This Star Won't Go Out

Esther is slowly moving toward a “normal” schedule. She typically sleeps 12 hours a day, from 2am–2pm. We are trying to arrange a more balanced 12am–12pm time table which ain’t easy. Problem is she insists that we be around to tuck her in (which we’re glad to do). We sometimes retire to bed and have her call (by phone) when she’s ready to sleep. There are night time meds and a feeding tube to prepare and lotions to apply and blankets to settle and re-settle. Sometimes a long talk and/or general silliness. I occasionally bark at her though she’s never been unreasonable or demanding. In the daytime, there are still more medications and weekly hospital visits and just hanging out time. Yesterday she was up at 7:30am and had a great day drawing pictures, writing in her journal, watching anything on the HGTV station and perusing old sitcoms (she especially likes Cosby, and a few other shows that I think peculiar . . . ). Today, though, she’ll pay for that good day and struggle to join the daylight. She writes well and with depth (not that I would know . . . ) and draws amazing pictures of cats, people, and sundry other things such as landscape scenes. She recently drew a fabulous cartoon of Graham and Abe diving into a pool (they are taking swimming lessons at the Y). We retrieve any art or prose she tosses out which she discourages and finds bizarre but mom and I are trying to save so many snowflakes . . .


Be sure to check out her mostly unique and often hilarious youtube postings which you can find on the Links section of this site. All our love to you dear reader!



Snowflakes,

MARSEILLE, FRANCE, 2006





December 18, 2008


Wow, okay so today was the second eventful day in one week! :) It’s crazy!

I woke up at 10:30 am today, and decided to just stay up from then on. But then Dad reminded me that Angie’s Christmas choir concert was later, so I took a nap from around 3 pm–5 pm, when I woke myself up. So, since I fell asleep at around 3:30 am last night, I got a total of around 8–9 hours. Not that great, but alright.

Anyhoo, I got up at 5 and got all dressed and ready (and stressed . . . I get stressed easily . . . ) and by like, 7, we left. I walked into the concert hall/stage and me, Mom, and Abby sat in the front row.

At first I felt like everyone was looking at me, which I’m sure a lot of people were, because let’s be real and completely honest here, a girl with a tube coming out her nose attached to a huge tank attracts some lookers. But only for a few seconds was I self conscious, after that I was like, whatevs. I mainly focused on the singers and tried to forget people may be able to see me. Besides, I can’t stop what people think. They think what they think. :\




Christmas 2008


dear, Parents . . .

(Merry Christmas!) . . .

I wish I was better at describing my feelings, because there are so many things I would like to say. First of all, sorry if my writing is hard to read: I try, and, like, epic fail, but I think it’s translate-able. : ) Secondly, it feels great to be here, 2 years (plus) since being diagnosed, and many insane thingys later. I mean, not all of them were insanely bad, some were good.; )

Like, remember wheeling me in the wheelchair down Cours Mirabeau road in the Christmas time? There were all those Christmas kiosks, and stands, and all those rides. I remember riding that ride that you sit in and watch a movie of, like Star Wars, and the ride jerks you around like your falling and stuff. Me and Graham went on once, and the second time Abe came, and he was so scared I had to hold him and use my feet to hold myself. Hah, we decided it was a wee bit too scary for him. : D Oh! And do you remember, I won that Winnie the Pooh stuffed animal from that claw/crane/grab machine? I still have it! It’s so cute.

Another memory I have is going to the Wringley [sic] Brothers carnival thing! The elephants and clowns were so cool! Well, the ELEPHANTS were cool, anyway . . . :(