Tuesday, September 15, 2009

Old ways

Story time #1 with Daddy tonight. Did you have these books when you were little? I have such vivid memories of the Richard Scary books. This is the one about trucks, etc.. Things that go. Will remembers them too and is actually the one who tracked down these books when Liam was younger. I didn't realize it, but Liam has learned the names of most of the characters. Mistress Mouse, the tow-truck driver. The Pig Family. Officer Flossie. Gold Bug. And, Liam's favorite, Dingo Dog. We looked at this book last night too and this morning Liam told me that Teddy Bear's new name is Dingo Dog. (Knit Kitty is still called Dory.)

Nothing has changed. Will had a somewhat better day today. I think he's trying to be more active. Still short-of-breath most of the time, but every day that goes past without further obvious decline opens the mind a little more to the possibility that his lungs may reach a new plateau, lower than before, but not totally out of luck. And maybe we can stay there for a while, and make a new normal. Maybe. I know it is my job now more than ever to just experience each day and make the best of it. Let go of the past, and release myself from the tyranny of expectations for the future. It's not a strong suit of mine; but I get to practice.

I downloaded a bunch of information on bronchiolitis obliterans syndrome today but haven't yet organized it or read it. And I got a very sweet email message from a reader offering to help with access to on-line medical stuff. Thank you, I'll be in touch once I get my act together. Thank you everyone who has visited this space and offered kind prayers or intentions. Between the help and support we get from the virtual world and the daily help we receive IRL*, I know we are not alone.

We're going to try to be more about the every-day parts of our little days, how Liam is growing, whatever the facts are with Will so people can keep up with that, and less a vomitorium for anxiety around here.

*A small sample: Grandpa DM and Grandma KM were over at the rental again today, working with the workers to figure out the floor, and then going to the store to get the new flooring, and then taking it to the house. . .Grandpa DH and GG had Liam all day today and will keep him overnight tomorrow because I have an extra early work day on Thursday. A very kind message from a cousin who has enough on her plate to not need to take the time to reach out to me. Thank you.

1 comment:

mekate said...

Sweet E,
just sending love today
and knowing you have some luck left, hoping for a plateau as high as it can be,
also truly, knowing how hard it is to be in the moment. I SUCK at it.