Monday, December 6, 2010

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.


IVF 40+ said...

Oh Elizabeth I am so sorry for your loss. Over the years of reading your posts I feel I got to know your family just a little. Will always sounded like such a kind fella.
My deepest love to you and Liam.
If you want an ear to listen I am always here for you.

Mad Hatter said...

Dear Elizabeth I am very sorry. It's times like this that I wish we all weren't so separated by physical distance because I wish I could walk down the street and knock on your door and wrap you in a warm, soft throw blanket and take care of everything for you and for Liam. Instead, I am keeping you and Will and Liam in my thoughts and prayers and sending you love.

Brenda said...

I came to your blog via a post of EB's and I wanted to send my condolences to you and Liam on the loss of Will. May time bring some measure of peace.


Sarah said...

I've never commented on your blog before, though I have followed it for a long time. Before I even opened your post in bloglines today, on some level I knew what it would be and my heart goes out to you. Of course there are no words, so trying to type any is futile. But maybe somehow just knowing that a random internet stranger is praying for you and your family is a small comfort.

Hillary said...

So sorry for your loss. I hope that whatever God (if any) you believe in, your family, your friends, and your neighbors will all wrap their arms around you and comfort you during this difficult time.

Illanare said...

I am so very sorry for the loss of your dearest Will. Thinking of you, Liam and your family.

mekate said...

Oh sweet Elizabeth,
Your silence here made me think that maybe this had happened, and I hoped beyond hope I was wrong.
I am so very sorry- more than I can say of course since these things are beyond words, beyond imagining, and beyond what anyone should have to experience or endure.

I will hold you gently in my heart as I always do, and hope that you find peace in knowing that above all else, beyond the struggles and sickness and IVs and ups and downs there was and is such love. I feel so honored to have been able to witness this small slice of your life from so far away.

from my family to yours,
the biggest possible Love,

Lisa said...

Truly a beautiful post Elizabeth. I know that there are no words that I can make it better, and yes, harder days are to come. Know that I am here if you need anything. I am still navigating my way around loss and grief (it's been 5 weeks today for me) and so I don't have much to offer. Hugs and much love to you. Take care of yourself, lean on your friends and family, think about happy times with Will, and let yourself feel what you feel.

Much love Elizabeth!


tireegal68 said...

Dear Elizabeth, you don't know me I don't think but I am an occasional visitor to your blog and last time I checked in you were doing a star chart and thinking of getting a cat.I am so sad to see the turn of events. I am so sorry for your and Liam's profound loss. You are a wonderful wife and mother and making sure that Will could be home surrounded by love in despite all the obstacles was a tribute to your strength. I hope you might be able to use this space to remember Will and to write about how you are doing. Sending you a big hug(())

Pundelina said...

Oh Elizabeth, I'm so sad for you and for Liam :(

So very sorry for your loss, you're in my thoughts.


The Zoo said...

I'm not much for words, I wish I was. Know that I'm thinking of you. Loss sucks.

Michele said...

Here from Kate's blog... My thoughts and prayers go out to your family.

debbiedas said...

Hi Elizabeth,

I've linkd here from Nourish the Whole Self. I'm so, so sorry for your loss. My son is 4 1/2 and in reading the questions Liam asked about his Daday I just broke down and bawled. I just can't imagine.

Sending you and Liam so much love. I look forward to getting tho know you through the workshop.