Sometimes there is kindness….
Lately I feel that the world is giving me very few reasons to put much faith in the human race. There are senseless wars being raged across the world. Solvable poverty is a plague more pernicious than any disease. Our politics have devolved into fearmongering and the dehumanization of our perceived enemies. It is hard to see, let alone believe, that our better angels will prevail. And yet…. there are moments when I am reminded of the deep capacity we have for generosity and kindness.
As I write this, I am sitting with my youngest son in his room on the pediatric oncology floor at Lurie Children’s Hospital. To be clear, he does not have cancer. His primary diagnosis/condition is a rare marrow failure syndrome called Diamond Blackfan Anemia (DBA). DBA is a congenital condition wherein the body is unable to produce enough red blood cells. It’s a bit like he is constantly and slowly bleeding, but his body cannot make enough blood to replace what is lost. As a result, he periodically receives blood transfusions. This is a long way of saying, his primary service is hematology and hematology is always attached to oncology. We have spent many days and nights in this hospital and around the oncology unit for his anemia treatment. Indeed, we have spent many days and nights of his five short years at this hospital to manage all of the varied aspects of his medically complex picture. And before anyone is overly concerned, we aren’t even here because of DBA, at least not directly. He is ok, and we’ll be going home soon.
Most of us will never set foot on a pediatric oncology floor. If that is you, then I hope you can reflect on your gratitude. For me though, I am grateful that I have spent time in these halls and rooms. I am grateful that I have been graced with the opportunity to bear witness to the best of humanity.
It is unavoidable to feel the weight of tragedy in a place like this. This is a floor filled with children being treated for diseases that are, at best, entirely life-altering and, at worst, terminal. To see a child ravaged by chemo and radiation is heart-breaking every time. It is a horribly unfair burden to place on one whose life is supposed to be just beginning. At least the child’s burden is lightened by their own innocent ignorance. The parent that holds their child’s hand is not permitted the grace of ignorance. The parents carry the burden of knowledge, depth of fear, and the responsibility of decision. All that, while also knowing that they are powerless in the face of circumstances they can’t control.
The tragedy is the first thing to be seen. But if that is all that you see, then you will miss the opportunity to see a beauty without parallel. In each child is a hope that outpaces objective reality. The strength and courage of a sick child is awe-inspiring. If you are looking, then you can see that child finding joy in all of the everyday things the rest of us take for granted. Each parent wears their courage as an armor to fortify their child’s. There is fear, but also that rare understanding that life has to be lived now. You will see the victims of one of life’s greatest injustices rising above it.
All around you will see healthcare workers that have devoted their lives to serving these children and families. Nurses who show up everyday wearing a smile and bearing a gentle touch. Those nurses who are by their patients’ sides whether the news is good or bad. Nurses who are the first-line recipients of a family’s misdirected anger, grief and frustration, but who show-up anyway and always manage to find a reserve of sympathy and empathy. Physicians burdened with the responsibility of finding the sickness, cause and cure, while knowing that if the outcome is bad their efforts may be rewarded with litigation. Those physicians, nurses and other healthcare workers leave the oncology unit at the end of each shift not knowing if occupied beds will be found empty the next day and yet nevertheless find the courage to return, never knowing whether tragedy or triumph awaits. It is a transcendent courage that asks more from a person that almost any other job.
You will also see generosity. Small, simple acts of generosity that help buttress those children and their families against the darkness. Today, my son, and every other kid in this unit was given a Build-a-Bear. When my boy opened his eyes and saw his Build-a-Bear (a monkey actually) in a Batman costume his eyes lit up, and he squeezed it tight. It was a moment of pure joy for him in the midst of a really shitty night. Moments later the entire floor was treated to boxed lunches from Chick-fil-A. I didn’t need someone to donate a lunch to me. There are probably many parents that also do not need it. There are undoubtedly many parents and families that do need that free lunch. Whatever the circumstance, it is a gift that slices off just a bit of the day’s burden. It is a kindness, that helps a parent, a family member feel truly seen. In 2019, my son and I spent Christmas Eve and Christmas morning in this same hospital. I woke to find a small pile of gifts for my 5-month old son from Santa. My wife went home on Christmas Eve to be with our other boys, but when she left it was with an armful of gifts from the unknown donors to be given to the boys at home. It was a recognition that my son’s complex health is a burden borne not only by my youngest son, my wife and me, but also by his brothers.
Sure, there is probably some corporate marketing strategy that underwrites this generosity. I could choose to view this through the lens of practiced cynicism that colors my view of so much of the world. I won’t do that today though. Because today I feel the kindness of strangers, I feel the impact of generosity. And I know that even a small act of altruism given to an anonymous stranger can have a profound impact. I’ll be honest, Build-a-Bear and Chik-fil-A brought me to tears. Perhaps the 30 straight hours of uninterrupted consciousness played a role in the swell of emotion. However, I am inclined to believe it had more do with feeling that I was seen by strangers for what I am - a parent that loves his children profoundly while living with a constant fear of what the future might hold for his medically-complex child. How often does anyone really feel seen, how often does that feeling come from the generosity of strangers.
Today I a bear witness to the best humanity has to offer and I am humbled.
I wish that it took less than the tragic inspiration of a pediatric oncology unit to remind me of how deeply and unselfishly courageous, kind and generous humans can be.
I have avoided politics with this piece, and I don’t want to mar it with the indignity of American politics. However, if we could all adopt just a bit of the joyful strength of a sick child; the stoic courage of an embattled parent; the selfless perseverance and empathy of a healthcare worker and exercise the altruistic generosity of strangers toward strangers, our world would be a far better place. If we all carried these traits into our homes, workplaces and polling places, perhaps the dignity of the American political system could be restored.
Please forgive any spelling and grammar errors. I haven’t slept in over 30 hours and I don’t feel like proofing!
