The weeks of waiting were filled with drama and boredom. Some hours were spent with tightened chests, as we watched and hoped that our son’s breathing would stabilize. At one point he caught another deadly virus and spent a few days dangling over death’s open mouth. The Doctors and nurses worked feverishly to help bring him back from the brink as we stood by, helpless to do anything except hope. The virus was eventually killed off and we went back to hoping that his lungs would open up.
Other times, we would retreat back home to be with our other kids and just try to relax. At least, as best as one could relax, knowing that your tiniest family member was still fighting for their life, miles from our home. I always felt guilty going home. What if he were to die while I was away from his bed? I had to push that thought aside or else I would have simply gone insane. I still had to sleep and I still had to try to provide some sort of semblance for the sake of my other children.
My kids were a real encouragement. They could sense something was wrong and would hug us and kiss us to try to cheer us up. Which it always did. Friends were also the real heroes as we went through our ordeal. So many meals brought over. So many trips to visit us at the hospital. One friend even took it upon herself to host one of my kid’s birthday party. It meant so much, that we could celebrate their birthday and make it special, without the burden of planning an event while frayed by exhaustion.
Super Bowl Reminder
During all of this, my wife and I took a few hours off to go home and watch the Super Bowl on our tiny TV set. We collapsed into the couch with some cheese steaks as we looked forward to the game. Not that we had a real interest in the game, since our Eagles had been knocked out a few weeks before by the Tampa Bay Buccaneers. Oh well, at least it will be a fun escape from reality. And it was, until Joe Jurevicius caught a pass.
As Joe hauled in a catch, the announcers took the time to tell us that Joe’s wife had just had a baby prematurely. And that the baby was struggling to breath with the same condition as my son . The announcers wished Joe and his wife the best of luck and wondered out loud how hard it must be ,to be playing in the game of your life, while your young child is home struggling to live. I’m paraphrasing, but you get the idea.
It hit us like a ton of bricks, every time Joe caught the ball (and he was the leading receiver that night) we had lumps in our throats. I was now cheering for Joe, because he was doing what I was doing. Trying to live life while your heart is being stretched and tortured by something you can’t control. Joe and his Bucs easily beat the NY Giants that night. And we cheered for him, and hoped the best for both of our children.
Day of Reckoning
And then that day came. We received a call from the hospital. I was a little concerned, because over the past week we hadn’t had any calls, because my son had been mostly stable since fighting off his infection.
The nurse on the line said they had an update.
“Yes…” I answered.
“Today your son was removed from breathing support….he’s totally stable and breathing on his own!” the nurse replied.
Did I just hear that right? He’s breathing on his own. He’s alive and going to be ok. My emotions raced as I quickly got off the phone and rushed my wife down to the NICU.
It felt like a victory lap as we made another trip into the city. The sun was shining, we were smiling with anticipation and life all the sudden seemed like an eternal gift. After arriving, we climbed into the elevator and anxiously jumped out as the door opened to the NICU.
As we rounded the corner into my son’s room, we were greeted by a nurse who was getting ready to feed our son. He was wrapped in a blanket and a tiny hat. But the sight was strange, it was the first time in almost a month that he was not hooked up to a machine.
My wife quickly snapped him up and we cuddled him for hours. At one point a nurse asked if we would want to change his diaper. Who knew, that being able to change his diaper would seem like such a privilege! We felt nothing but joy and sheer relief. The waiting was over, my son was going to live!!!!!
Just A Little Bit Longer
Within 24 hours my son was completely stable and was transferred out of the NICU. He was transferred back to the hospital where he was born. He still had another 2 months of drawing down his pain medications so that he did not go into withdrawal. But the constant worry was over, and he continued to grow and recover.
During those months of recovery, we would take our other kids to visit him in the hospital. They were so enthralled by their newest sibling. I’ll never forget the one day a nurse brought him over to the observation window so my kids could wave hello. Their brother gave them a big smile and then fell asleep right before their curious eyes.
My one son asked me why the baby smiled. I told him it was because his baby brother thought he was cool. He then asked me if his baby brother thought he was cool, because he drank Gatorade. We all laughed hilariously. Kids do say the darndest things…
There’s still a little more to this story. But I plan to do that in another post soon. A kind of final thoughts, wrap up. But I do have one more story from this time period.
It was a Sunday morning and I had gone to the local bagel shop to grab some sandwiches and a morning paper. Our son was still in the hospital, but doing well and on the road to coming home. As I flipped through the paper I noticed a story about Joe Jurevicius. The wide receiver from the Super Bowl whose son had been born with same condition as mine. The story reported that Joe’s son had died. His son was one of the 10% that don’t ever come home. I teared up as I read it and wondered why my son had lived and his son had died?
As I read on, the interviewer asked Joe what was the hardest part of losing his tiny son. He replied, that the hardest part was when fans would approach him for an autograph for their children. The fact that others were able to share the Bucs Super Bowl victory with their children was a privilege that he would never know…and it left him numb.
I closed the paper and wiped away my tears. I finished my coffee and prepared to visit my son. My days of numbness had been brief and were ending. But my awareness of the frailty of life and the pain of loss would never leave me.
You don’t stare into the Abyss without it changing you forever.