Tuesday, December 17, 2013


According to Crush, the talking turtle, "dude" is the most essential word in the turtle language.  It can mean so many things.  If something is a total bummer, you can say "duuuude" kinda slow and sad, with a little head bob.  Yesterday would have been that kind of "dude"   If something is funny, can say, "du-hu-hu-hu-de" with a chuckle. A  day like today would be "DUDE!" as in, "you so totally rock!"

Started out with breakfast in one of the cafeterias, with Laura and I co-leading, and a therapist at the table with us. We had the ever popular breakfast burrito (with flour tortilla this time) and Simon was taking such big bites we all looked at each other kind of worried that he was going to choke.  But instead he totally plowed through his meal with only a little pushing back and both of us working with him (Laura doing 85% of the talking/coaching).

We tried snack outside at the cafeteria patio with just the two of us, and again, awesome meal.  We were both kind of waiting for the other shoe to drop at lunch, but instead...well, Simon busted through his meal so well that the therapist felt fine getting up to go say hi to another family towards the end because we were doing fine.

After the meal, (I was upstairs returning our wagon) the therapist apparently said to Laura "I haven't brought it up with the team, so it's a little premature, but what do you think about leaving early?". Laura looked at her and flat out said "No". We both want me to be able to get as much practice and coaching in as possible so I can take on as much of the work as I can.  When I came back down, she brought up us leaving early again, I think mostly as a form of affirmation and then said, "I think Laura should ditch this chaplaincy thing and become an OT. She's too good. She's just too good".  What do you say to that other than, "I know, she's kind of the greatest thing since sliced bread, right".

We talked about the next few days really being about me getting up on the horse, so to speak, which kinda scares the shit out of me. It also kind of feels like a set up for Laura to possibly feel crappy b/c I'll probably get smooth sailing since she's done all the hard work for me.

It's the plight of the primary parent, the invisibility with the reward for hard work going to other people.   As primary parent Laura is busting her ass at home all day/in the therapy sessions all week and then I come home and voila the kid is on best behavior and is doing whatever he's supposed to be doing and it all looks easy from the outside.

Even though I *think* I know how much work she is doing and try to affirm and give credit wherever I can, she's been doing this stuff mostly alone, with no one to really SEE her.  She does about 9 million things in service of our family and especially Simon, but especially the feeding.  That's one of the best things about this program besides Simon eating- this team of professionals is really SEEING her in her (sort of) natural habitat day in and day out.  They really see her and they are pretty much saying "duuuuuuude" in the awestruck-by-someone-ripping-a-totally-gnarly-wave sort of way.

To say they are in awe of her doesn't even begin to capture it.  I see it in their expressions, I hear it in their words and it thrills me to no end.  I can tell they're not just being polite or "cheerleading".  They have watched her manage one of the hardest experiences any parent can have and are pretty much standing lined up, clapping.  I have tears in my eyes just writing about this.

One of my top priorities in life is to make sure that Laura is doing as okay as she can be and that's she's feeling loved and appreciated and cared for. There are ways my words are platitudes sometimes, that I can't quite soothe that tender spot for her because I *don't* see what she's really doing. This team is able to do that for us- they're able to see and affirm her in a most authentic and real way.

It's...well, it's the best Christmahanukwanzaka gift a girl could hope for for her wife.


Liz Rose-Cohen said...

wonderful post. Your story is, as ever, truly extraordinary and ordinary at the same time ... because of course it is your day to day life.

I think you really capture the joy of seeing other people see how fantastic your partner is. It really is such a blessing to be reminded/agreed-with about the best qualities of the people we love the most.

The Rose-Cohens are following your journey and sending encouragement!

Jane said...

Thanks for all your posts. Sounds weird to say it but I've really enjoyed watching your journey. Keep us posted. From a cheerleader in Texas that you don't know from Adam.