It was a quiet day yesterday. He slept mostly. They still can’t control his nausea. He still communicating with eyes closed and nods murmurs. He did give his best friend fist bump and his middle finger. It’s little things like that that reassure us.
It’s hard when the day before it seemed come out in a flood of communication. It gave us hope for the miracle. And while this still is a miracle of course it has put us back to that place of not knowing.
I wrote this yesterday last night on Twitter:
Small things. A fist bump, a murmur, an understanding of where he is and why. It’s still so unknown but he said “I love you”: that is joy.
You want the time machine. The miracle. The one in a million fluke. You have no idea at the beginning; not now nor when they were born.
You have the illusion of knowing what their life might hold. A hope. An assumption of what they’ll do or be. I’m forced into mindfulness
Hardcore. This moment is all that matters. We are on a path now and it’s unknown to us with hidden trail markers, talus fields, cliffs.
At 22 my friend and I got lost in the San Juan mountains. Dusk falling. Ill-prepared. Backtracking over trails we hoped were the main ones
I remember him ahead of me, his hands clasped at the back of his head. The silent body language of mounting panic. And I remember the light. His parents flashlight bouncing with the cadence of someone’s steps as they began the long hike back to us. Not lost but walking blind.
Something will knock me off my track. My brother after visiting came home and said… Well this is the perfect time because you guys were doing that house remodel and he’s going to have problems with stairs. All of a sudden my mind scrambled furiously… He’s going to have problems with stairs.
A few days ago we were standing in the bathroom and Z looked up at me uncharacteristically quiet and serious. She looked deep into my eyes and asked me if he was going to die. So smart this little one. I said absolutely not. He was like sleeping beauty. He’s getting phenomenal care. It’s just going to be a little while before he can do some things he used to –maybe Christmas I said. Christmas she said its like a bazillion days away.
She visited the hospital yesterday. She held her father’s hand. I saw them framed by the long hallway that has the view of the capital as you’re suspended over a city street. She, her father, and uncle Michael tossed the pink teddy bear between them like a football game.
And then G and I brought her into his room. He sleeping now. There’s no breathing tube, just monitors and IV’s he looks very peaceful. He moved a little. She noted that. She clung to her father very quietly.
Someone, I don’t remember who, said that she understands that there is something big going on here. She wants to be part of it. But this is our life now so she needs to understand to be able to come to the hospital with me.
I had reassured G in our nightly texts that she is okay. She’s holding up. She feels secure and happy if a little confused.
I watched her father hold her next to W’s bed and quietly explained to her each thing that she saw. I looked at the posters plastered all over the wall of his life before this. I looked to his mother who was looking at me, grasping my hand barely holding back tears. She’s okay she said this is okay she said they take our cues from us. And I took a deep breath.