like a flash, suddenly finding a burst of energy.  He ran past all of his friends, around the outside, making his way through the line of kids waiting for their shirts to be marked before hitting the ground again at high speed. Determination written all over his face.

He had realized that he was behind, and he needed to make up some ground.  But Luke's stamina was waning, and his braced feet were starting to get clunky on the ground.  I didn't know what to do.  I wanted to step in, but he kept on going.  Slowly, then quickly.  Wanting to go and meet that 35 lap goal, but his legs and feet were failing him.  They announced 10 minutes remaining in the Fun Run.  Most kids cheered.  Luke didn't.

At lap 31, he stopped and told one of the Boosterthon employees that he couldn't go any further.  They tried to be encouraging, telling him that he'd done a good job and should be proud.  They announced that there were just 2 minutes remaining.  I could see his lip start to quiver.  Off he went running again, just for a second, though, before he started to limp.

He was trying SO HARD.  Beyond determined.  My heart was breaking.  He was displaying his own.

When he came through the line to get his 31st lap marked, I asked if I could walk with him.  He gladly accepted, and off we walked - hand in hand.  He was pulling on me very hard.  I could tell he hurt.  He did not whimper or complain.  He just kept talking about how sad he was that he wasn't going to get to 35 laps if we didn't hurry up.

As we were nearing the marker line, they announced that time was up.  Luke had completed 32 laps.  I was so proud of him!  I didn't have any expectations for how many he was going to complete, so to get so close to the goal seemed like a win to me.

Luke was devastated.  The Boosterthon employees announced that classes should get into their team lines to start heading back into the school.  Luke started to cry.  Big tears, heavy sobs.  He was so disappointed in himself.  He really wanted to reach the goal.  He felt that he had failed.  I picked him up to try and tell him how well he did and he just cried harder.  He pointed at all of his friends and how they had all reached the 35 lap goal.

I looked around at all of his friends.  Girls, boys, tall, short, black, white, happy, sad.  There were a couple of other kids who didn't finish and they weren't happy either.  I looked back at him.  In a moment I was struck with how far Luke had come and how I wanted to tell him all that he'd accomplished. 

None of those kids was born 3 months early.  None of these kids was resuscitated in an ambulance on the side of an interstate highway.  None of them has had heart surgery.  Or 4 separate shunt surgeries.  None of them had a severe brain hemorrhage at birth or has had weekly physical therapy since 6 months of age.  They don't have faint white prick marks on the backs of their hands from hundreds of IVs.  None of them has annual head and belly x-rays.  None of them has brain damage or cerebral palsy or wears braces to help them walk.  They don't have permanent lung damage from being on oxygen for months. None of them.  Sure some of them probably had one of these things... but none of them has dealt with all of these things, and none of them is still trying SO DAMN HARD to just be another one of the kindergarteners.

But I didn't say any of that. 

I put Luke down.  I asked him if he wanted to finish.  He shook his head emphatically.  His tears stopped flowing, but they still sat on his cheeks.  We started to walk back towards the track. 

I told Luke's teacher that he wanted to finish the Fun Run, and that I was going to walk with him.  She looked at Luke and just shook her head yes.  She knew I wasn't really asking.

We started slowly around the track.  Luke's limp was pronounced.  He didn't complain of pain.  He was just counting 33... 34... 35... over and over.  The classes were still in their lines near the marker line as we neared the end of the 33rd lap. 

Over the microphone came an announcement:

"Everyone, we have just been told that there is a remarkable boy here today.  Luke Slavik is very determined to make his goal.  He has two more laps to go.  Let's all cheer him on."

Luke's teacher had told the announcer what we were doing.  There was a roar that errupted from the lines of kids.  Luke wasn't sure what was going on.

"Buddy," I said, "they're cheering for you." 

He smiled.  BIG.  "Mommy, come on.  Let's run."

I started crying.  So much.  He hurt.  He was tired.  His heart had already shown its truth to me, and here it was, showing me even more.  Where did he learn such determination and tenacity?  I was blown away.  We ran past Luke's pre-K teacher.  She was smiling and crying too.

We ran around the track like it was the first lap.  Fast.  Coordinated.  The cheers made him so happy.  Pushing him on.  We crossed the line marking our 34th lap.   Luke's teacher grabbed his other hand, and the three of us ran around the track together.

The 35th lap was done.  As we crossed the line, there was another eruption of cheers.  Cheers for determination.  Cheers for heart.  Cheers for Luke!  I picked him up and gave him a big hug.  I looked into his eyes.  They were clear and happy.  He was proud.

Despite the smiles and the running, his tears from earlier were still camped out on his cheek.  I caught his teacher's eye and pointed to the back of Luke's shirt.  In front of his whole class, she checked off the last laps.  He had done it.  We cheered again. 

"I did it Mommy!  I made it to the Lap Cap!"

I put Luke down.  The head Boosterthon guy walked over to talk to Luke.  He told Luke how proud he was, and how Luke had demonstrated all of the growth and strength lessons that they had been trying to teach all week.  They gave each other a thumbs up, stopped for a picture, and he thanked us for letting him be a part of such a great story.

