We have been blessed with 2.5 weeks of a break. There was a wonderful visit to Nona’s and…a horseback ride! We aren’t entirely sure it was “recommended” since we aren’t even allowed to have a real life Christmas tree but – well the look on Maya and Lincoln’s face was worth all the risks.
I wish today felt a little better. I really just feel tired. It might be because I haven’t slept well in a long time…or it could be because I’m tired of feeling stressed. And worried. I’m tired of seeing my child have to go through some things a child should never have to endure. She makes it so easy when she is her usual Strong and Calm. But we can’t always be strong. No one can. Today’s trip to the bouncy bed was a bit scary for her. She was uncomfortable and sad…it made my heart break. They had to infuse the propofol while she was still sitting up crying and the nurse gently guided her to the pillow as she fell asleep squeezing my hand. My heart hit the floor.
My anxiety subsided after some coffee. Maya woke hungry and in good spirits. She got to pick out some super cool Beads of Courage and watched a movie for the rest of the time needed to “lay flat” after her spinal tap.
Our next chore is to pick up all the new medications and set up the Morrison Refrigerator MAR…
Final day of treatment: April 21, 2018
Save the date: sometime that summer…..there will be a party.
Love is Life