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.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisxePwPaZj3-eBoTZHw0D6Zc2aX9eUIa2Y6I8kZRli8plDW0JV_G3-PLOjY0QDNELDPDh-Xe7RcdunUewH5Ot6LXu_Qx5LATwbNDUeJdbBXMeNegM4uSNLaqBqy65V0xXs-6ABFvjgcLx3/s320/IMG_3773.jpg)
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.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2E83TvCk7Vfw9E6SSO0DNlDrTGeDUoAIVStGTwBdmq3PmDZYoI1PRbmzYddfMUt98CkxbuUCRYgRf69JzNl2zBBOFnAzvJwwU0c55s0zPBS7mVGHfFNz7B8Pi_2RO991APeRGgHjHmSho/s320/IMG_3780.jpg)
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.
Visit Beyond the Laces at www.beyondthelaces.com to follow the movement.
To purchase or donate a copy of this book visit. ![](//ir-na.amazon-adsystem.com/e/ir?t=seeowe-20&l=ur2&o=1)
https://www.beyondthelaces.com/
To learn more about our story visit: Owen's Story
https://www.beyondthelaces.com/
To learn more about our story visit: Owen's Story
Thank you for taking the time to share this beautiful article! As a mom who had a child in the NICU, I know how you felt in those early days and I hope to see the same!
ReplyDeleteThank you for your kind words. Inspiring others who have been there and helping those who are currently facing the struggles we've faced as NICU parents is what motivates me to continue to help.
DeleteWonderful account. It's nice to hear again how Beyond the Laces gives healing and hope encouraging our focus to the blessings!
ReplyDeleteThank you for your response. It's an amazing book that has so much relevance in so many different industries.
Deletegreat piece!
ReplyDeleteThank you for the response. It's an amazing book and I hope every athlete reads it to understand the true impact they can have on people.
DeleteWow Amazing
ReplyDelete