Which State is Grace?

We were told we could celebrate the last communion with my mother if we were in a state of grace and then they defined it by their very catholic terms.  We weren’t in the club, didn’t know the handshake but they sure encouraged us to get to know Jesus, all while singing “One Bread, One Body, One Lord of All.”  The hypocrisy infuriated me even though I had chosen to leave the pope and his followers’ years ago.

Grace?  I can’t imagine being deeper in a state of grace.  We spent 2 days in neuro critical care and 3 days in hospice, cloaked in nursing care that felt more like mission work.  The men and women who bathed, moved, dosed my mother never left the room without asking what they could do for each one of us.  They talked to my mom, they talked to us.  They all knew our names. They hugged us and gave us room to cry and laugh.  They did not ask questions about how many times we had visited in the last year and if we had told her we were sorry.

Friends far and near used social networking sites and texts to send hugs, sweet messages, offers of help at home.  Dogs were fed, beds arranged, schedules were changed.

Grandkids that couldn’t come and shouldn’t come were kept at bay, memories intact.  Thousands of miles in travel and not one incident.

As we finally gathered to lay her to rest, the only judgment, the least act of grace came from the church.  Gone was the comfort, gone was the inclusiveness of sharing our loss among the many to bear the load.  We were divided along their lines, so many of us found lacking.

We asked for a catholic mass because that is what mom would have wanted.  But she would have hated how we all felt, so left out.  “For it is by grace you have been saved, through faith–and this not from yourselves, it is the gift of God–.” (Ephesians 2:8)  Guess I have a different bible than Fr. Ted.  What I do know is that we experienced both mercy and grace throughout this week, in the people God sent to care for us.  We knew Jesus because He was there bathing my mother, He was there meticulously arranging her pillows and her nightgown, He was there with cookies and magazines, with cupcakes and guidance when I didn’t know how to get back.  He was there telling my husband to get back to the hospital after I had sent him home.  He was there telling my brother’s best friend this is the time to visit.

We confessed our sins to mom and to each other.  We sought forgiveness for long ago wrongs, let tears wash away the dirt of secrets and hurts. We nurtured each other, we retold stories for adult perspective.  We offered peace, we gave our gifts.   I can’t imagine a more graceful ending.

You can keep your wafers, we communed with God all week.

Radical Breathing

He was seriously starting to piss me off. I said I was fine, I said it was too cold, I said I didn’t want to go. So Scott put on his swim vest and joined the others in the snorkeling pool, periodically rising to say ”it’s so pretty, c’mon out” but my feet were rooted to the sand, my ass to the rock and my mind to the hospital room with my mother. I could hear the respirator breathe for her. I could hear the moistness of the tubing and the machine clicking the numbers. And then he would pop up again and ask me to look at the size of this stingray. But I could only see the size of her hands as they swelled, could only hear that breathing.

Then he really got obnoxious and asked “please.” For God’s sake, we are adults and rarely have to use those kinds of tactics on each other. “Please join me, please go get a wetsuit. Please .“ I nodded yes, but my mind was screaming “don’t you know I can’t breathe with that, I will die, I will drown, I will never wake up?” but I went to the wetsuit hut, stomping as much as I could in sand. Then I wandered slowly back, knowing he would have forgotten me, long gone with the group and the fish. I could sit back on my rock, safely breathing.

But he looked up and then left the water to zip up my suit. He took my hand and led me to the water. He stayed with me while I got acustomed to the temp. He arranged my goggles and attached my snorkel. He said we were ready. Just go under. Just dip your face under. I started to and realized with panic that I couldn’t breathe. I forgot how, I wasn’t even under the water, I couldn’t catch my breath, I needed out. And he stopped me.

“Just Breathe normally.”

What? Completely radical instructions. I was looking for the way to stay alive, to keep from getting water in the goggles, in the tube, in my lungs. I was looking how to not do whatever would make those machines start. I looked into his eyes, followed his steps, and breathed normally. And it worked. And I didn’t die and I didn’t hear machines. I saw fish.

