2021: The year of tiny big moments
I’ve spent a lot of time the past eight months thinking about the time we had with Cypress in the hospital during his cancer treatments. We had big moments of hope when he was able to breathe on his own without a breathing tube and when we received the test results that said he was in remission. But those moments were balanced with massive moments of devastation when his leukemia relapsed or when his chemotherapy wasn’t working the way we hoped it would have. Big moments that crash into you like a tsunami. We’ve all been trained to look for big moments. In a way, we only look for them. But the big moments aren’t where I spend my time. I think a lot about the tiny moments.
I keep circling back to those moments that, if you were to write a biography of someone, would often never make it past the firstdraft. Moments that we tend to forget, to move on from, leaving them in the past where we experienced them. A neatly trimmed sticker. A hand to hold. A name. A dance. Moments so tiny that if you blinked, you’d miss them. But the tiny moments are how you survive and what helps carry the weight of grief once the wave has crashed. Our strength and our hope were built in practically immeasurable increments.
Cypress had to use a feeding tube during a lot of his treatments and had to have a large sticker on his cheek holding it in place. Extra adhesive on his delicate skin was always something we tried to avoid even if it was by the milimeter. When Cypress first got his feeding tube, our nurse spent a lot of time cutting out the bee sticker she used to hold his tube securely to his cheek. She closely traced the black outline of the yellow bee’s face with her scissors to make sure there wasn’t any extra adhesive on it. The carefully cut out sticker wasn’t about how it looked (though it did look a lot nicer than when it wasn’t cut out). The sticker meant that someone took the time to care about how a tiny patch of his skin felt.
On Christmas in 2019, we were in the Pediatric Intensive Care Unit (PICU) a few weeks after Cypress’ bone marrow transplant. Our oldest son hadn’t been able to visit due to flu season restrictions for transplant patients. The staff made an exception for Christmas and allowed one 30-minute visit but our 3- year- old would have to wear a mask and isolation gown. (I bet a lot of you now know what it’s like to have a 3 year- old in a mask. We didn’t back then.) Now imagine having to also have them in an isolation gown. I know, I can almost see you cringing. Our PICU RN did something extraordinary. She quickly cut an isolation gown in half lengthwise, found a kid sized mask and the smallest pair of gloves in the unit. She then spent a few minutes fully focused on our 3- year- old helping him get dressed “just like a real nurse.” His mask, gown and gloves stayed on for the entire visit. He left the room with a giant smile on his face because he felt seen. Cared for. Listened to. He still loves medical play in large part because of the few minutes our nurse spent with him making him feel like he belonged at the hospital.
I’ve thought a lot about how people talked to Cypress (if they did at all). Did they take a moment to talk to him? Ask him how his day was? Seeing Cypress as an individual mattered. An unexpected place where we found that support was on morning rounds in the PICU. Rounds are when your entire medical team talks together outside of your room discussing lab results, treatments and the plan for the day. It is often incredibly clinical and can be scary to listen to as a parent. Every morning the group started with a resident saying, “This is Cypress Miller, our little one post bone marrow transplant [x] days. He’s having difficulties with his breathing and kidneys.” I didn’t realize at the time that’s not how most residents introduce patients during rounds (though it should be). One morning our resident switched to a different department and we had a new resident introducing our baby to the group. And that’s when I heard what was written exactly on their patient list: “Cypress Miller. 9 months. Multi-organ failure.” What a difference it made to hear Cypress spoken about in a way that highlighted him as a baby not a patient.
And I’m reminded of one time in particular when Cypress was intubated (and heavily sedated) where the same kind and empathetic resident from rounds came in to examine him. While he was looking at his hands, Cypress reached out and grabbed one of his fingers. This kind resident stood there for at least 10 minutes holding his hand, sitting in the chaos and flurry of people coming into our room. We stood and smiled at each other.
The kind sedation nurse who Cypress loved and trusted so much that he’d reach out for him while he was being sedated for radiation therapy. The supportive pharmacist who sat with us and said, “you’re doing a good job.” The remarkable oncologist who always asked Cypress how he was when she walked into his room. The wonderful PICU attending who asked, “how can I help?” The joyful room service helper who would dance to cheer Cypress up when he felt unwell from his treatments.
I remember these tiny moments because they changed our time in the hospital. They reminded us that kindness exists in the world. Between the waves of big moments you can hardly have time to come up for air. A note. A hug. A phone call. A song. Tiny moments end up being the small life rafts you cling to, pulling yourself up to breathe and feel like you can make it through the storm. When your child has a medical diagnosis that could end their life, life itself feels cruel and unfair. Because life is. But life can be sweet, joyful and happy. Tiny moments of kindness, joy and normalcy help tip the scales. They bring hope.
It feels like we could all use more tiny moments of kindness, love and support in our lives. Small seeds of validation that you’re seen for who you are in this moment, in this year, in this pandemic. Everyday reminders to each other that we’re here. We see you. We support you. How can we help? I want us all to find tiny ways to support each other and toss small life rafts to our community when we see a big wave coming or the devastation after it’s crashed. Ask a friend how their morning is going. Tell someone you’re thinking of them. Thank someone for their help. If 2021 has to be known for something let it be known as the year of tiny big moments.
