There’s a stretch of road I travel on my way home from work. Sometimes I hit it just right, and as I round one of the final bends to our house, the setting sun seems to rest directly at the end of the road, framed by a towering silhouetted pine tree.
It’s one of those visions of nature’s beauty that elicit a physical response in me. The stress and tension of the day melt away, and my mind resets from the office to the domestic joys awaiting me at home.
Since Tyler died, resetting my mind to home is blighted by the empty nest that we never wanted and never prepared for.
Recently, I rounded the bend at just the right time, and the setting sun, framed by the dark spindly tree, materialized before me. But this time, as the view melted away the stress and tension of my day, my mind reset not to our now empty nest, but to a time when it was full.
Crystal clear in my mind’s eye, I saw a healthy, vibrant Tyler greeting me at home. He unfolded his long, lanky body off the couch, enveloped me in his arms and asked me about my day. As I continued driving, I saw and felt my son as if he had never been gone. Such a beautiful and real vision of him.
The scene in my mind inevitably faded into reality, and the loss of that boy hit me anew. It ushered in the kind of tears that forced me to pull over until the gagging and retching subsided.
As miserable as that crying spell was, I was still gratefully in awe of that glimpse of my beautiful boy.
I rarely experience such visions of Tyler. Especially at this time of year, when the images of him in his PICU bed are more than my soul can handle.
After Ron and I make it through Christmas and the New Year, we have a brief reprieve before reliving the dates leading up to Tyler’s death.
On January 18th, Tyler received his first dose of Busulfan, a preparatory chemo for his bone marrow transplant. Tyler first exhibited symptoms of Busulfan induced Veno-Occlusive Disease (VOD) on February 1st. By February 8th, his lungs joined his other organs already impacted by VOD, and he was moved to the PICU.
The toxins released into his body by failing kidneys gave Tyler cruel hallucinations and confusion. His laboring breaths and excessive thirst made his pleas for water and attempts to communicate unintelligible. On Valentine’s Day, his lungs and kidneys were so bad that he was placed on a ventilator and on dialysis. We didn’t know it then, but we would never again have the chance to speak with our son.
The images of Tyler that play back in an endless loop from early February to late March each year are graphic renderings of his intense suffering prior to being intubated and of what soon became his no longer recognizable comatose body.
So the very brief but graphic rendering I had of him alive and well these three years later as I traveled home was a welcome gift, despite the price I paid afterwards.
Likewise, even though I despise the memories of my child in the PICU and wish I could banish them from my mind, those weeks come with some memories I don’t ever want to forget.
After rounds in Tyler’s oncology ward room on the morning of February 8th, I knew that things were looking grim and that Tyler may need to go to the PICU. I called my sister. By evening, she walked into Tyler’s room. She had packed her bags, driven down from Pennsylvania, and made arrangements to stay with a local friend. My sister was with me when Tyler, frantic with thirst and barely able to breathe, was transported to the PICU at nearly midnight.
And for the next seven weeks, Karen became an almost daily fixture in his room. She often sat with Tyler to give Ron and me much needed breaks from that oppressive place. But she just as often sat next to us in his room, offering her love, wisdom, and her listening ear.
Tyler’s treatment team became as familiar with my sister as they did Ron and me; one attending doctor even affectionately called her Aunt Karen. And Karen watched over not just Tyler, but over me. If not for my sister’s quiet determination, I don’t think I ever would have eaten during those weeks by Tyler’s bedside.
On what turned out to be Tyler’s last night on earth, my sister stayed with me through the night. When we could no longer keep our eyes open, we slept together fitfully on the benches in the family waiting room.
Ron and I couldn’t bear the thought of Tyler being alone in the PICU. Folks from our church signed up to cover nights by Tyler’s bedside so that Ron and I could get away to sleep.
My brother stayed with Tyler every Friday night, making the long drive from Virginia after work to sit with his nephew. I would often hear from the nurse the next morning that John had read to Tyler throughout the night.
We had pictures of our handsome, smiling son posted outside his room so that PICU staff could see their patient as he really was, not as the utterly still and bloated figure with the fixed stare. Because of the photos, staff who met my brother always commented on the resemblance between Tyler and his uncle.
One Friday night my brother and his wife arrived as I was beginning to trim Tyler’s nails. John said he’d take over so I could leave, and forever ingrained in my mind is the image of my brother lovingly grasping my son’s swollen foot, intent on carefully wielding the trimmers.
Tyler’s friend Brandon, 16 at the time, spent time with Tyler in the PICU as well. I cherish my image of him standing by Tyler’s side, holding his friend’s hand – a simple task made difficult by Tyler’s stiff and unbending fingers. Brandon told his mom and me that he and Tyler were “talking.” No words were necessary, because they knew each other’s thoughts.
Another fixture at the PICU was our pastor and friend, Kevin Hardy. Kevin not only loved Tyler as his pastor, but loved the boy who had spent hours at his home, growing up with his own kids. While Karen was there for me, Kevin came frequently to be there for Ron. Like my sister, Kevin attended many of the meetings Ron and I had with Tyler’s doctors.
Kevin was by my side on Tyler’s last morning, when a meeting was called too quickly for Ron to get there from our temporary Baltimore apartment. I would have otherwise faced a team of doctors on my own.
Kevin was there when Ron and I sobbed inconsolably on March 15th, thinking we were saying our final goodbyes to our only son. Kevin’s account of the amazing display of God’s power over death that occurred that night is available here. And Kevin was with us on March 29th, when we did say our final goodbyes to Tyler.
Some of the PICU staff made indelible impressions that continue to comfort me: his respiratory therapist, who knew Tyler before his transplant, and who was always extra caring with him and with us. The two residents who believed with us that God could miraculously heal Tyler again, who held hands and prayed with us, who enabled us to feel hope when many of their colleagues were coming from a harsh, clinical perspective.
And the attending physician who always took the time to sit and explain things to us. Who was present for Tyler’s miracle in mid-March and who helped us understand there was indeed no scientific explanation for what had happened. Who, on Tyler’s final day, headed back to Baltimore despite being en route to her vacation trip to New York. She returned to the PICU and hugged us and cried with us as Tyler slipped from pain into joy.
These faces, these beautiful images and memories from the PICU, the darkest place I’ve ever known, are etched in my mind.
Triggered by a glorious sunset on my drive home, I was given a beautiful glimpse of the Tyler who was once mine to hold. The tears that came afterward were worth it.
Triggered by January, February and March dates on the calendar, I am re-experiencing the very worst memories of my son’s illness. The beautiful glimpses of God, loving a mom and a dad through the people He placed in our path, are part of those memories.
As I traverse through my third difficult winter-into-spring following Tyler’s death, I cling to my wise and wonderful and loving God, who gives “beauty for ashes; joy instead of mourning; praise instead of despair” (Isaiah 61:3). I no longer want to banish all the bad memories, for by doing so, I’ll banish the beauty as well.