The Second Hardest Goodbye

The final scans had been presented in the Care Conference Room, the one that all parents of children who are medically complex loathe. You know, the one with the stiff chairs and the large conference table. And with the seemingly always empty tissue box strategically placed in front of the mother, the box still showing the battle damage of the mother who had come before you.

I thought the hardest parts of the hardest admission were behind us. We had made the choices, we heard the options, we signed the papers. The ones that said this was it, no more treatment. We acknowledged that this fungal infection would be the thing that killed our son.

We were not strangers at this point to this Care Conference Room or the impossible decisions made in it. We had already been enrolled in hospice for eight months at this point. But this was the finale. This was the time where we said stop. This was the point where we asked to take our son home, never to return to this place, our home away from home.

I shuffled down the hallway in the fog of what my heart had known for days. My son was dying. I took as deep a breath as I could muster and retreated to his hospital bed. At this point I wanted to run; I didn’t want to wait for the discharge to be planned, or the ambulance transport. I didn’t want to wait for the meds that would take a day to arrive by courier. I wanted to rush out the door with my frail little boy. I wanted him to feel the sun, to snuggle his puppy, play his Legos, and just be home.

But the next 24 hours proved to hold so much for my heart and healing. The seeds of Kellan’s legacy. I’m glad I didn’t run.

The Prince of P5

I barely slept that night as I chatted the night away with the night nurses, the ones who had decorated his hospital room when he finally left the PICU. The ones that fought so hard to get him back to his home on P5, for one last time. Because they felt my urgency, and Kellan’s, too. The Prince of P5 had reigned over this unit for more than five years. It was only fitting that his journey ended here.

The night was long and heavy, knowing I would never again sleep on a couch bed next to Kellan. I felt the immense weight of this day rising as I started to hear the typical bustle outside our door. Having been through the gauntlet the day before, the nurses had helped me decide that no one was allowed to enter our room until they had checked in with the charge nurse first.

What I didn’t know was that word was spreading through the hospital that Kellan was going home. The charge nurse became a de facto bouncer, asking each person who wanted to enter what the purpose of the visit was. The morning was filled with a steady stream of those who had encountered Kellan at some point during his life and many hospitalizations.

It seemed like just as one person would come to lend support and say good-bye, another person was waiting outside the door. Doctors, NPs, volunteers, hospital administration staff all waiting to see my boy. This stretched on for hours, filling my heart, and further showing me the mighty impact my 6.5-year-old boy had on this world and this hospital.

Before I knew it, the morning had turned to afternoon, and the floor nurses were flooding in now, just a few minutes before our scheduled ambulance transfer. What I know for certain is that the high level of love, empathy, and compassion that nurses possess is endless and too rarely seen. That late July day they helped dress, prep, and love my boy one last time before we left. If love and care were enough to save him, surely those moments would have healed him completely.

Kellan’s Legacy

As we finished up, the laughter and joy turned to tears and a somberness fell in the room. Then another knock at the door, an unexpected one; 10 residents crept in. Some knelt, one stroked his foot, another held his hand. For the next 10 minutes, these doctors shared Kellan stories. We laughed about how frazzled he could make a new intern. We joked about his early morning Netflix TV choices. Discussed the sweet dinosaur names he had given them, and talked about how even on his worst days when the pain wouldn’t cease, he would still smile and great everyone with a, “Hi, Friend.” Stories I had almost forgotten were told with a cheerful “remember when” or “I’ll never forget.”

And finally the most precious words: “I want you to know that Kellan taught me…” I hold each one of those stories so close to heart. Knowing that Kellan made a difference, and is still making a difference. He is in the hearts of those who cared for him.

That day, the third most difficult day of my life, held my second hardest goodbye. But even as we left brokenhearted, to face the uncertainty and pain of watching Kellan die, I couldn’t help but feel joy. This place was responsible for so many miracles. So much life that Kellan wasn’t promised. That day of saying goodbye brought the unexpected blessing of knowing his tiny life would be remembered by all those who cared for him. His bright yellow spirit would always linger in the halls of P5.

Following the death of her son who was medically complex, Vanessa has dedicated her life to furthering his legacy and speaking the wonders and truths of pediatric palliative care and pediatric hospice. She spends her free time searching for Kellan signs, hiking, taking photographs, shuttling her daughter to and from play practices, snuggling her puppies, and going on adventures with her soldier hubby.