On Christmas day at TCH, we had a knock on our glass wall in the ICU. A mother, father and shy little girl stood there hesitant to bother us. The mother said, “We don’t want to disturb you, but our son saw your son and wanted to give this to him for Christmas.” She held out a little toy truck. She told us that her son’s name is Remington. He’s a teenage cancer patient and had been in that unit for months. They had noticed Blake and thought he was a cute little boy as they had walked the hall earlier, and wanted to give him a toy. We graciously accepted, introduced ourselves and wished them Merry Christmas.
After that encounter, we recalled seeing them walk the hallways. Remington was very frail, had lost his hair and moved very slowly – really only walking with the support of a walker, his parents at each side and a nurse monitoring behind them. After we had gone for a walk down the hall ourselves, we noticed his room was festively decorated with pictures and uplifting get well signs. There was no question he had been under that roof for a while.
On December 31st, NYE day, his parents approached our room again. This time they brought a giant bundle of mylar balloons that were from the Houston Texans football team. Apparently that week several players had come to visit Remington, autographed items and spent some time with him. And their family had finally received some good news the day before… Remington was deemed well enough to move to the step-down unit, out of intensive care and put on a path to go home. Their family thought Blake might enjoy the Texans balloons while still in the ICU.
I spoke to this Mom in the hallway as tears streamed down her face. She couldn’t believe what they had lived through, and were so grateful to see progress in the right direction. While our children had very different illnesses, I related to her struggle, fight and exhaustion on every level.
In those moments I also felt a little judged, and even a bit guilty. I shared her tears, as I connected to everything she was saying – the anguish, helplessness and pain. BUT over my shoulder was my child, who couldn’t have appeared more different than hers. Blake was playing behind me looking happy, healthy, vibrant, smiling – still very much full of life. I spoke my truth to her, but felt it was received poorly. To anyone that didn’t know Blake’s story or condition, they’d never suspect he was as sick as he was. She nodded her head, but looked at me like I had no idea what it was really like to have a child so close to death. I didn’t explain or go into detail about our situation; it didn’t need to be justified. I thanked them and of course wished them the best.
Blake died two days later.
Living in an ICU, fighting for your child’s life is like some bizarre, warped mirror maze. It tests your sanity, and your perception changes with every encounter, experience, twist and turn. I guess in many ways, the same goes for life in general. We all walk through life using the lens of our own experiences, and reality isn’t always as it seems. The truth is you just don’t know what the future holds, for anyone. I don’t anticipate our families will ever cross paths, but I think of them often. I genuinely hope that Remington is home and thriving. I wish I could tell them that the little truck and Texans balloons they gave Blake really did brighten his time there. I also kind of wish they knew Blake’s story, and that we moved out of our unit without our child. Interesting how perspective can shift even in the worst of situations.
I think that’s what I will try to take into each new year. We are all on different paths, some of them more difficult than others. But even when it’s hard, there are still things to be grateful for. Perspective is important.
Before we made our final exit from TCH, we did make sure that those Texans balloons made their way to another child fighting the good fight. And just like Remington, we hope he/she too found their path to recovery.
#forevergrateful #ForBlake #gooddeedsforblake #iloveyousmoochie #NYE