Wednesday, May 27, 2009

The week

My week goes something like this. Monday-Wednesday, drive across town to UCLA school for 3 hours, opening and closing parents' circle time. Monday afternoon, Occupational Therapy in Venice. Tuesday afternoon Physical Therapy at home, Thursday morning Occupational Therapy and afternoon Physical Therapy, Friday morning Deaf School then Speech Therapy and in between, any number of outpatient or ER appointments at Children's Hospital to see Reuben's 13 doctors. LA's road system is well known. Conquer driving here and you can drive anywhere. There are the usual tasks of diapering and feeding, plus the tasks of suctioning, equipment maintenance, checking supplies, tube feedings and oral motor therapy at home. The tasks of looking for a child with multiple disabilities, physically and with communication challenges are huge even with home help, but with which you can't ever really fully hand over responsibility, the success of the task is always in your head, make looking after Callum seem so very very easy. My goal is 10 books a day for Reuben between us all and we have a little abacus counter to make sure we're keeping on top of this. I spend much time learning sign language and teaching Reuben the signs I've learned and then some often late night time blogging, writing, editing photographs, studying photography and archiving. The blog replaces any hard copy photo albums which I'd love to get round to one day. My time with Callum is mostly M-W when Reuben is in school (Callum loves circle time and his face lights up at the teacher's songs with sign, Belinda now having included his name in the welcome songs). We walk out through the smart Italian style university campus of UCLA and into Westwood Village, full of coffee shops, my favourite Whole Foods where we taste international cheeses (my absolute passion. Ask Geraldine my sister as a kid what I'd choose and it'd be cheese over chocolate any time. I would eat a whole pound quite happily.), visit my photographic supply store and my fine paper supplier. It's a very happy time for me, because I know Reuben is happy in school with his friends and teachers and I'm walking around in Westwood Village breathing in the intoxicating aroma of jasmine and the visually arresting sight of bougainvillea with Callum in the baby sling. Callum is always content during this period because he's approached at every angle with complements on his lovely denim-blue eyes in a predominantly brown-eyed city and all of his senses are alighted.

The weekends don't always include a day out because we take turns on night shift and have chosen not to have any help from 4pm Friday til late Sunday night despite being allocated 24hrs/day care by Medical. And Reuben gets sick pretty much on a monthly basis which is in stark contrast to Callum having never been sick. So it's often a wind down time from a hectic week's schedule.

It's a very rare treat to be able to have friends over with their children to play in our back garden, time and health wise, and it was Reuben's first opportunity to go in the paddling pool, because I've always been too scared of his trach. But now that his balance is better, it became possible.

I used that half day to do a shoot of Kristina for her birthday. Cheer was flowing and we were all happy with the 1/8 of a bottle of red wine left which we shared between the 4 of us. It's important for the boys to understand that Mama has friends too as I try to teach him what a friend is.

And then my bubble gets abruptly burst because I'm accused of "lording it up", being frivilous all afternoon, a very rare afternoon.

1 comment:

amy and mighty max said...

What do you mean someone accused you of "lording it up"...were they serious????