10 Years Ago... a Sad Anniversary

This is the story of how God left his unmistakable fingerprints on our lives once again, something he'd been doing a LOT of since the time shortly before the birth of our son, Ryan.

Ten years ago, 12/11/2005 to be exact, I was awakened around 4:00am by the phone call that no parent ever wants to receive. My wife awoke me, calling from the hospital room where she was staying overnight to be with our son, Ryan. She choked out tearfully, "Something has happened with Ryan, and you need to get here NOW." That was about all she was able to gasp out between her sobs.

Our daughters, Ryan's two older sisters, Elizabeth, then age 15, and Christina, age 7, were sound asleep in their beds at our home. In the next ten minutes, I frantically awoke them and got us gathered into the minivan and broke countless speed limit laws as we rushed to the A.I. DuPont hospital in Wilmington, Delaware from our home in Pennsauken, NJ. God kept the police from bothering our frantic speeding race there over the next 40 minutes or so. We arrived at the hospital a bit in front of 5 AM. We ran as fast as we could together towards Ryan's room, where a nurse intercepted us, and directed us down to the Cardiac ICU where Ryan had been recuperating from minor ENT (Ear, Nose & Throat) surgery a few days earlier (had his adenoids removed to help open his airway a little better for when he occasionally fell sick).

I tore off like a rocket, leaving my girls trying to play catch-up following me. I burst into the Cardiac ICU and took the few steps towards Ryan's crib there to see the curtains drawn around his area of the large ICU suite. Through the small remaining opening in the curtains I could see my wife, tears streaming from her eyes continually, sitting in a rocking chair holding the limp form of our four-and-a-half year old son, Ryan. She saw me instantly, and began to rise, still holding him. She approached me just as our daughters caught up to me and came into the room. She held him out for me to take him from her, stepping aside so I could sit in the chair with him. "He's gone." was all she could manage to say.

In that moment, I made sounds I'd never even imagined I could make, I wailed and cried harder than I had ever thought was possible. Ryan, our youngest child and only son, my little boy, was gone. I held his limp form against my chest tightly, rocking back and forth in the chair automatically, not sure who or what that rocking motion was supposed to comfort or ease...in any case, it didn't work. But then, in that moment, nothing could. Barbara was holding our now crying daughters, trying to get emotionally ahold of herself enough to comfort and tend to them as I absorbed the full shock of this most unwelcome and unexpected, devastating news. I kissed his head as I cried and sobbed. He was still warm as if alive to my reassurance-seeking lips; the warmth of him giving my stunned brain some temporary false hope that this awful moment's news was all some sort of horrid mistake.

I soon gathered enough control of myself to ask his CICU nurse, who was still standing by right with us, some of her own tears running down her face at the tableau before her, what had happened. She haltingly explained that she had observed Ryan awaken at around 3:00am or so. He made a bowel movement, and immediately, his heart beat crashed, and the alarms monitoring him all went off at once. Nearly the entire CICU team pounced over him instantly, and for 35 minutes or so did everything they feasibly could, save the ultimate drastic measure of opening his chest and putting him on an ECMO bypass machine, to save him.

Despite their full and all-but-the-most-drastic measures, and all they were able to attempt to do to save him, Ryan's heart would never establish and beat in sinus rhythm again. In a large room filled with all the best specialized cardiac care equipment and medical supplies available, with pediatric cardiac expert doctors who were fully knowledgeable about Ryan's care and condition readily at hand, nothing that even they in all their knowledge and immediate power were able to do in the time needed, could save him. It was as if God had reached out to Ryan and said with finality "no more" and took him home to himself in those first moments of heart failure, making utterly fruitless all the subsequent medical heroics or procedural gymnastics the doctors attempted or employed in their efforts to save him.

This was Ryan's third stay in this Cardiac ICU, the previous two visits having been around four years earlier, the first 11 days after his birth, and the second 10 months later - both for open heart surgeries. He'd survived the two previous open-heart procedures to repair multiple significant holes in his cardiac septum (the wall separating the left- and right- side chambers of his heart). He had barely survived the first of those, surgeries, hemorrhaging badly directly from his heart for around 18 hours following the surgery. He survived only due to the use of a heart/lung bypass "ECMO" machine that day - and then for 5 subsequent and tension-filled days more - together with constant blood infusions to make up for the blood volume losses while his heart still bled from the site of the surgical trauma. Ryan's "toughness" over those first 18 hours, and then the succeeding 5 days on ECMO, so impressed the doctors and nurses that they began to call him their own "little Rocky" as his tenacious hold on to life so impressed these seasoned healthcare professionals who had seen other children succumb to lesser traumas than his - too many times. They'd said at the time that his fight to live through that first surgery and its aftermath reminded them of the fictional Philadelphian Rocky Balboa's tough fighting spirit (in and out of the boxing ring).

In relatively short order, we were able to collect ourselves enough to understand the need to leave the CICU, as there were other sick children there who were doubtless being disturbed by the commotion of our emotional outpouring. I noticed that more than one of the CICU staff people were wiping tears from their eyes - whether in sympathy for our grief, or from frustration at their defeat, we never knew - as we departed.

The nursing staff quickly brought Ryan's body back to us in his assigned room, where Barbara had been sleeping earlier that night and early morning, so that we could mourn in greater privacy than in the CICU. We each took turns holding him, and kissing his head, and weeping together, talking about him and reminiscing with some memories of him while over the next hour or so Barbara and I begin the task of calling our family members, friends, church family, and Ryan's in-home nursing team to tell them of his passing.

