Waiting Room Skills...

Many of your dear readers have asked just how I'm keeping busy these days. Some have even asked if I'm getting bored! Well friends, let's just share what my schedule this week looked like to give you an idea of what I've been doing to keep busy:

This Week:


  • 12:15 Physical Therapy (in San Carlos)


  • 8:30 Labs
  • 9:00 Chest X-Ray
  • 9:45 Infectious Disease
  • 11:00 Psychiatrist


  • 9:30 Bronchoscopy
  • 3:30 Psychologist (seriously, always having to move this despite it being one of the most important things I do all week)


Break! Made a jelly roll cake. It was delightful.



  • 10:00 Labs
  • 11:00 Take cookies to NICU nurses (this was very rewarding actually)
  • 1:00 Transplant Surgery Consultation (more to come in next post)


Week at a Glance:


  • 7:30 Labs
  • 8:00 Echocardiogram
  • 9:00 Transplant Clinic
  • 11:00 Heart Biopsy
  • 12:00 Chest X-Ray


  • 9:00 Psychiatrist


  • 12:15 Physical Therapy (in San Carlos)


  • 9:30 CT Scan
  • 1:30 Psychologist


  • 9:30 Labs
  • 10:00 Deliver cookies to #Dreamteam
  • 10:30 Deliver cookies to D3 Team
  • 12:15 Physical Therapy (in San Carlos)

When your week is delineated by appointments, you get used to waiting. Or rather, you get used to the fact that you HAVE to wait. Waiting never gets easier, particularly when the Darth Vader mask is on.

You just sit and toggle the snapchat refresh or you stare at the wall, you observe the other wait-ers and wonder if they too are being seen as late as you are. Sometimes people are seen in the order they arrive and sometimes not, this isn't a fine deli.

By the 45-60-min-late mark someone will come out (maybe) and apologize for the delay, explain that they are running behind schedule and here is a $5 coupon for the cafeteria for the inconvenience. $5 at the cafe ain't bad, unless you are sitting there waiting for news you know won't be great and you just want to get it over with as soon as humanly possible. So, please have your $5 and just get me in the door...


Currently Listening To:

"Orphans" by Mychael and Jeff Danna from The Good Dinosaur

So I cried pretty hard watching this film. The story itself of loss and recovery, the melodic emptiness and resonance of the score, and this particular scene of sharing loss and grief hit me in ways I don't think Disney intended.

Dinosaur Arlo has lost his way and is miles from his family's farm.  He and Cave Boy Spot protect each other on their journey through woods, river beds, and plains back to Arlo's home. Arlo draw lines in the sand with stick figures showing his family. Arlo nudges down the largest stick, showing his father has passed. At first, he thinks Spot does not understand. But Spot makes his own circle and nudges down both the mother and father figures beneath the sand. In an unspoken depth these two creatures understand the other's pain and loss.

This scene became so much for me at once about my grieving the loss of my own heart which was my friend, even in the most trying of times, for twenty-four years. It also became a reflection of seeing my donor pass in the other family's circle. Arlo grieves, but he rejoices at the idea of returning home to his family. Spot grieves his family and has no home or hope outside of Arlo. This drew a parallel to my donor family. I grieve as I rejoice, but do they only grieve?

Many motifs resurface in this piece, just as many elements of ourselves resurface when tried by death. The solitary piano echoing in the river canon is mirrored by the Native American flute that sounds at once so sorrowful and yet so full of past life. The "Plains" violins of Arlo's homeland reenter and Arlo's home, his hope, comes back to him as the music turns to a major resolution. Even here the score turns slightly minor again. A cautious optimism reminds us that there will be more hurdles in life to come, but we can, for the moment, let joy in even as we endure grief.