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On most days I miss the old Michael. Sometimes a lot and sometimes a little. I cry a little bit each day. Some days I cry a lot. I’m not used to crying. After having 12 years being happy in life and love and all things, it is tough to have spent the past two months (has it really been only two months?) crying each and every day. Some days I feel the tears come and just hate them. Even being a grief counselor doesn’t stop me from trying to stop them. I feel my old abandonment well up and I just push back against it. No this is not happening.

I know that Michael has been the one person who has understood me and been there for me, unequivocally, day in and day out. The other day I thought of him never driving me to the bus stop or the train station or being there when I get off the bus or the train and I broke down and cried. That steady something that was him is gone from my life. The person always there for me. Always waiting. With a smile and a “How was your day, hun?” It’s gone and it hurts. It’s a big gone too. I miss it more than I ever thought I would or could.
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Yesterday I took Michael out for breakfast. He has not been out of the house since we ended therapy and I thought that a ride in the car and a meal out will do him good. He isn’t eating much these days but he loves to go a diner and have breakfast.

His mind drifts and wanders and it becomes increasingly difficult to get him to focus or share my world. I feel like he is in an underground tunnel sometimes or under water or in some netherworld that I don’t know and don’t understand.

He switches on lights in the middle of the night…the floodlights outside and peeks out to see if anything is out there. Before he got sick he was the one who walked around behind everyone shutting off lights and heat and air conditioning. Now he turns everything up in the middle of the night. I wake up to 90 degree rooms ablaze in light at 3 am. I turn everything off and when I wake up at 6, they’re all back on again.
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I feel irritated.

I looked at some pictures of Mother’s Day Brunch this afternoon. We had such a wonderful time and I felt loved and cherished by my family. The boys were there, my grandchildren, my daughter, Michael and my former in-laws. (the pix are on my Slide show on the other blog under the Pix page).
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“Before you started to fade
you gave me something to believe in
and that’s the best thing anyone can give.”

~ Shawn Smith “Wrapped in My Memory”

Yesterday I went out to do some Thanksgiving shopping and I realized I just miss the Michael that used to go with me and take me places. I don’t normally feel lonely but I am. I put this Shawn Smith song on in the CD player and cried and cried. I got my act together to get in the bank and the store and promptly lost my credit cards. I always forget that grief makes you inattentive.
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Michael finished radiation today. He got a diploma and he got to ring the bell and everyone made a big fuss. He was happy. Everyone was happy.

Somehow I felt irritated. I felt like I deserved a diploma and to ring a bell. I get him ready every single morning even when he’s sick and fussy and obstinate. I drive him over an hour each way and when the mountain drive makes him nauseous I sit on the Tappan Zee Bridge instead. I run in and get groceries while he naps in the car. I try to piggyback errands onto the time out. We come home and I get him food, medicine and blankets.

I felt like I deserved a diploma. I didn’t get one. In fact I was pretty much ignored.

I felt like “the chauffeur” and it’s probably a lot of “unmet need” stuff going on but even though we walk in together every day and I am one of the only family members allowed IN the radiation suite because he needs direction, today I was invisible.

On the way home he said, “You know what I’m going to do when I beat this thing?” I said, “No what?” He said “I’m going to volunteer to work with cancer patients.” He’s said this before and I usually smile. Today I said, “I thought you were going to say take my devoted wife on a trip.” He laughed, “Yeah, that too.” Some part of me wasn’t joking.

Then I felt guilty for feeling this way…sigh.

It was a happy day. I think.

Hi everyone. I did not post for the past couple of weeks because things had gotten a bit worse. Michael was in a perpetual fog with some moments of clarity where he knows that he’s completely confused the rest of the time.
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Thanks everyone for asking how we are. This is an update.

About 10 days ago the doctor took Michael off steroids because he had reported feeling edgy and argumentative. Even though he was on a small amount, he said he now understands “‘roid rage.” He wasn’t outwardly bad but he was jumpy when the kids were around and he would report feeling edgy for no reason. He would occasionally, uncharacteristically, say mean things.

Last Friday we came home from radiation as usual. I fed Michael, as usual, and he fell asleep. Again, as usual. But he stayed asleep until about 7 pm on Saturday night.
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