I held him one last time, as his head then began to feel cool to my lips, and I could deny to myself no longer the reality and the fully unbearable knowledge that the flame of life had left his small body behind. I asked everyone to give him one last kiss goodbye - as I could no longer bear to hold him as his body cooled...alienating him further from life...from our lives, and after we discussed the necessary arrangements and procedures with the hospital nursing staff, we slowly, numbly, tearfully, departed for home - permanently without our son among us.

Shortly after arriving home that fateful Sunday morning, the members of the team of nurses who had helped is with Ryan's overnight care during his too-brief 4 years of life with us were the first to visit us. They all began arriving not long after we got back to our home ourselves. Soon, about 7 or 8 nurses were gathered around us mourning his passing alongside us. They soon began relating stories of how he and they would interact and even play together some in the middle of the night sometimes if his feeding/changing coincided with him feeling more playful and awake for a while. There was universal agreement among these women who had become such a part of our lives to one degree or another over the past few years - that coming to our home to care for Ryan overnight was what they had considered a "plum assignment", and they so looked forward to it. Ryan was such an easy patient to care for and such a joy to be around when he was awake with them. Many of their other in-home patients were both much more work, and much less able to be interacted with than Ryan, so their work was often much less rewarding-feeling to them than caring for Ryan had nearly always been.

After the cadre of Ryan's in-home nurses had gathered together with us for a while, one of the nurses, Peggy, a seasoned professional RN with 20 years of experience caring for sick children in home settings including ventilator cases and other complex situations, and Ryan's "main" nurse most of the time, said to the other nurses: "I'm just so glad that this didn't happen while I was caring for him overnight, because I would have felt I did something wrong and caused his death somehow." The other nurses murmured in quiet agreement with Peggy's sentiment.

Hearing this, Barbara and I, seated together at the corner of our dining room table near the nurses in the living room, looked up at each other's eyes realizing, we discovered a little later, the same thoughts simultaneously. This, Ryan's cardiac event and sudden passing, had all happened on a Saturday night / Sunday morning. In the 4 years since having Ryan, we had never been able to have in-home nursing coverage for Ryan on a Saturday night. We both realized at the same moment that, had this happened while he was at home with us that night/early-morning, Ryan's only care providers in those crucial early moments after his heart stopped would have been her and I - alone.

Those doubts and fears that Peggy had just shared would have been each of ours to shoulder, had the overnight events happened while Ryan was home with us instead of in the hospital. We each also later recognized that the full emotional weight of those doubts and fears could well have torn at either or both of us badly enough to have become a threat to our marriage and family over time. We had heard enough tales of that sort of problem arising between the parents and families of other sick children. We had several experiences over the last four years interacting and sharing stories with other parents and families with severely ill children during our previous stays at Ronald McDonald houses and other situations while Ryan lived. From those, a too-familiar theme arose that marriages and other relationships too-often failed due to the unexpected emotional stresses during and after children's illnesses and deaths.

But instead of risking the consequences of any of those sorts of problems, God, in his infinite love and wisdom, deemed it best that he take Ryan back unto himself while he was surrounded by a group of some of the highest-qualified professional pediatric cardiac doctors and nurses to be found on this Earth. So, neither Barbara nor I (nor any of his in-home nursing team) could reasonably lay any legitimate claim to the full weight of such an emotional sense of guilt, shame, or blame for causing his passing with our own fears or concerns over our failure to help him properly in the critical moments of need. In doing so, God left one additional soothing, calming, and enduring set of His fingerprints on our lives, and on those whose lives were touched by our beloved little boy, Ryan.

Several days later, a memorial service was held for Ryan at a funeral home near us in Medford, NJ, and we were given fresh evidence of just how much of an impact our little Ryan had on the world in his too-brief time with us. Somewhere near 300 people, many of his doctors, nurses, teachers, therapists, many members of both my and Barbara's extended families driving between 2-3 hours from Pennsylvania to attend and support us, along with our nearby church family, and a significant gathering of people from my employer - all appeared to help us say a final farewell to our son.

Our pastor conducted the memorial service, and he gave me a chance to speak in eulogy for my son. I can't recall nearly everything I said, but among the final points I made was to say to everyone there that they should look around at all the people assembled there at the moment, and grasp the significance of the fact that our little boy had impacted all their lives to greater or lesser degrees in his all-too-brief time on this earth. That, if there was time to tell the full story of his life from events before his birth through to the very end to all those assembled for his memorial service, they too would all see, as his mother and I clearly did, that Ryan's entire lifetime -- from how we were moved largely by events beyond our control from our then home in western PA to southern NJ shortly before his birth (in a hospital that just recently completed an inter-operating agreement with A.I DuPont Hospital for Children in Delaware where Ryan would be directly placed into the skilled and caring hands of the world-famous Dr. Charles Norwood, then one of the top 3 pediatric cardiac surgeons in the world and for whom the Norwood Procedure for repairing hypoplastic heart defects is named, for his cardiac surgeries), through the many serious healthcare events during his life, and even in the timing and manner of his passing - was all a testament to God's love for each of us, one and all.

I'm not sure if I achieved the impact I wanted to with my words at the memorial service right then, but I was trying to make the point that if God can do this sort of impact on nearly 300 other people with the short life of a small 4-year boy, how much more He could do with each of the rest of us, if we'd only let Him. So yes, while we mourn still, today, for the passing of our son now ten years gone from us, we also celebrate the impact that God saw that He made on others with Ryan's brief, but so-special life.