Tuesday, July 5, 2016

Being Special




I have witnessed a lot of special in my life. 

As a hockey player, I have been fortunate to skate with Hall of Famers and play on teams with future NHL Stars.  As a coach and recruiter, I can remember sitting in freezing cold rinks watching Connor McDavid and Auston Matthews play when they were 15 years old. 

*For all of my non-hockey friends, Connor McDavid and Auston Matthews were the #1 overall picks in the last two NHL Drafts*

Talk about witnessing special…Watching those two made the frostbite on my toes worth the price of admission!

But when I think of special – my first thoughts are not of Hall of Famers and rising stars.  I don’t think about world class skill and talent.  I think about my twin brothers, Max and Jake.  THEY are MY heroes.

Now I can imagine that many of you read the title to this blog and thought that I would write about what it takes to become a special athlete. 

Nope. 

I’m sure there are a million other posts that can tell you that.  What I want to write about is so much more.  SO. MUCH. MORE.

Today I want to write about my (amazing) connection with the special needs community, and how my brothers with special needs have made my life more fulfilling and made me a better man.


………….


Max and Jake were born with a genetic disorder called ‘Fragile X Syndrome’.  For men, it is a genetic condition that causes developmental problems like learning disabilities and cognitive impairment.

Through the years, I have seen a lot with Max and Jake.  I have seen the good, the bad, and the ugly.  I have met some INCREDIBLE people who have helped my brothers and my family more than they could ever know.  I have also witnessed some gut-wrenching lows that made me question the goals of humanity.  Anybody involved in the special needs community knows what I’m talking about, on both sides of the spectrum.

Here is an example of one of the gut-wrenching lows: 

It was one of the worst moments of my life, and it happened during a Christmas break home from Cornell.  Max slowly walked into my bedroom, balling his eyes out, and he asked me:

“Topher, what’s wrong with me? Something is wrong with me…”

Over the next few hours, he expressed that he’d been bullied so badly in school that he didn’t want to go back.  He couldn’t understand or comprehend how kids could be so incredibly mean.  Some of the things they said to him…it makes my stomach turn to this day.

I felt helpless.  I felt like there was nothing that I could do in that situation to help him feel any better.  What could I possibly say that could ease that kind of pain? And to SUCH A GREAT KID.

I remember asking myself, ‘Why in God’s name was I given all of these tremendous gifts and talents, yet something as terrible as this can happen to someone that I love – whose genetics came from the same two people that I came from?’

It wasn’t fair.

I would give it all back in a second if I knew that he wouldn’t have to experience that kind of pain ever again.  I wanted so badly to trade places with him.  And I can imagine that there are plenty of other siblings to people with special needs that have felt the same way.

But…

Just as we hurt when they hurt in the tough times, there is no greater feeling than watching them accomplish something and be truly proud of themselves. 

Like when Max graduated from his Arrowsmith Program in Vancouver (Look it up, it’s a fantastic place).  Or when he received A’s and B’s on his report card in his first year of community college.  With the cognitive challenges that he deals with on a daily basis, to me these accomplishments were nothing less than amazing.  

And with Jake, I think of when he was named an Assistant Captain of his JV Hockey team in high school.  Or when he graduated from his PACE Program in Chicago, and many of his classmates went out of their way to tell everyone what a great friend and mentor he had been.

The kid cares so much about the well-being of others, and wants so badly to make other people happy. If you know Jake, and you’ve heard his laugh…you know what I’m talking about.  He inspires me every day.


If the world had more hearts like Max and Jake’s, we wouldn’t be shaking our heads at the news every day.  We would be learning to live our lives with more love, acceptance, and understanding. 


And that’s a gift that all people with special needs possess. They make you feel more deeply.  They make you love more fully.  Through the highs and the lows, they allow you to flat out love and feel more than you ever thought was possible. 

There is a reason why my sister chose to become a Special Education teacher.  I love listening to her talk about the bravery, work ethic, and resiliency of her students.  I love hearing about the positive influence she hopes to make in their lives (and if you have seen her in the classroom, you realize quickly that she has a true gift for doing just that). 

There is a reason why I have chosen to devote a lot of my time to raising money and awareness for the special needs community.  One of the things I used to love doing as a coach was taking our players to a school for individuals with special needs, the Franziska Racker Centers.  They always loved goofing around and playing with the kids, but the conversations after the visit were always very special for me.


The players never mentioned anything about the positive effect they felt they had on the kids.  But they always spoke about the positive effect that the kids had on them. 


Those of us that have been touched by the special needs community know this sentiment so unbelievably well.  But it is heartwarming to see other people begin to appreciate – judgement free – the gifts that lie within these individuals with special needs.

We recognize what a blessing it is to have these brave and courageous people in our lives.  My hope is that one day we can all come to this understanding, and really help these incredible people feel like they belong. 

Because that is what they want.  They want people to accept them for who they are.  They want people to understand what they are going through.  They want to love and be loved. And they want to belong to something they feel is greater than themselves.


Don’t we all?