All the kids went back into school to have an assembly and give out fundraising prizes.  I went back to the van and just sat there for a minute.  To say I was profoundly affected would be an understatement.  My heart was so full of joy and amazement.  I called Nate and tried to tell him what had happened.  I was a sobbing mess, but he understood both my words and the gravity of what had transpired.

He said "I am so happy that you were there."  So am I.  I don't know if Luke will remember this day for the rest of his life.  I know that I will.  The day that he didn't give up, made up his mind, hit his goal, strived for something that he knew he could do.  Felt pride and joy and inclusion.  The day he showed us all what being Luke is really all about.


Kylie said...

Krystal and I are sharing in your tears reading this story. What an awesome 5 year old, I am blessed with the 3 most amazing nephews on the planet. (I'm biased, but still…)

Kate S. said...

Wow, Amanda. What a strong, amazing boy! You should be so very proud!

Christie said...

Luke has something to teach the rest of us about determination. So proud of him!

Schatzi04 said...

The tears are running down my face. I'm trying to breath between sniffles. Love you all. Proud of you all. And especially LUKE!!! Love, Mom and Oma

Marie Glasheen- Satvatove Institute said...

Thank you for sharing this amazing story of determination. My eyes are still full of tears. I wish all the mom of the world would be that determine to find out who their children really are.

Jason said...

I just read this story to our William and he was cheering for Luke the whole time. You might be getting a call soon from us as he wants to congratulate his amazing friend.

Jemila said...

Kylie has been telling me for years that Luke is her teacher. Now I understand. WOW! Tears were streaming down my face too as I read it, but it wasn't just Luke that inspired me.
What a wonderful Mother!
You were so in tune with what he needed and strong enough to advocate for him! BRAVO!!!

Anna Johansson said...

Beautiful and heart warming story. Luke couldn't have a better and more supportive mother than you. thanks for sharing (I am one of Kylie's friends).

Anonymous said...

Amanda and Nate: I can barely type through the tears... This should be a movie.... What a wonderful mom and dad you both your three beautiful children! knew deep in your soul that Luke needed to finish and you took his hand and made his dream come true! God Bless you all..... you are truly amazing! xoxoxo

Rita Juse-Cirkse said...

Thank you so very much for sharing this touching and inspiring story!
Well done both of you! Way to go!

Jai Maa said...

Good grief, Kylie was right, tears are streaming down my face. I am so moved by Luke...thank you, Amanda, for sharing such a beautiful story of intention and break through. I will think of Luke then next time I feel like a goal is too hard to reach. What a beautiful young leader.

Tim C said...

Amazing and Inspiring! What a beautiful story of determination! Luke's story will touch and heal people's hearts. If Luke gets to read this...Don't ever give up on anything you have a Passion for. You will continue to give hope to all children who have special needs. Thank you for showing how courageous you truly are. You are my little hero!!

Michelle C. said...

This story of genuine love, faith & determination is a humbling reminder of why we are really here...

Bhagavan said...

Thank you. Truly inspirational!

Prema said...

"In a world tilting constantly towards madness it is good to celebrate the victories of love."Thanks for sending this link, Kylie....and happy holidays to you and yours

Kylie said...

Thank you everyone for supporting Luke and his awesome Mommy (and Daddy) by posting and sharing this post :) Love you all!

Forrest said...

Yes.. tears here too. Beautiful story, beautiful mother, beautiful boy! Very inspiring.

Mary said...

A victory lap for Mom as well! Thanks for sharing your story.

Zero said...

That's awesome! What an accomplishment to achieve for Luke. Never giving up is such an important quality to have and it's clear he has it.

Mariah said...

What a beautiful story. Luke has lots to teach me about perseverance(sp)? What a beautiful boy. So nice to know he has such a supportive loving family. I needed a good cry...thanks for the Happy tears

simona said...

you have an amazing beyond amazing family <3 thank you for sharing !

karima gayle said...

We are all blessed when parents take such care in helping their children grow in love. It doesn't hurt to have an AMAZING Aunt like Kylie.

Tanya Schupp said...

Simply Beautiful and Amazing! The New Kids have so much to show us! I understand as I to have a special needs child :-) so maybe I am a little biased.. hehe! Thank you for sharing your message of hope, inspiration, and love. Let the world pay attention and learn by their example of sheer will and determination. You must be one proud Momma!!

Murshida VA said...

This is one of the most beautiful, inspiring, moving, heart-filled stories I have ever read. What a wonderful Mommy you are, what an extraordinary son you have and how blessed your relationship is to be so filled to overflowing with love and understanding.

Susan Shunny said...

I began teaching special needs students in 1987 and nothing except motherhood has meant more to me. It has been an honor to witness on a daily basis the courage, the tenacity, the heart that it takes for some of these children just to get to school and make it through the day. My students have been my greatest teachers on so many levels. Thank you for sharing this and helping to bring awareness to the beauty that is everywhere sometimes in places that we least expect it.

Tricia Sample said...

Thank you Luke and Amanda for sharing this planet with us. You are an awesome team. I loved reading your story.

Kristie Soares said...

What a beautiful boy and a beautiful story. You're blessed to have a child with such strength and wisdom. Thank you for touching me with that story!

Jen Chudacik said...

Again you've produced tears in Bingo :) What a fantastic story!!! One for the books! GO LUKE!

D said...

What an awe-inspiring accomplishment! Go Luke!

Love, Dawn