I still sputtered a couple of times and I did hyperventalate when I forgot how to breathe normally…. Then I got back on track. And I swam with fish today, 3 weeks after my mother died. I thought of her all day. I thought of how I hated that she stopped living long before machines did her breathing. And I am so deeply grateful for a husband who refused to let me do the same thing.

Ava Maria on my IPhone

Her breathing became our obsession.  The number on the machine said 12 and even though the respirator was doing the work, I knew that 12 meant she was still alive.  We felt a flicker of hope when it shot up to 14 or 20, learning it meant mom was “over-breathing” the respirator but both our hope and the extra effort were short lived.  By the time they moved her to the neuro critical care, the machine was frozen at 12.  Still I stared.  The neurosurgeon showed us scans of mom’s brain, gently gave us clear indications of prognosis and life after this kind of stroke, yet it was still hard to see.  We had done this so many times; talking to serious doctors had lost the gravity.  How many times had my phone rang, hearing “Lisa, Your mom’s in the hospital, you better come over”?  I foolishly missed the lesson of those dry runs.  I still wasn’t prepared.

We made the decision to stop the ventilator; we all prepped for a horrid goodbye.  They sent us out of the room; assuring us they would rush us right back in once the medical folks did all they needed to.  They rushed, we rushed, mom held on.  The machine said 12 still.  And 17 sometimes.   When everyone left me alone with her for a bit I played music on my phone.  I waited for the numbers to go up, to show how pleased she was with me.  There was no movement.

We watched while her body fought, refusing to die while for years it seemed she had refused to live.  A half century or more of smoking multiple packs didn’t seem to diminish her heart or lungs, she fought on.  And I got angry.  Where was this will power these last years?  Was she choosing this just to show she was in charge, always?  Was I mad because she wouldn’t die or because she wouldn’t live.  Or because I waited for her to say she was sorry and I never did.

They moved us to hospice, took away our machines so we couldn’t watch the numbers.  So we listened.  For days, we listened to the tortured breathing of a dying woman and wondered is she really dying?  Repeatedly we were assured she was only functioning from the neck down and was slowing down.  We knew this because now we counted.  Even in our sleep, we sat up when a pause became too long.  When the pattern changed, when she began to pant, we exchanged looks.  A return from a coffee run would be met with,” she’s at 8.”  “She’s back up to 14.”  “it seems really raggedy”.

Often we asked them to do something, to suction her out, to stop the drowning sounds.  And they did, until they couldn’t anymore.  They moved her, rolled her, made her more comfortable, all the while we knew she was gone but she was here.  Her hands were swelling; her rings had to be cut off.  They talked to her gently, we did too. I forgave her, I asked her to forgive me, whispered words of love from grandkids too far away, assurances of love and gratitude.  I began to remember the good times.  Where the hell had those memories been?  We told her it was alright to go, to be at peace.   We told stories, we laughed, we dozed, we held on with her from Sunday until Wednesday evening when she changed her breathing one last time.

She spiked a fever and her color changed dramatically, again they rushed us out and said they would rush us in.  They bathed her in lavender and prepared her, an anointing.  The lavender was calming for all of us and we again began our vigil, having had too many close calls to really feel like this was it.

I was holding her hand up, trying to push some of the fluids back out, rubbing gently over the bruises and the sores.  Everyone was chatting.  And she stopped fighting.  She just stopped the racking breaths, the chest rolling fight.  I looked around the room to see who noticed and felt panic in my soul, paralyzed with fear.  All of the close calls before and this was so very clearly it.  I could have saved so much worrying.  But I couldn’t move.  My brother hurried up to her face and whispered to her, ”yes, yes, yes, just rest.  Yes, just rest. Just let go.”

Yes… yes……yes in time with her breathing.  And with that my little brother released us all.