Nathan is still in Oklahoma City with Kyrie:
It’s not a fun hotel stay; she is at the hospital, which is definitely more fun with Papa than on your own.
In the meantime, I have the night off work so that I could be home with the other children, and we came home to find this giant present on our porch:
The children tell me we have been getting presents every night, and Papa is hiding them as a surprise for Mama on Christmas. How fun is that?! Someone must be doing the 12 Days of Christmas! That’s so sweet!
Less sweet was my attitude about desperately needing to do Mary’s hair tonight, which usually I love doing. I want to, and it’s good bonding time for us, but I am so tired! To make up for my murmuring, I did it extra fancy, with a new twist my friend Jennifer taught me. It was my first time to try this one, and Mary wouldn’t let me do it as tight as it needed to be, but we got some twists in and left the rest as ringlets. She loved it, and thought I was doing the girl from Secret Garden.
She also uses my “cancer cap” as her “black girl hat”, which makes her very grown up as she learns more and more to care for her own hair appropriately.
Kyrie was also getting a hat tonight! She is have her 9th sleep study (in 20 months).
You see in this video that she was very happy with her “hat”, but only until the oxygen and carbon dioxide monitors interfered with her sucker eating!
She is a sick little girl this week, with what we thought was pink eye turning out to be respiratory infection, and our RSV shots sent to the wrong place so still not here for home health nurse to give her, and trach assessment testing this week with meeting on Friday for new ENT we like with the palliative care team. We have some hard decisions to make over Christmas.
Is the spring coming?” he said. “What is it like?”…
“It is the sun shining on the rain and the rain falling on the sunshine…
Frances Hodgson Burnett, The Secret Garden
That’s our life, just waiting for Spring.