Smiling through our Eyes (Day 6)

She climbed into the wheelchair, and we began our second "walk" around the hospital. Sitting up for 30 minutes is a three-times a day goal, but only moving from the bed to the chair to sit up has been less than enjoyable for scheduled activity. We needed something more and sitting upright in a wheelchair offered a bit more distraction while strengthening the muscles. We needed permission to move beyond the room and about the hospital because of Covid, but we masked up and took our second trek. When we entered the atrium, I noticed Madeline waving. The first time she did it, I thought she wanted our attention (using words is still painful - and remaining silent has also become a coping strategy). Then she did it again and again; she waived at every person she saw. Everyone is in masks, but people eye-smiled. I guess we have learned to see smiles through our eyes during the pandemic. Maybe that is one bright spot of the last few years, we pay closer attention to one another's eyes.

“Your eyes are windows into your body. If you open your eyes wide in wonder and belief, your body fills up with light. If you live squinty-eyed in greed and distrust, your body is a musty cellar. If you pull the blinds on your windows, what a dark life you will have!" Matthew 6, The Message.

People offered bright eyes as Madeline waived to folks throughout the atrium. It was a highlight of today. 

We had several highlights today even as we sat around the room with restless minds. (Not even Jessie, Kickin’ It, or Lab Rats seemed to reduce Madeline's restlessness and wanting to go home). Part of us wonders if the surgery released so much tension and pain in her brain that her mind is able to race and wander as it is not primarily focused on managing pain... Watching her eyes look upward as her mind raced was fascinating. I kept asking, "Is your brain busy?" and she always responded, "Yes." I look forward to talking to neuro about the observation.

Another highlight is her eating. She ate ice cream, oatmeal, and mac-n-cheese today. (No one will miss the hospital food). Her stomach experiences some pain due to the shock of having food for the first time in six days. The feeding tube was a nightmare yesterday, yet it seems to be the turning point in her recovery and healing. 

Our greatest bright spot was seeing Olivia today. Olivia is the OR Child and Family Life Specialist we met on the first morning. Madeline and Olivia had a special bond. (She owned the iPad that played the goat videos). I saw Olivia in the hallway yesterday, and we recognized one another through our eyes. She was surprised to see me; I was grateful to see her (she was sure we had gone home prior to the weekend). I kept in my tears during our conversation but asked if she would be willing to come and see Madeline. This is a tough request as boundaries and territory are well managed in the hospital environment. Nurses and staff do not switch departments because they have a "special bond" with a patient. I get the policy but pastorally I want to yell, "Tear down those walls." Regardless, Olivia came to see Madeline today; I wasn't sure if she would remember Olivia, but she did! Olivia gave us a funny book (the title provoked an out-loud laugh!!!). She asked a few questions but then noticed Madeline was quiet so she simply sat with Madeline in silence and watched a show. I think this was the first time we've had a visitor who didn't enter with a task to complete and was able to just sit with Madeline on her terms. I cannot help but celebrate the exchange of energy between the two of them; and I believe the encounter gave Madeline the social energy to greet everyone this evening. I felt like Madeline was returning to herself as we walked the halls.

We bought an outfit for the way home from Madeline's favorite store. Here's hoping we are beginning our last night at the Children's hospital.

We remain grateful for the village of staff at Greenville Children's Hospital who joined us in this journey. We are grateful for the friends and family who are walking with us with prayer and encouragement. We are grateful for the many meals awaiting one of us on the front porch of our home each night after spending another day at the hospital. We are grateful to the piles of cards and gifts that arrive each day. We are grateful for Micah and Maggie who have managed so well in our absence. We are grateful to Madeline for the courage and perseverance in her suffering. 

We are grateful to God, who has hovered above our room and who has received our sadness, our rage, her pain, and our hope over these many days. The road of healing is not yet over, yet we desire the gratitude and the prayers of God's people to carry us through these next weeks (and months). Prayerfully, we long for our eyes to remain open and bright.

Finally, our prayer list grows in this season:

• For parents who are suffering with their children, especially mindful of those parents who suffer with their children through months and years - you are courageous people;
• For medical communities facing staff shortages and suffering from fatigue (praying for schools, also);
• For those suffering with Covid (and remembering a friend and student who died this week, Matt Warfield);
• For those children who receive Chiari malformation diagnoses;
• For children in hospitals who do not have the presence of loved ones throughout the day...

Lord, in your mercy, hear our prayers.