For I did not yet know how to fight for my daughter and surrender her simultaneously.

I have so many memories of this journey I want to recall, and since it is fall, which I love, I will be here and remember those autumns where I had no opportunity to sit and reflect.

There were nightly dinners at the Ronald McDonald House. Groups of volunteers would come in during the late afternoon to begin preparing a meal for the families that were staying there. Many times these volunteers were families who lived at the RMH in the past and wanted to give back, or students from the university, or sometimes even groups of medical residents from the children’s hospital. The RMH kitchen was a communal area with six or so separate meal prep areas. Every four or five rooms in the house had an assigned fridge, sink, and cubby to store personal food items in. The kitchen had recently been redone with beautiful dark granite countertops, new appliances, a large communal pantry brimming with donated grab-and-go foodstuffs, and a generous central island for serving, sitting, commiserating.

Speaking of commiserating, many RMH parents coped with their pain through baking. There were always fresh baked goods out on the countertop to share: lovely, gooey cinnamon rolls, cookies, brownies, nut bars- you name it. Those sweet treats were always staring at me, tempting me to stuff my face before the evening meal was served. We usually tried to make it back to the house for supper, which was served during the ICU nursing staff shift change. Since we knew all of EK’s nurses well, supper was a time to go off duty and attach ourselves to something normal, nourishing, nurturing. I always looked forward to that time. But there were some days when life in the ICU was too unstable to detach from her, even for an hour. Luckily, someone in the house had the generosity and foresight to leave out stacks of various sized to-go containers so you could come “home” in the evenings, pack yourself a steaming hot homemade supper, and take it back with you to the hospital.

Every family had a chore they had to do each day in the house. They were simple things like vacuum the common area, wipe out the microwave, clean the table tops- and when you were done with your chore, you would go to the office door where there was a clipboard attached, and leave your initials by your room number to indicate your chore was done. Usually I would wake up, pump, get coffee and a quick breakfast, and do my chore if it was a quick one. Sometimes, when there was a shitshow going on at the hospital, I would skip my chore and have to confess to the House moms (the admins) in the morning with a sob story. They always understood.

The hospital lactation consultants gave nursing moms these Medella plastic bags, much like the ones grapes come in from the grocery store, that could be used to sanitize breastmilk pump accessories. There was one afternoon, in the fall after Emma-Kate’s second open heart surgery, where standing at my assigned kitchen sink, I began filling the sanitizing bag absentmindedly to the water mark on the outside of the bag. I was looking absentmindedly out the window above the sink when a bird swiftly shot out of a bush, capturing my attention. I beheld the dazzling wonder of the golden late summer hues, just before the leaves began to turn. In the backdrop, a sleepy, mossy graveyard gazed back at me from the steep forested slope of a not-too-distant hill. Taken aback, I studied the anatomy of the view. How could such an outlook be so accessible here? Where every. single. parent was ailing with the disease and brokenness of their fragile children? With the daily laden layers of dying? My heart anguished.

But then, an unexpected calmness lulled me from my ledge. The outrage and injury seeped right out.

Perhaps, this was here to remind me of the peace of death.

To keep the reality of what was reasonable in my everyday perspective. I had already learned I could not put my mind on the autopilot mode of doing anything possible to keep my daughter alive. There must always be a humane, intelligent consideration of what was reasonable to do to maintain quality of life for her, and years later, I realize, for us as parents too.

Perhaps this perspective was here to remind me that the fear of losing her would never leave me.

This perspective was here to coax me into Fear Not.

To know that life and death are intricately intertwined everyday of our lives, whether we choose to allow that reality into our consciousness or not.

It was there to teach me to welcome that presence.

God, I prayed, hold me close today.

For I did not yet know how to fight for my daughter and surrender her simultaneously.

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