He snuggled in, chewing the corner of one monkey (sometimes two), sandwiched between his favourite fox and elephant blankets, cozied up in stripped jam jams… It was a relief to see him there in his new bed in his own room even if it was only for a few days this past week. I sleep better knowing he's in the comfort of our home. Too many nights spent away, 627 from the time he was born to be exact (yes, I counted). 627 nights our family was divided, one of us sleeping the night with him, the other in the quiet emptiness of our home. Gawd, I miss being a family and all of what that looks like to those unfamiliar with this life.
We spent the last six months admitted to ACH on isolation. Infection after infection, it was later discovered that Kiah had developed grade 4 GVHD (graft vs host disease) in his gut. By that time it was too late, his colon was beyond repair. Months of complete gut rest, him curled in the fetal position in intense pain, stomach cramping and guttural moaning. It was decided that the only option was an ileostomy, which was performed on August first. We are holding out hope that at some point the surgeon will be able to reconnect his small bowel to his rectum. To say this has been difficult would be a gross understatement. We are heartbroken, another hurdle sweet boy will have to overcome.
As usual he handles it like a champ. He knee slaps in laughter and lightheartedness about the very things that make me weep when his bald head hits the pillow. His ability to let go of what just was in order to fully enjoy what is now astounds and inspires me. I have difficulty everyday making sense of how such an innocent soul could be so profoundly wise. There is knowledge behind those big brown eyes that I am certain I will never fully grasp nor come to understand.
For now I hold out hope that more and more nights will be spent at home, chewed monkeys, stripped jams and all.
my sweet little old boy…
