Going Beyond the Laces

  It’s 8:00 pm in the Neonatal Intensive Care Unit at the Morgan Stanley Children’s Hospital in Upper Manhattan.  Outside the residual rain bands from Tropical Storm Irene are passing through.  Inside visiting hours have just ended. The parade of families begins to make their way to the exit. Some laugh and joke knowing that their new family member will be home soon. Others walk down the hall stunned at what they just saw. They continue to look back wondering if it will be the last time. As each one leaves, the remaining parents can hear that constant click of the locking door.  At the start the clicking goes every few seconds, and then diminishes down to a minute. Once the noise stops, the reality sets in that your support system has gone home, and you are left with the situation at hand, a child clinging to life. Some are micro-preemies; others have a heart defect or some other abnormality that can only be handled in a Level III NICU.  For us, the alphabet spells CDH or
Congenital Diaphragmatic Hernia .

The final click tonight was a Priest, who came by to baptize our child, and also offer him last rights. There is something very surreal about baptism by syringe especially growing up Catholic. Our son was dressed for the occasion his hat was a wash cloth that was used to keep the excess light out of his eyes, keeping him calm while a tube ran down his throat and another into his little nose. His gown was a diaper, adorned with a tiny heart shaped stickers with kittens on them to keep those tubes and wires down.

As a new Dad you can only imagine what this does to your mental state. You can’t ask God to save your child only for the strength to handle what has been set before you, no matter the end result.

So tonight with my wife asleep and my son’s vitals stable, I searched for a way to process all of this. I had a Sports Illustrated Magazine sitting next to my son’s bed. On the cover was Dustin Pedroia of the Boston Red Sox, my favorite baseball player. The title read Heart of the Red Sox. I remember reading Dustin’s book Born to Play, about how no one believed he would make it the “show”. Tonight as I looked at my son, I needed inspiration from something normal in my life, something as normal as a game. A game that before my son’s diagnosis wins and losses meant so much, yet now not so much at all. This was no “show”, no game, but life and death.

I decided to write Dustin a letter explaining my son’s situation, how he was fighting for his life, and although there is no equation where the life of a child = the outcome of a baseball game, I needed the same grit and determination that Dustin displays on the field. I needed my son to fight and not give in to the odds stacked against him. That night when I put my finger in my son’s hand I could feel his fight.

I wasn't sure at the time why I choose to write that letter. I didn’t need a response from Dustin, nor was I upset when I didn't receive one. I thought that writing it was the therapy I needed to make it through the day. It wasn't until later after our 52 day stay in the NICU had ended that reading a children’s book would give me the answers I was searching for.

Fast forward three and half years, my son, despite some minor issues is doing well. He’s going to preschool, laughing and playing and making my wife and I so proud.

We love to read to him and we remembered how much peace we got from walking around the NICU and seeing a famous children’s book painted on the walls. These walls helped us through his first surgery at just 15 days old, focusing on the beautiful colors of the caterpillar as it “eat and eat”  versus the heart stopping moments waiting for his doctors to come tell us his fate.

 When I read Beyond the Laces, I had to look to the heavens, because I barely knew the author yet his story was describing my life and the lives of thousands of other parents who face this battle every day.  The story is about a child who just wanted to be healthy enough to play football like the other kids and not face the medical issues that held him back and parents that would do anything to help him be happy.  I remember after my son’s diagnosis, feeling like that Dad from the story, helpless, and wondering if my son would be okay. Will he always be watching from the sidelines and will his lack of stamina hold him back from playing a game he loves. Reading the words in the story took me back to moments in our journey - like the day we laid our son on the operating table for the third time, trying to keep my composure, while trying to find a way to explain to him that the mask to put him to sleep would make him feel better. Yet the true power in this book is when you get it in your hands, flip through the pages to see your life being illustrated before your eyes.

The boy in Beyond the Laces put his fears and his sickness aside while watching his favorite player, and used the inspiration from his 87 to translate it to real life courage in his battle.  As I know from being involved in this NICU fraternity, not every story has a happy ending, and bereaved parents look to faith, family and friends or may be an athlete to mend their broken heart.  

At the time I couldn’t explain what it would have done for me had Dustin Pedroia responded, nor can I feel angry that my “one in a million” went unanswered.  But after reading Beyond the Laces it helped me understand that having a chance to be “back in the game” is all a parent can ask for. 

Many nights in the NICU,  I would sing to my boy and ask God to “please don’t take my sunshine away”. Today, my “cool, crisp autumn winds”, are filled with plenty of sunshine.   

For the author Bob Salomon, success is measured in frowns turned to smiles, dreams made, and hearts filled with hope. My hope is to return to our children’s hospital one day to celebrate the Beyond the Laces mural on the walls of the NICU and hand out books to all the dads and kids fighting to live to see their 87 make a difference in their lives. 
Visit Beyond the Laces at www.beyondthelaces.com to follow the movement.

To purchase or donate a copy of this book visit. 
https://www.beyondthelaces.com/



To learn more about our story visit: Owen's Story

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