One of my favorite coffee cups was a Secret Santa gift from the last Girl Scout volunteer meeting I went to. It is dark blue with white and green cursive that says "Live in the Moment." I use it as a morning reminder of what is important that day.
A mantra that stood out to me in the current Tich Nhat Hanh book I've been reading, No Mud, No Lotus: The Art of Transforming Suffering, is:
Waking up this morning I smile.
I have twenty-four hours to live.
I vow to live them deeply and learn to look at the beings around me with the eyes of compassion.
I've tried to commit this to memory and say it to myself in the morning.
I've seen other parents say that they wished they had spent less time grieving their child while they were still alive. I think on some level, it is impossible to not feel anticipatory grief. So instead, I am working on acknowledging those feelings when they come up and then shifting my mindset to something else.
One morning this past week, my youngest slipped into bed as she often does for cuddles. My oldest was at camp and it's was hard to not think that this might be what it's like when she's no longer here and we are just a family of three. I feel so much love for my youngest and yet I couldn't help crying in that moment. I felt it for a bit, and then reminded myself that oldest is not dead. She's at camp, and I'm so happy that she got to go. I will see her tomorrow and get to hear all about the fun she had.
The feelings came up again later that day when I was in the car. I felt sad, and then looked at my youngest in the back, looked at the sky, the grass, tried to feel grateful for the day, and let feelings pass.
The reframing is a mental practice I'm trying. I am also working to shift my focus more generally. If we only notice the suffering, that is what we will feel. This blog allows me to release all of the shit feelings I have and to clear my brain so that I am not consumed by them all the time. But as I've written before, there are a lot of good moments too. And it's important to focus on those.
Yesterday, because it was slated to be 100 degrees for most of the day, I got up early, made coffee, and sat on the front porch. I wanted to enjoy outside before it became oppressive. My oldest joined me with a cup of orange juice and some waffles. We laughed at the mockingbird perched on the top branch of our tree making car alarm noises. It was a nice way to start the day. And despite whatever else I felt that day, it started on a good note.
Mornings like this are also possible because the low dose of steroids has given us back our kid. She is waking up early like she used to. She comes into bed and reads with me. The other day, she brought me her chrome book so I could look at her latest story idea that she wants to turn into a book. She has been doing things and not just laying in bed looking at her iPad. I love that.
I am still afraid of what this new treatment will do to her and what it will take from us. But life exists in the now and not in the future or the past, so for now, I am on my porch with my coffee listening to birds and trying to be thankful for the day.
A Song About Living in the Moment
Lucy Dacus, "Planting Tomatoes"
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