After a completely exhausting day I find myself laying here at 10 after midnight wide awake or maybe just to numb to sleep.
Its hard to even remember where we were this morning, or yesterday or last week. So much has happened since then. I no longer know what day it is or how long we’v been here. I don’t know who I told what or how we ended up here. It’s all a blur.
All i know for sure is that waking up this morning with Kai pressed against my chest was a gift. Holding him so close, feeling his breath with my heart, feeling his heart with my sole.
I am so grateful for the nurses and doctors who are doing everything they can to keep him safe and comfortable so I can just lay with him. We went back and forth a few times with the idea of taking Kai home for this last journey but I am honestly grateful we are here. I don’t have to keep track of meds or wonder if I have done the right thing. I don’t have to worry of whats to come. I don’t have to be Kai’s nurse anymore. I am so thankful for that.
And although we are not home, we have been completely surrounded by comfort and love.
Early this morning when it was just Kai and I, I cried quietly into my pillow as I held my little boy like nothing outside that room, that moment, existed at all. I tried to cry quietly so he would not feel my pain but only my warm tears sliding on to his warm face. It was the hardest and most beautiful part of my day.
As the early morning went on it was becoming obvious that a lot had changed overnight. More than I was expecting. He was in a lot more pain and we were not managing it as well as I would have liked. At one point he was so on edge that moving him, holding him, touching him made him wince in pain. Even in his sleep he had a slight whimper and whine with every exhale.
I was not expecting it to get this much worse this fast.
Once his doctors heard that I was afraid to touch him they immediately made a new plan. But as soon as we felt like we got it right, a few hours later we’d be chasing the pain again. By this evening we started him on a morphine drip. He is till getting other meds but this seems to have made things a lot more manageable. He has had times of alert wakefulness where he has not in pain. He have been able to hold him and see his eye again.
We got our new room back in the 9th floor, back with the nurses and staff who has cared for Kai for the past 16 months. We had waves of visitors and messages and the night was filled with love and peace.
After the early morning hours I spent most of the day pretty well composed. I played with Kai, smiled, laughed, kissed him. I shared photos and memories from his life with anyone who came to visit.
We had moments of tears but there was a lot of laughter in this room tonight.
And then when everyone was gone and it was quiet again and Kai was resting peacefully next to me, I read the hundreds of messages you all have been sending and I let myself cry.