"Manageable, but preferably never again." -Louie
More tests today, echocardiogram and EKG, and although not enduring, based on his comment we gamely added to the pile of experiences where once is too much. It was stunning to see his heart beating on the monitor, the exact heart I sheltered at one time, listened to and watched with anticipation. Left me breathless, not with sadness, more so with reverence. Chemo in his ommaya port, likely his last for awhile. Spinal fluid still clear of tumor cells.
Louie joined school pals at the 5th grade tailgate. They are so accepting and genuine. I observe him waiver from being included to being on the fringe (he can't always do what they do). I loathe this lack of freedom he has; we're always in sight, watching but trying not to, allowing him this hint of independence and discovery but intruding just as he forgets we're there. I see his eyes look for us. Thumbs up? Good? Good. I wish this lingering behavior was a result of his illness, but in truth, we've always been like that. One child consented us this obsession (and maybe excuse) to enjoy all of it, every minute, to essentially hog him. Honestly, I've always wondered if I love him too much and therefore I'm too consumed with him. In a favorite book of ours the character is nurturing the last lemon tree and after alternatively overdosing it on shade, sun and water he gives it love, so much love that it can't survive all of the attention. Impossible. Right?
Book referenced: The Last Lemon, a Tale of Enlightenment by Lisa Swerling & Ralph Lazar