Share. Connect. Love.

Posted 2019-09-13T18:24:22Z

9-13-2019

Grayson is starting "school" this week.  We have identified two opportunities for him to be on campus based mostly on his nearly constant questions like, "Should I be going to school?", "Where should I go to school?", "What should I do with my life?".[...]

Posted 2019-08-21T21:35:00Z

8/21/2019

We think about Grayson a lot and think about care we can give him, what therapists can give him, what pharma can give him, what his tribe and community can give him, the funding for and availability of helpers.  This is all stacked up beside what the care team has established as a sort of standard of care and allows us to see where some omissions are in our coverage.  Throughout all this one phrase has continued to be present around the periphery and that is "Line-of-Sight Care".  Essentially it was what was employed in Santa Clara and in Barkersfield with a professional never farther than arms' length and always within sight.[...]

Posted 2019-08-12T16:46:16Z

8/12/2019

Well, it has been one year.  Betsy and I aren't sure if it feels like it went by fast or if it has seemed to take longer, but we are sure that time has been bent and our reality distorted.  I struggled this weekend but not due to the same challenges, new ones.[...]

Posted 2019-08-06T18:55:55Z

8/6/2109

The see-saw tips.  As I am wont to do with the difficult parts of my life, I find a rhythm, some short-cuts and some time/labor savers and put my eyes down and trudge, tolerable, sustainable.  I know swimming upstream is hard, the progress is slow and if I cease forward momentum the current will surely undo my progress in a quiet but drastic way. Then the tip and what was upstream flows the other way.  With head down, trudging, the perception would be that progress is suddenly much easier, a welcome eddy or back-water, only now in the wrong direction.[...]

Posted 2019-08-01T21:27:57Z

8/1/2019

Today I will attempt to communicate with you all the rest of the story.  So often I aim for the positive themes, the healing, the progress, the successes and those little golden memory moments and the images we post or I paint have been curated to show a very family-friendly version of reality.  But the reality isn't actually very rosy.[...]

Posted 2019-07-29T22:59:19Z

7/29/2019

We had a long, nice weekend, culminating in a long over-due family lap swim at the Sports Club.  Maybe not so strangely, we all remember how to do it and can chase the line just like we always did.  It was very fun and way harder than I remember to keep-up with my babies.  G and I spend a few days without Betsy (Far Westerns) and really had a nice time.  He can be so calm and relaxed at times and just loves to have his hand held, his hair smoothed, his back scratched etc when he is being mellow.  But, if things get boring or there is a noticeable lull, begins to (regularly) get his frame by asking about his age, the date, if he is done with high school, if he should have a job, if he should go to college, what he should study, what kind of work he should do...  It feels disingenuous to always pivot away from those pillars of his reality.  To me it feels like he is trying to figure out, in a moment, everything.  I think he asked about college/work about 15 times while we were watching the 20th stage of the tour so we take turns with our incomplete answers, but we try to be as positive as possible, keep our options open and hope to not interrupt his calm.  I'll add that it is quite possible for his calm to be interrupted and we are only partially adept at managing the environment to avoid it, but it happens and that's when he gets the most persistent feelings that he needs to get up and go.[...]

Posted 2019-07-22T23:45:13Z

7/22/2019

"How is Grayson doing?" is the question we are always asked and it is a whopper-doozy for me.  I feel for the kind soul who asks me and takes on a listening stance, because I have a lot to say about that.  And apropos myself replete with stories, commentary and anecdotes about his successes, our stresses and my unfulfilled expectations regarding the availability of quality care.  But for those of you who may never have the chance to cross my path and ask the question I will try to fill in some of the story.[...]

Posted 2019-07-15T21:39:05Z

7/15/2019

I survived the long weekend!  Yay me.

With the summer drawing closed the swim season ramps up and Betsy was away at JO's since Thursday and I was on duty for the 4 day weekend.  Thankfully, I did have Cyd on call and she was a huge help in giving me some breaks and just to be present.  Her brother loves her so much and would do anything she asks and she has the sweetest way of asking that the two work like a machine.  To watch her "assist" Grayson making chocolate chip cookies is really a marvel.  She can guide him through the questions, solutions and steps in the kindest, most supportive way.  It is really amazing to watch and he loves it.  And he loved the cookies we got to snack on all weekend even if he didn't recall being part of the baking.[...]

Posted 2019-07-09T21:39:41Z

7/9/2019

We had a great family camping trip at Sly Creek Res last week.  I was worried about a multitude of things but mostly about nighttime wandering.   Most of us might have to attend to some waste release during a night, this is easy at home where lights and a familiar route make it routine, but camping is another story.  It will be dark, and cold, and unfamiliar but the pressure will roust you from sleep.  With round the clock supervision and a night-time tent buddy we avoided losing track of him, but at some cost to the relaxation for the rest of us.[...]

Posted 2019-06-24T15:24:16Z

6/24/2019

It is officially possible for me to make it through a long weekend with Betsy away.  Its not easy, and there is little to no time left for self-care but, with a little hand from some dear friends, I can make it to Monday without needing a sick day (just in time for the swim meet crunch season).[...]