New bed

 

This was Will's hospital bed at home.  There's no easy way to think it and no good way to communicate it but to be out with it: Will died at home on November 27 at about 1:22 in the morning.  I know the time because I had been there with him for the past 48 hours or so and I had my head on his shoulder and my hand over his heart when it fluttered and stopped, fluttered and stopped, and then just stopped.  We had been giving him medication every hour through his IV port trying to ease his suffering. It had been a long two and a half days.

I woke Will's sister.  Called my sister downstairs.  She trained as an EMT (in addition to her zillion other useful skills) and confirmed what I already knew.  We called Will's parents. They came over (I think they had left only hours before).  We called the funeral people.  They came over.  Turns out they are neighbors (about 4 houses down) and thought this would be a good time to let me know how  they had tried to buy this house too, but we had got it right out from under them.  I said, "Oh, umm, sorry?  I'm sure your house is lovely too."  They went away and took Will with them.  And now he's just gone.

What happened you might ask.  Well, nothing really and, of course, everything.  Will was in the hospital in mid-October.  His decline in lung function was continuing and he was not recovering.  He was increasingly short-of-breath all the time.  Going up the stairs became something to be carefully planned and limited to once a day, if at all.  Will didn't want to die in the hospital.  At the end of October his doctor of going-on twenty years recommended hospice care. We tried that, but they kicked us out when the medications Will needed for palliative care proved too expensive, or something.  That part is still a little mysterious to me. 

Will went back to the hospital in mid-November.  Through the grace of God and big, big efforts on the part of Will's hospital doctor (pray you are tended by this woman or her twin if you ever get sick, really sick) and his regular doctor, we got him home with put-together palliative care and all the oxygen they can put in a house on November 22.   He had really good days on Tuesday and Wednesday.  Wednesday my sister arrived.  Will sat a the table and ate dinner, played with Liam and Chris.  Planned for Thanksgiving.  On Thursday morning he started out okay, but then almost immediately called me from the kitchen to "help."  More oxygen, he said.  We turned up all the oxygen we had.  Gave the medications we knew to give.  A nurse came over.  We were all still planning at this point -- how to make this set up work as best as possible, what would Will want from the nurse over time, that type of stuff.  We thought it was just a bad morning.  But by mid-day he was getting worse, not better.  By late afternoon we had paged the hospital doctor and got new instructions, been told this was probably the beginning of the end.  Sent Liam to my parents.  Waived off Thanksgiving dinner, half cooked.

By Friday morning he had pretty much stopped talking.  By Friday afternoon he couldn't swallow at all.   More new instructions.  We gave medication through the IV port. 

I don't know what else to write.  I wish it were different.  We're planning a memorial service for Friday.  People have been amazingly kind.  Liam is steady -- happy and sad.  The worst is when he says: Mommy! We used to play [whatever] when Daddy was still alive.  No, the worst is when he asks: Mommy? Will Daddy be back in the spring?  No, the worst is when he asks:  Mommy? Does Daddy still have the big, big sickness even though he died?  No, the worst is yet to come.  His worst days are long in the future.  So we bend towards it, trying to think of what we can do now to make those days easier, more understandable for him.

I'm not sure what I'll do with this space.  There is much going on.  Much remembering of Will.  Much growing from three towards four.  We probably will be back here in some form, someday.  In the meantime, I thank anyone reading for helping me to have a space to remember what I want to remember, in the moment but also held apart.  Thank you.