Saturday, April 22, 2006

[Photo: Mike and Bax at Bethany Beach in September 2005, 1 month before he was diagnosed. Thanks to Heather for all the great new photos.]

Today I awoke to the happy sounds of Baxter: "ma-MA? ma-MA?" along with a lot of cheery gibberish. It's a great way to start the day.

I got up, changed his diaper and mid-diaper change thought, 'What is this heavy feeling I have hanging over me?' In the past when this would happen, I'd soon remember the source of stress: a revise and resubmit on an article that I hadn't finished, or a conference to prepare for, or maybe a leaky toilet that needed fixing.

My current source of worry?

I'm not sure that my husband is going to be able to live unassisted for the rest of his life. I'm not sure he's going to be able to live at home again. I'm not sure that Baxter will ever know who his dad really is.

Lonia (Mike's mom) is leaving tomorrow to return to Cleveland where she has a fulltime job as a nanny for 2 children. She's been here for a month and has made this situation manageable by making sure the household runs smoothly and that Baxter is well loved. She does the shopping, laundry, checks for things that need tidying or inventory restocking. And she's just pleasant company in a house that would otherwise be unbearably lonely. And when I break down on the bathroom floor in a puddle of tears, she just comes in and wraps her arms around me without saying a word.

I'm sad she's leaving.

My sister is coming on Monday for a week and then 5 days later, I'll have other people coming into town. So, I'm not without help. But the sense of consistency and routine that we have created for Baxter over the past month is going to be shaken up a bit. He's resilient. He'll be ok.

Something I forgot to write about yesterday. I talked to Mike about the Magee Rehab center when he was particularly alert. I told him what they do there and that there is an inpatient program that he may be eligible for that would include 6-8 weeks of learning how to overcome and cope with certain neurological deficits he now has. His face lit up. “That sounds great,” he said.

“You’re not upset about being away from home for those weeks?”

“Not if it’s going to help me get better.”

I waited about 4 minutes (while I was giving him a shave) and then said, “Mike, what’s Magee?”

“A brain rehab center?” He asked.

Yes sir.


Peter said...

4 minutes....it's getting longer and longer, isn't it?

francine said...

I thought I'd post some thing that I think should give us all hope...

1. Many blog entries, including recent ones, show evidence of Mike using short-term memory. I tend to think that SOME is EVERYTHING because if he has it at all, then it exists and can maybe be improved with time and therapy.

2. He definitely has long-term memory. That boy seems to remember a ton of little nit-picky jokes and events and recognizes all of his friends and family. One might wonder whether his brain is being effecient by hanging on to the "ber" memory when space is so precious, but actually, all of those memories help make Mike Mike! Imagine if he forgot all of his friends and his past.

Just thought I'd share some hope. :)

Anonymous said...

Just a thanks to Danna for your amazing daily updates. Tom and I read them everyday, and we're always thinking about you, Mike and Baxter.


Anonymous said...

Just another thought about helping Mike with the short term memory, when people come come in maybe they could try to relate their visit to some prior knowledge Mike has of them (events, stories, etc.) We use it with older kids at school to help them associate new knowledge with old knowledge and make it easier for them to retain and retrieve that new knowledge. It's nice to here that he is remembering more now! Thinking about you constantly.


susan said...

hi danna. had a good time with mike tonite at dinner. he was able to handle most of it himself-- tho' depth perception is definitely off and he "pea'd" the bed a few times (which is to be understood-- if anyone has ever tried to balance peas on a fork while propped up in a hospital bed). he ate a good bit of food and definitely enjoyed the gatorade.

after din-din, he was TOTALLY in tactile mode. so, we played with the blown-up glove and i made him a water-filled glove (which he tried to untie to no avail-- thank god). the nurse also brought in some gauze, and i made him a long series of knots, which he untied very quickly. we did have a little spillage with his gatorade before i left, so the nurses got him a new gown and i put gatorade in the sponge bob/patrick sippy cup.

when we chatted, i asked him who ed rendell was (we put the tv on and there was a commercial). answer: former mayor of Philly. DING! he also knew your sister's name when i asked. DING! And where you were from. DING. (I assume the lakes region of NH is correct???)

With all that said, when i was leaving, he said "Bye, Beth" and I laughed (this is the 2nd time he's called me Beth-- maybe he is lumping the loud Jewish women together in his memory??? Getzie: when you visit, see if he calls you CSM.). I said, "Nope... can you try again?" He said Beth a second time... "Nope..." and then the third time he nailed it and said, "Crazy Susan Murphy."

I did stop at Target and got him some hand-ish things to play with including some creepy, ewwy, squeezy soft porcupiney looking thing that he will likely love. am gonna bring him some velcro from my studio tomorrow too... now if i can only find him a slinky...

kisses, susan

The Brain said...

What great observations and suggestions, guys. Awesome ideas all around. And yes, i have to say, that even I, the pessimist, do find comfort in the fact that mike has long-term memory and seems to recall some things from time to time.


The Brain said...

Susan - you're fantastic. Thank you so much. x0x0 danna

karenle893 said...

Alright CSM,we shall see. Despite my quiet,conservative personality.....
Big D and CSM....I talked to Kev about these cool finger puppets I saw yesterday. They of either artists (Frieda Kailo, Degas..) or Philosphers and they are magnetized as well..I was thinking it might be interesting MIke to feel and to play around with.
As soon as I feel like I'm no longer contagious I'll bring 'em up. If nothing else, it will give CSM and The Brain and maybe some of the cooler nurses some fun as well.