Monday, April 22, 2013

Why I write

By Mark Brislin-

Going into Owen's 18 month CDH check up I used advice that our nurses gave us when we were still in the NICU.

"Focus on the baby, not the monitors", they would say when they would see my heart stop and face drop every time one of the alarms went off.

So here we were on the eve of his appointment, trying to stay optimistic but also understanding that over the past few years, most of the conversations with doctors started positive and ended with a "But..."

"Focus on the baby..." -I watched my son as he played in our living room. I was trying to evaluate him. If my eyes were only X-ray capable I'd know exactly what was going on in his little body. He was breathing effortlessly- always a good sign for a CDH kid. Under his shirt I could see the first signs of a belly. No longer did he look like one of those poor kids from the feed the children commercials. He picked up his new basketball walked over to his new two foot rim, (sorry, he's not old enough to understand how to dribble), he placed the ball over his head, and gently placed the ball through the hoop. He turned around, looked at his Mom and I and said, "two points." Not bad for a little guy who was on life support 18 months ago, I thought to myself. As you can imagine I was pretty optimistic. He could walk, talk, hold a ball up, and have the presence of mind to put it through a hoop and the verbal skills to say, "two points." The baby was telling me that for once we could put our concerns aside and be optimistic about the results.
The next morning I was still in a pretty good mood. Going into Manhattan is always a little stressful, since you can never anticipate how the traffic will be. Some days the 15 minute ride could take two hours, other days you can just sail right in. On this day, luck was on our side. The ride in was uneventful.
So let me jump ahead for a minute. The day continued to be one we would never forget. Owen's doctors told us all good news. They were happy with his progress, and told us to, "treat him like a normal kid." We couldn't have been any happier and for the first time in Owen's short life, the doctor said see you in 6 months. For a NICU family to not have a doctor's appointment scheduled for 6 months is like hitting the lottery.
But the story of this day, doesn't end here. What's missing is the reason why I began blogging for Papas of Preemies. It's the reason why I am so obsessed with giving back to other Dad's that will or have walked in my shoes.
When you come out of the elevator on the second floor of the Morgan Stanley Children's Hospital you face a pretty industrial looking gray wall. Just around the bend is the doctor's office and the general waiting room where the other CDH kids wait to be seen. It's not uncommon to see another CDH family that we've connected with on Facebook, people that we barely know much about other than their journeys though CDH at MSCHONY. So I didn't really anticipate what I saw when I arrived at the waiting area. There was a ilittle boy in a stroller, with his Mom and Dad at his side. This wasn't just any little boy, but Owen's pod mate on the night he was born.

I still remember coming into the NICU for the first time on that night, standing at Owen's bedside and seeing this burly guy covered in tattoos across the pod. I was so scared and so tired that I couldn't even lift my head up or move my cheeks to smile at him. A few minutes had gone by, the nurses had just come and briefed us on Owen's condition, he was doing well, "but." Then I felt a tap on my shoulder. The guy across the pod was now standing next to me. He told me his son's name, he explained their story, CDH, just like Owen. He said to me that they would be there for a long time as well, and that somehow, we would all get through this together. He took a little toy from his son's pod and placed it on Owen's and said that it was their good luck charm throughout the rough times, and that he hoped it brought us just as much luck as it had brought them. I had never met this person. From what I could tell we were from different worlds. When you live in this area, your accents can be traced back to you by the borough, county or neighborhood you grew up in. I had guessed from his accent that he was from either the Bronx or Brooklyn.

I was blown away by what he did for me that night and during our reunion I made it clear to him that I would never forget it. We took pictures of the two boys together, and reminisced about where we were. We renewed our promise to meet in Central Park some day soon to teach our boys how to play baseball together. It was an amazing day all around, and one that I will never forget.

We are all busy in our day to day lives, taking care of our kids, and trying to stay employed in this crazy world we live in. I try to find time at night to write as many blogs as I can, tweet as many times as I can to try to reach as many dads as I can. Because you just don't know the impact words on a page, or a tap on the back can have on someone who is going through the toughest time in their life. It's the reason why I write, and the reason I will never stop.


  1. Beautiful Mark. What an amazing and incredible story. What a great papa you are

  2. Hello Mark,
    I've read your postings and remember your wife from the parent group that Peter (nurse) and I (psychologist) would facilitate weekly. Your postings are special and have inspired us to have regularly devote a group time to just "dads" (as the dad group that you went to no longer exists).
    I couldn't be happier that there was no "but" in this visit to the doctor.
    All my best,