When Michael was still walking and trying to do his own self care, but was not totally with it, he took a shower one day and opened the curtain and let the water run.

For five hours.

I noticed it when the water was leaking through the living room ceiling. After a month or so the ceiling started to buckle and I told my painter (who had done part of the upstairs) that we needed to do this ceiling.

Then Michael was in a hospital bed. In the living room (we have a double living room so his bed was on the opposite side of the buckling ceiling). We couldn’t open up the ceiling (which needed to be done) while he was there. And though it was an eyesore, I wanted him there every single day and not have that interrupted. Even for a few days.

The thought of Michael being shuffled to an alternate room, even for a little while, simply didn’t sit right with me. He was not a piece of furniture and that was his domain. I don’t know why but I simply wouldn’t hear of it when he was sick, to move him for a few days and get the ceiling repaired.

Someone told me that the thing they liked about coming to my house when Michael was sick was that he was in the center of everything, that we didn’t have him locked away somewhere in a bedroom. Not that I ever considered that for even one second.

He was in the living room amidst the hub bub that went on when all the kids and grandkids were there. He was stationed there and when he was feeling well enough we got him up and he sat at the table in the kitchen with the (what seemed to be) hundreds of us.

When he was in the living room, in bed, the kids played near him (Derek routinely stopped by to blow him kisses–it made Michael laugh every time).

The kids ran past him and the place was hopping all around him. When we had the boys birthday party here I don’t even know how many people and kids were here. But Michael was up several times that day. When he was well the whole thing would have given him a headache, but when he was sick he seemed to enjoy it.

Even when he was having a down day or sleepy day, we didn’t lower the volume. I wanted him to know we were all there. No matter what.

And I liked having him there and not off in some bedroom. The living room was, after all, one of his spaces. Half of it is taken up with his pool table. The other half is his way-too-big TV and couches. And his bed was in the section of the way-too-big TV so he could see it. So Michael reigned supreme in that space and we all spent a lot of time around him. I like to think it contributed to doubling his life expectancy (he was given 3-6 months to live and lived 11 months).

The house seems so quiet now. Even though it was just he and I most every week night and some weekends, I feel the space enormously.

I moved the couch into the spot where his hospital bed was because I can’t stand having the furniture arranged the way it was when it was “his” living room (when he was well). And I don’t want to see the space where the hospital bed (and Michael) was.

I always left the TV on for Michael (as I’ve written about on here). He always fell asleep with it on when he was well and if it was off for a few hours at night when he got up and went to bed, he turned it back on when he got up, always hours earlier than me. So, it was already on when I got up in the morning. To me, it was always on.

When he was sick, I left it on all night. I did not want him to wake up to total darkness. Ever.

We had no idea what the brain tumor did to his awareness of his surroundings, but I never wanted him to wake up and not know where he was or not be able to see. I wanted him to wake up and know he was home and all was okay.

Now, when I shut it off every night, it completely saddens me. I still have trouble hitting the off button on the remote. I can’t believe an off button can make me teary-eyed. I shut off the TV and all of the lights and whisper to the darkness, “I miss you so much.” I miss everything about him. Everything.

While Michael was sick, we didn’t use the pool table. When he was well he was a pool shark and routinely beat everyone (and the boys are all pretty good players). When he was sick, we did not want him to hear others playing the game he loved so much.

Last weekend Chris and Gina played pool. It was the first time anyone used the table in over a year. And, of course, they talked about Michael and how good he was and how he beat them, and everyone else. Chris, who is pretty good, said that all the times he played Michael he only beat him once.

It was bittersweet. To open it up, to play on his table, to pay homage to him in the conversation, but for him not to be there.

Now it’s time to tend to the ceiling which I’m having done professionally today and tomorrow. They’ve already pulled it all down and repaired the hole and taped and plastered over it.

Amazingly there are certain holes you can cover…

….some you can talk around…

and some that still seem