Monday, June 25, 2012

My Hero

A belated Happy Father's Day to all you awesome dad's, but most importantly to my awesome husband. I couldn't imagine facing this world without you.  

A Guest Post by Daddy Bear:

I decided to attend Will's gymnastics class about 3 weeks ago and it was one of the most deeply emotional experiences for me.  I have the benefit of knowing that my son isn't going to be an Olympic athlete so can quietly avoid the group of parents engaged in the passive aggressive circle jerk of asserting that Will has already placed out of college level organic chemistry, throws a baseball farther than the kids 5 years older than him and is, naturally hung like a centaur.  I digress.

Will's gym teacher is a fantastic guy named Mr. Glass.  Mr. Glass goes to great lengths to help Will do the same things the other kids do.  Mr. Glass had the kids start off with a puppy dog walk, which Will seems most adept at relative to the other kids.  The best part was as he got to the end of the mat, he jumped up and ran straight at me with a huge smile, throwing his arms around me and exclaiming "I DID IT!". I hugged him up off the ground and gave him a big kiss on the cheek and also exclaimed "YOU DID IT" and soaked in what was obviously one of the greatest moments in my life. 

It's hard to have these moments and not automatically think that I will never get to see him wear a suit to work or watch his kids do gymnastics.  I swallowed hard determined to stay there and make his day.  He went back to the end of the line and sat down.  I watched one of the other kids go and looked back at the line and Will was staring at me and as soon as we caught eyes, he smiled from ear to ear.

Mr. Glass helped Will do somersaults when the other kids did and hand stands when the other kids did.  It was great and Will was so proud to have me watch it all.  Next up was each of the kids running backwards down the mat.  Will was up and this was obviously going to be very difficult for him.  Will stepped sideways, stumbles and shuffled backwards in an effort that took about 45 seconds whereas the other kids generally finished in 3-5 seconds.  You could see the sheer will in his face and he concentrates and fought the entire way down the mat.  About halfway down the other kids started chanting "Go Will Go, Go Will Go" while clapping their hands.  Mr. Glass was laser focused on Will and was also clapping and chanting. 

The look on Will's face as he fought his way down the mat reminded me of a conversation his doctor had with Lori recently.  She told Lori that she was comfortable with us now and told Lori that on our first visit back in Feb. 2011 - about two months after Will started walking - that after watching him walk  - she thought what he was doing was not walking. 

She doesn't know what it was but she saw a little boy who saw the other kids walking and decided he was going to get up on those legs and do the same thing even as akward and painful as it was for him. 

As Will finished up he ran over to me and exclaimed again that he had done it.  I squeezed him hard enough that it probably should have hurt him, kissed him on the cheek, put him down and quickly excused myself.  I made it to the car quickly and without making eye contact with anyone and shut the car door just in time for the first tear to fall off my cheek.  F'ing brutal.  How could I be such a wimp, sitting in my car crying while my little boy was putting up the fight of his life just to do the simple things other kids dont have to think twice about and he was doing it with a pearly white grin. 

The boy is my absolute hero and I look at him every day and think how incredibly lucky I am to have had that day with him as I consider life on the other side.  I'm going to do whatever it takes to keep my little hero here with us and like I told Lori, if I died pennyless under a bridge but a treatment or cure was discovered that gave Will a long normal life, I would die the happiest person that ever lived.

Will singing Happy Birthday to his Daddy


  1. Neil thank you for sharing. Reading your post made me feel the excitement of a fan in the stands cheering their favorite athlete. The world gets to see the Olympics every few years - you made us all see Will as he lives the life of an Olympian every day. Closing our eyes and listening close, we could almost hear Will's classmates cheering him on. Will is very lucky to have you as his Daddy. Ms. V

  2. Thanks for your post, Neil. Will is an incredible person and I am happy that he has you and Lori as parents.

  3. We are in a different place with our mito-girl, because there is very little she can do on her own. But I can resonate with your pride and grief. We are blessed to have her for as long as God gives us. I have a few mito articles published on Yahoo, if you would like to read more.

  4. I always love the guest posts from Neil. And I agree with the previous poster. I feel like I was there rooting for Will right alongside you. Will is such a great kid and so loving and awesome. You have so much to be proud of. Definetly a hero.

  5. Savannah looked at this pic and said "Will is in time out!" I didn't know what she meant until I looked back at it and saw he was in the corner...