Around here, even though fall is still days away, the end of summer comes when Jon returns to school. This year, I am yearning for a schedule that this transition can bring while being gentle with myself as I realize that having a growing, inquisitive one year old means that a schedule will be hard to uncover most days. And I deeply get that this is part of what being a mama to a one year old is all about. At the same time, I remind myself that our day to day is a bit different from most people I know as her three times a day medication and other needs still rule our world over here.
This time last year, almost every day I would take Ellie Jane outside for just a few minutes and show her the birds in the trees and the lavender and the maples leaves falling to the ground, and we would watch Millie run around the yard. We were singing "Beauty in the World" out loud at least ten times every day, and my own deeper understanding of the need to seek beauty and joy in the midst of all that life hands you began. I was standing tall inside hope and bravery and fear as we were counting down the days until her open-heart surgery. I remember saying variations of this to her over and over: Your only job is to live. Just be right here and breathe deep and eat and keep being you because there is so much for you to do and see and know. The world is waiting for you.
And today, as I watch her run around the yard finding leaves and little flowers and rocks, I believe that she heard me. I believe that she heard me when she was on the ventilator and I told her that when she wakes up and her heart is healed, she will be able to live big in the world.
Part of my current practice is letting go of wanting to know what the day will bring. I take a breath and try to notice what I need while being aware of what Ellie Jane seems to need in a given moment. Until this summer, we were encouraged not to take her many places to avoid the possibility of her getting sick. And now that Jon is back to school, I am finding that I need to reprogram my mind in a way with a new understanding of what my days alone with Ellie can look like. Meaning, for months, the only outings she and I would take were to the cardiologist's and pediatrician's offices. I didn't take her to the store or the park or for walks along Puget Sound because we just worried so much about her getting sick. My heart hurts a bit thinking about all that we did not do and all that she has been through (that we have been through).
Last week, as she napped, I was feeling overwhelmed. I sat there on the couch and closed my eyes and found my breath. Inhale. Exhale. Repeat. Feel the space the breath creates. As I took a few moments to just be still, I reminded myself of all that I already know. I reminded myself that we walked through this time last year and the weeks that followed, so oh my goodness get out of the house girl and walk through these days too. These days that are full of laughter and joyful games and exploring all that awaits. These days that are full of so much more than I even thought they could be. These days that push me to beyond tired and remind me of what is real. These days that I want to look back on and say: We found our way. We napped. We explored. We danced. We laughed. We cried. We made it. We lived big.
So we are starting here: We are walking to the neighborhood coffee shop that is so much closer to home than I realized. Here Ellie Jane can have a strawberry smoothie with whipped cream yes please, and on this walk, she can say hi to people we pass and the birds she sees and the squirrels who run across our path. And I can take my camera to capture the small moments that are just outside our door, so that I will always remember how I chose to find beauty again and again and again.