Josh’s story has become my journey. It is a journey that started with the realization that I would become a father. While I knew that would change my life, I never imagined just how much. It all started during our first ultrasound. My wife and I were told something was different with our child. That began our unconventional and uncommon journey into parenthood. We would find out that our son would indeed be anything but typical.
Josh was born on February 4th, 1999. Struggling to breathe at birth, he was rushed to the Neonatal Intensive Care Unit (N.I.C.U.). The first challenge doctors told us he faced was a blockage in his intestines. The surgeon informed us that this was something they had seen before and in fact there were cases where multiple blockages have occurred. Josh would have eight. Medically classified as jejunal atresias, these were fixed within Josh’s first hours of life. As the first couple of days passed, Josh did not recover consciousness and we were told to prepare to remove him from life support. The next day, he would wake up and give us the first sign of his fighting spirit. It was a short-lived victory as we discovered that he would require heart surgery to repair a hole in his heart. Too fragile to move, they actually had to do the surgery right in the N.I.C.U. Against odds, he pulled through that too. A full set of studies would provide other insights into his challenges. A blockage between his right kidney and bladder was discovered (called a UPJ obstruction). Being too dangerous to address in his current state, a tube was inserted into his kidney to allow it to drain until he would be strong enough to have surgery. In the midst of processing all these medical challenges, an MRI revealed that Josh’s brain was undersized and had “smoothing”, what we would later discover as a condition called microlissencephaly or microcephaly with simplified gyral pattern. This would mean Josh’s capabilities would be uncertain but that he would have challenges similar to that of someone with severe cerebral palsy. About a week and a half in, some of Josh’s repaired intestine connections let go and he was back in emergency surgery. It was a whirlwind to say the least. Through the emotional roller coaster of 3 months in the N.I.C.U., we discovered that our son was more than special, he was a miracle.
With our boot camp of being Josh’s parents over, we set out for post N.I.C.U. life spattered with numerous hospital stays, surgeries and most importantly, the lessons of caring for a medically fragile child. As the years progressed, Josh got stronger and healthier. We learned and adjusted to his capabilities. Infant carriers turned to wheelchairs, simple tasks with a baby became the complex tasks caring for a dependent child, and the once intimidating world of medicine became a familiar part of everyday life. Through it all, Josh’s personality and charisma continued to shine. With his medical issues, he wasn’t a happy baby and cried most of the time during those first few years. As we got him stabilized with the right cocktail of medications and care, he grew into an extremely happy kid with a smile that could warm the coldest of days.
Like many, we settled into parenthood, or at least our version of it. As the years passed, we had moments of ups and downs. Our small family of my wife Jess, Josh and I experienced the best life we could. We did it together as a trinity pulled tight like a knot and forged from the experiences we had gone through together.
As Josh headed into teenage years, the upward trend of his physical condition and abilities started to turn. His growing size and numerous traumas started to take a toll on his worn-out body. First, his ability to eat and even control his saliva started to deteriorate. He went from pureed foods by mount and liquid through a g-tube to full g-tube feeds. Constant suctioning to clear secretions became part of the daily routine. More concerning, the amount of time he spent the day alert and awake decreased more and more. His sleep times went from 8-9 hours a day to 12-14 hours. We knew his body was getting tired but we wanted to just keep pressing forward.
His increasing frailty hit us like a train the day after Thanksgiving, 2012. Josh had started with cold a couple days before. He was having horrific coughing fits and while we had hoped it would run its course, it only got worse. Having seen him with pneumonia multiple times before, we knew the signs of a dangerous illness. As we drove to the hospital, Josh started gasping for air at an increasing pace. As quickly as we could, we got him into the ER of our local Children’s Hospital. Just as we got inside the door, my wife went to get him registered and at the same time Josh had one large shrieking cough. I went to suction him as a nurse came over. We both observed simultaneously that he wasn’t breathing. As his color quickly faded, I found myself in the middle of a gang of medical professionals being pushed into the trauma room. With nurses and doctors struggling to get his wheelchair restraints off, I quickly unhooked them to the yells and commands of the team around me. In an instant, I lifted Josh’s 100-pound frame off the chair and got him on the table. As I got pushed from the table, I watched in horror as they went about the work to resuscitate Josh. Shaking uncontrollably and with my wife at my side, this scene was too surreal to fathom. While they were able to stabilize him in the ER, we began an excruciating extended hospital stay watching Josh “crash” far too many times. It’s an experience no parent should see their child endure once, never mind over and over again. Not knowing from one moment to the next if we were going to lose Josh, it was clear our life, our journey, had taken another turn. Once again and against the odds, Josh would survive, and we would return home. A lot would be different though. Josh would require breathing assistance when sleeping and constant supervision. It was the beginning of the period of our time with Josh that my wife and I call “the long goodbye.”
For 4 months, we lived an intense schedule of minimal sleep, constant care and the undeniable realization that we were on borrowed time with Josh. Incredibly, Josh was happier than he had ever been. His spontaneous laughing fits at the cartoons he loved to watch increased exponentially. My wife and I joked that it was from all the oxygen he was getting. It was a gift though. A gift for us to have time we knew would be precious with the way we would want to remember Josh; happy, laughing and smiling.
The end, like all ends, would be bad. Just before April, Josh started with another cold. Another hospital stay ended with a return home and quick return back. Watching Josh on the brink again was gut wrenching. On April 12th, 2013 just a couple months after his fourteenth birthday, his body had enough, and Joshua passed away. The specific circumstances of his death are more than I can cover here in a few words. In the end, we were out of miracles and our time with Josh was done. We did what we could, which was hold him and each other in his last moments. It was what it had been all along, the three of us together and there for each other one last time.
Now a broken trinity, Jess and I began the path of a life that was unknown to us. A life knowing Josh, but not having him with us. It was, and still is a tough journey. I’ve spent a lot of time reflecting. I know that Josh was not a burden but a gift. I know that we were blessed with an incredible child who was a miracle. I know he touched so many people in his short life and we had a front row seat. I live each day with a fragile balance of grief and hope. I recall lost memories and moments of inspiration. I wish we had more time but give thanks for how much we had.
As difficult as a road we’ve had on this journey, it is one I accept and appreciate. It is one that inspires me to discover a path of hope because that’s what Josh taught me.