How did this happen?

Ed is actively dying.

These are the words the hospice doctor used.

What?  What????   How did this happen?  He's still talking, breathing, eating.  Just two days ago we were talking about plans for the winter.  How, in a day, is he "actively dying?"

I can't even remember the last 24 hours.

We went to sleep Friday night.  Me on the couch, about three feet from his wheelchair.  We leave a light on because the dark is too scary.  Sometimes we leave the tv on all night, too.

Around 4 a.m., he woke up yelling "help, help."  In the four seconds it took me to get up and turn on the light, he was passed out and not breathing.  I shook him, slapped him, yelled at him but couldn't get him to respond.  I remember thinking I'd taken CPR classes in high school - should I get his wheelchair back and do that?  Instead I ran upstairs to get my mom and dad.  When I got back downstairs, Ed was awake.  Breathing.  He had no idea what happened but he was really non-responsive, out of it.  Loopy.  Drunk.

Parents went back to bed, at 5 he passed out again and stopped breathing.  Within seconds, he was awake again.  But this time he was begging me to get him out of bed.  I told him you're in a wheelchair.  No - no - no he said, I'm 18.  I'm in bed, get me out of bed.

I decided to wheel him outside.  He looked at me and said "I know I'm 63.  I know I'm sick."  Just like that.  Out of the blue.

I called the hospice nurse.  I ended up calling her 5 times yesterday morning.   This is how we learned he has maybe 2 days.  He is actively dying.  In the active dying phase.

My heart hurts.  I keep rationalizing things.  I know I don't corner the market on loss.  On sadness. We've had this time to say goodbye.  To be together.  We've had an amazing two years of travel, warm winters, visiting family.  Of just being together.

For as much as I'm grateful, my heart hurts.  Ed is my rock.  How do people do this?  How do they go on???  I look at him and burst in to tears.  I have friends who've lost a child.  A parent.  A spouse. They have moved forward.  Ed's son died in 2012.  Only now can I appreciate the weight of that grief.

I feel like the sheer force of my love should wake him up, heal him.  Carry him through just one more week.  I find myself bargaining with God.   Just one more week, please?  But how would that make it any easier???

Do I feel any luckier he won't suffer through the horrors of ALS?  He'll die being able to tell the people in his life he loves them.  He hasn't had troubles breathing or eating.  He'll die peacefully.

His skinny little body is just so tired.  He doesn't feel good.  How do I make him feel good?  He doesn't want drugs, he wants to be lucid, he wants to tell people he loves them.  My goodness, though, I just want to wrap him up, hold him, have him fall asleep and just feel comfortable for a moment.

How do I do this???

update 8 pm Sunday night --  I wrote this earlier, around noon.  Around 4 pm, he called for me and said he was ready to go.  We'd talked to the chaplain earlier today, prayed with her.  He talked to his son.  He was really ready to go.

He seemed peaceful.  In and out, sleepy.  Ed and I said our goodbyes yesterday, in a way.  We talked about how lucky we were to find each other.  How much we loved each other.  We never fought.  We remembered healthy days.  Traveling.  We kissed a lot.  Cried a lot.

Today, he doesn't want to be touched.  He's tired.  I kiss him and he tells me he can't breathe.  I want to eat him up, wrap him up, never let him go but he can't be touched.  So I just sit and hold his hand. Since four this morning, he's been throwing up.  Everything.  Meds, water.  It's painful to watch.  I just want him to be comfortable.  At peace.

We've had a busy night.  Family over to say goodbye.  A hospice nurse stopped by.   She got him to try more meds - he threw those up.

Everyone is gone.  My sister is here, trying to get me to eat.  I came here for a short break. Wondering if I should post this??  Let people know what's going on.

Whether Ed dies tonight or tomorrow or next week -- I'm so grateful he's in my life.  He's a part of my story.  As selfish as I am to want him to fight and stick around, I want him to go peacefully. Knowing he's loved by so many.  Knowing what an imprint he's left on my heart and on so many other people.

I wish you all knew him like I do.  Kind.  Generous.  Super smart.  Forgiving.  Funny.  He was my cool cucumber.  My anchor.  How will I keep my feet planted on the ground without him?   When I met him, I'd ask him how his day was and he'd always, always say FANTASTIC!   No matter what. His glass was always half full.

I love him so much.  I will miss him so very much.  He is truly, truly the best thing to happen in my life.  I will keep my feet planted on the ground because of his love.