preservation

today was a weird day. a roller coaster day. zoe alternated between being really amazing and insightful, and then regressing back to the wiggly voice that i haven't heard in months. the wiggly voice is one of the most annoying sounds to my ears- because it symbolizes her inner frustration- it signifies her loss of control. following suit, i also alternated between being completely calm and mature and patient and then wanting to wring her neck- but- i didn't- i kept it together for the most part. but the extremes bother me- baffle me. i think i get dooped. after a great morning of insight and connectedness- i can't believe that she'd scream bloody-murder and make the wiggle voice when her 3 year old brother tells her to get off the heater. it makes no sense to me. it's like she's having a seizure. like her brain is playing ping-pong. what's hard is that i get my hopes up- and then they have farther to fall.

this weekend i was on call. on sunday i got called to go in and help with a terminal extubation. what a formal, medical word that is. a family had decided to withdraw life support on their loved one. he had really bad lungs. the last few years of his life he'd struggled to breath. everything made him tired. changing positions made him short of breath. he had decided long ago that he didn't ever want to be on a breathing machine. but, as often happens, when someone begins to go- when their lungs start that final flailing goodbye- 911 gets called and people get intubated. he'd been in the ICU since that had happened to him last week- it wasn't what he'd wanted and he wasn't getting better. but there he was- ventilator tube in his mouth, feeding tube in his nose, triple lumen catheter in his neck vein (with bags of medicines for pain control, antibiotics,blood pressure support), blood pressure monitor line in his wrist artery, catheter in his penis, and wires to connect him with all the monitors on his chest. his kidneys were shutting down, his infection was overwhelming him, he would never breath on his own again. someones husband, someones dad, someones uncle. that morning they'd lightened the sedation to be able to wake him up enough to ask him what he wanted- did he want to come off the ventilator. he gave a definitive "Yes". so i was called to help with the terminal extubation. extubation is removing the tube for the breathing machine. terminal means final, because with out it he will die.

it was sunday afternoon. i was home with the kids and mike. everyone had a cold. we were watching movies. i'm horrified to write that this is what went through my head. do i really need to go in? can they wait until tomorrow?

this family had been in agony for a week watching their husband, dad, uncle, friend- suffer- knowing this isn't how he wanted it to be. his wife's birthday is next week, , his birthday is in january, their 40 year anniversary is at the end of the month.

i felt really badly about my initial, selfish thoughts- and then i dissected them. was it because i really didn't want to get in the car and go back to the hospital? or was it because i knew that december 12th this man would die? that he wouldn't make it to his 64th birthday, his marriage would never make it to 40 years. was it because i wondered when they woke him from his anesthetic sleep and asked him if he wanted the tube out, did he know it was terminal? did he know december 12th would be written in stone?

there is so much in our birthing and dying- but it happens in a moment. the presence or absence of spirit- life.

it makes me reflect on the drama of each day. the highs and the lows. the good and the bad. the growth and the regression. so much goes in to being alive. our minds dance with ideas and fears and hopes and plans and we are light and we are heavy. but the moments that change us forever are just a breath taken or lost.

so really, does it matter that she made the wiggly voice? no. it really doesn't. just because it makes me crazy, it doesn't need to mean that much. what does matter, is the long calm mature talk we had about what a nonverbal learning disorder is- with examples about how it affects her- in the day to day- in the moments. what matters is that i had the opportunity to share with her how she is extra special- what her strengths are- when she was focused and attentive.

and what matters is not that i had to go back to the hospital on a cold sunday afternoon. what matters is that this family felt supported- listened to- and admired for doing the most difficult thing a family can do- out of love and respect for their persons wishes. it's a lot harder to undo- then to not do. what matters is that december 12th is the day that they all reached peace about this- and they let him go.
the heart is really the first and last speaker. with a baby, they've had a heart beat before most other parts- but when they are born they take that first breath. when people die- their heart beats for a little while after the lungs stop. our hearts hold on until the oxygen in that four-chambered muscle is all used up. and that's when the spirit seems to go to.  you can almost see it- the moment when the spirit leaves. the ultimate end of a life.

i was teary when i watched the respiratory tech remove the tube just after the family stepped out of the room.  "this must be the hardest part of your job," i said.  "i've been doing this a long time" he answered, " it doesn't bother me anymore".  at first i was surprised because that day i was feeling soft and moved. i was feeling that intense union of our flesh and spirit.

but really, i get it. it's self-preservation. we all do it, it makes us human.   it's why i didn't want to come back to the hospital a few hours earlier. it's why i get angry at the wiggly voice instead of sympathetic to her inner turmoil.  it's why i sometimes lower my expectations for her growth, why at times, i've dodged hearing about other 11 year old's successes, it's avoidance of vulnerability. protection of our being. knowing our limitations.

so on december 12th i held his bloated hand while the tube came out, and then i left when his family was gathered around him, when his lungs had stopped rising, but while his heart still had a few beats left.  that day, i couln't bear to watch the spirit leave.