Just like many people, there are things in my life that before I did or experienced them, they were on my never ever list. Some things turned out to be unexpectedly great – like becoming a hospice nurse. Before actually working as one, my belief was that this was something that was morose and miserable. How can you stare death in the face everyday and still feel like you are helping those that turn to you for that help? But, as anyone in hospice knows, it’s not like that at all.
Hospice defies definitions and shatters preconceived notions. When I am admitting a new patient, I am not just worrying about medications and equipment, but, reading the unspoken conversation, clues are given as to how important the non tangibles are. What is that patient not saying? Do they bristle at certain questions? What is the family dynamic? These things are, arguably more important than any traditional nurse assistance that can be given.
Recently, a pediatric hospice case found its way into my census. On a late Friday afternoon, after a long week, my email beeped and the notification alerted me that a peds patient would be in need of our services. My heart sank… it felt like someone was pouring cold water down my back… I literally felt every hair on my body stand up. Fear, panic and apprehension flooded my mind. I am not a pediatric nurse. Never have been. Even as a hospital based nurse, I avoided pediatrics like the plague.
But, this was a whole different ball game.. not only was the patient 13, but, he was dying. As a mom, my mind raced to his mom. How was this possible? The thought of this mother, wracked with grief and swimming in pools of sadness, brought instant tears to my eyes. Losing a child, doesn’t that violate the rules of nature? A spouse who loses their spouse is called a widow. A child that loses their parent is called an orphan. There is no word to describe a parent who has lost a child because it exceeds the limits of the mind.
“Don’t panic, Helen, because we know you are nervous,” the office folk said, “he is really sick and not expected to make the weekend.” That whole weekend, even though I was not working, I would check my phone to see if the dreaded message came across. Realizing I was caught in a no win situation, if he passed that weekend, while sad, I wouldn’t have to see him, but, if he made it, I would begin caring for him. The message never came across and with a huge lump in my throat, my shaking hand pushed the doorbell. Drawing a sharp breath in, the door swung open and my education began.
A sweet woman, his mom, opened the door and warmly greeted me. Now, I have been in just about every nursing situation you can think of, but, my comfort zone had been left in my car. She was so sweet and kind, inviting me into her home. We sat down to talk for a bit before going in to meet her son. His medical road had been long and bursting with difficulties, but, she had always been there for him. I also learned that even though he was so heartbreakingly disabled, they lived a full life- vacations, theme parks and lots of family fun. “He has lived a life fuller than most children his age and I know his time is growing to a close. But, I am ok with the passing. You can’t hold on to every gift forever.” As she was saying this, I felt myself biting the inside of my cheek in order to stop myself from crying. My mind was blown.
When I went in to see him, his disabilities were evident as the room whizzed and beeped with the various machines used to help him. Unable to move, I reached over and softly held his little hand. His eyes, as blue as the Caribbean Sea, moved over towards me. Those little eyes looked into my soul and all of that fear and apprehension I felt melted away. I was there to help him, but, it was he that was helping me.
My little friend and I had several more visits. Sure, I did typical nurse things, but, I also read him Harry Potter and listened to his mom’s stories. He did eventually pass, and as luck would have it, our hospice’s pediatric nurse was on call. That part I had still not resolved in my heart and mind. But, the universe took care of that and all was just as it should have been.
I am a firm believer in fate and destiny. That little boy was brought into my life to teach me things I would have never learned any other way. His mom, who is now on my list of personal heroes, opened my eyes to strength I could have never imagined possible. While I was so crippled with fear initially, by the end, my heart is so grateful for this opportunity. Doing pediatric hospice is not something I would want to do again, this experience has branded itself on my being.
Never say never because life will say right now.