So--since we're tired all the time--and since we ate a bite at Mo's after I got my shift covered (I cried during that process, cried while I canceled my orthodontist and dentist appointments), and since Justin wanted to take a nap, we retreated to bed again.
I wasn't ready to sleep, so I blogged the last entry and then napped too.
Then the phone rang.
The phone should never ring when someone is sleeping. I know today we have the option to turn off the ringer, but I just can't do it--I'm always afraid I'll miss something.
Justin was so startled he didn't know what it was, but after I told him it was the phone, and he put on his glasses, he grabbed it.
"Want me to answer it?" I asked.
He handed me the phone.
"Hey there. How are you doing?" This is how his step dad Mark starts phone conversations with me. I never recognize his voice, which is embarrassing since no one else uses our home phone number but telemarketers. But based on past experience and current situation, I knew it was him.
"I'm OK. How are you? Do you need to talk to Justin?"
Quietly, I tried to listen while Justin listened and shook his head. After they talked I waited--Justin hates it when I ask but after almost five years of marriage he knows I want to know what he talked about with other people.
I do a lot of waiting now, as quiet as I can be (which is a HUGE challenge for control-freak-caretaker-who-claims-not-to-be-a-caretaker Olaina), usually holding his hand, or hugging him, or resting my hand on his back or his shoulder. There is nothing I can say or do to make any of this better.
"He said she's had two good days in a row."
"What did she do?"
"She talked to him."
Silently, we both know this means she whispered words like: "hello, no, I'm hot, I'm cold, I'm OK, I love you too, I'm tired." Maybe she smiled at him. Probably she smiled at him--she smiles when we tell her he's coming to visit. But that whispering I'm mentioning, it's whispering with great effort. You can see her facial muscles pulling the skin around her lips together to form the shape of words, and you have to lean in with your ear to her mouth to catch what she is saying. The whispers are the accomplishment of her day--after each brief conversation she seems to collapse further back into her pillows, exhausted.
But if you loved her and knew her (especially if you knew her before the doctors), you'd probably do all you could to hear those "I love you" words whispered and see that smile, the one that now looks like the smile of a child being told to smile for school pictures--teeth showing, dimples, necessary, and then gone.
Justin says Toni and Mark used to go dancing together a lot.
At our wedding, July 20, 2002, he asked her to dance. We didn't make a big deal out of family dancing so that we would not embarrass her, so the dance floor was full of guests when he asked her to dance. He pulled her up out of her wheelchair and carried most of her weight for a few minutes of one song. When I saw them, I grabbed our photographers and said, "Go over there, take pictures of him with his mom! I don't know how long he'll be able to hold onto her!"