Heart of Beckett

UPDATE (3/17/13)

An “old friend” of ours visited us a few days ago…but unfortunately decided to hang out with us the past few days. Though we always appreciate his presence at first, we don’t like how we feel when he outlasts his welcome. His name is Mr. Morphine, and though he has helped my son through some difficult times, we know it’s best to tell him goodbye and leave us alone for a while.

Beckett has required multiple “rescue doses” of morphine the past few days. We are being told that when they turned off Beckett’s fentanyl, they probably should have weaned it a little less aggressively and adjusted his methadone as well. So we’ve had to play a little bit of catch up the past few days to help him out. It’s exhausting. Leah has been bent over his bed for what seems like days. And unfortunately for me, it seems like every time I REenter his room from my “Lobby Office”, Leah has to look up at me and say something along the lines of “he just started doing this…I promise” (in reference to his hysterical crying). It breaks my heart. So, Leah and I both will tag-team him for about an hour to console him…typically with no luck. Soooo….cue Mr. Morphine. It’s surprisingly discouraging (even though we’ve experienced much worse days than this). But it is what it is, and we just enjoy another day and another moment with him.

It’s really feeling like steps forward and leaps backwards lately. We are tired. We are cranky (…sometimes). Overwhelmed. Nervous. That has got to be some sort of recipe for a psychotic break. Kinda kidding…kinda not. We just need another “big win”, and are holding on to our love for each other, certainly our love for Beckett, family, friends, our faith, and all the thousands of prayers from so many of you.

One. Day. At. A. Time.
…that should be an acronym or something – ODAAT – the new “YOLO” anyone? j/k 😉

#GoBeckett!

— with Leah ‘Whiteley’ Rupp at St. Vincent Women’s Hospital.