Sunday, July 14, 2013

In 'n Out

I spent the last week in Los Angeles with Gigi - she slept a lot and didn't have much to say so I was able to catch up on Facebook and my reader.   I did read everything you wrote but started the week with over 1000 posts so my usual charming, pithy comments (ha!) have been withheld in the interest of time management.  I hope y'all forgive me.

The last six weeks of work, since losing a co-worker, and this week, sitting next to my grandmother who would very much like to die, have been draining.  There were the usual stand by travel shenanigans so Matt ended up staying home with the kids.  It should have been a relaxing week - no minions to tend to & no corporate gods to worship.  I ran everyday and watched movies with her, as well as reading, but as the work stress slide away, I fretted over bedsores and those awful words, "quality of life", instead.  She didn't want to get in her wheelchair and go outside.  She didn't care what we watched on TV.  She didn't care what was for dinner.  She cared very much that the kids weren't coming but that was the one thing I couldn't give her.

As nice as it would have been nice to close out this week with some deep, insightful thoughts on disability and the meaning of life, I actually just feel tired and sad.  I bought some lamb chops for our last dinner together and couldn't find the tiny cast iron broiler she'd use when she cooked for just the two of us - I nearly started crying.  Then I had to cut the lamb off the bone and into tiny pieces for her.  I made potatoes instead of couscous, which is what she would have served, because the potatoes were easier for her to eat.  And when her aide had said earlier she didn't care for lamb and would pull something from the freezer I was relieved because that was our meal, and our tiny broiler wouldn't have been big enough for lamb chops for three.

Which was not a very nice thought, considering this is the lady taking care of my grandmother.
The broiler, found.

I also found myself thoroughly impatient with the online debate over inspiration porn & ableism, with parents grieving their reasonably healthy, living children &, perversely, those criticizing the parents for adding to the "grief narrative".  I'd like someone to come explain to my grandmother how the utensils she can now barely hold are ableist and figure out some other way for her to eat.  Assuming she can hear you.  Because the pillow keeps knocking her hearing aids out.  Damn ALL the words.

I have been a colossal grump.

I was even a total dick to one guy on FB over what, in retrospect, was a fairly innocuous bit about "better blogging".  I'm still cringing about that - the person I am in my head would have shrugged and moved on.  Maybe it's a good thing I haven't been commenting?  (for everyone else, that is)  Hopefully the universe will forgive me that one.

I usually DO enjoy the conversations.  Language matters.  It shapes our perceptions, chips away at the pity, and kills the "special angel" comments.  Advocacy, writ large over the decades, lead to our recent, delightfully awesome IEP meeting.  But the lady taking care of my grandmother, who once worked with disabled kids (*cough*  "kids with disabilities"), and who used about 10 different cringe-worthy non-people-first terms in one twenty minute conversation, made my grandmother enchiladas and told me about a time she called her friend, the council women, because her "little Downs girl" belonged in the regular class and she was going to take on the entire Los Angeles school district to make sure it happened.  Sometimes language is just a jumble of verbs and adjectives.

Sometimes we I need to be free to tell my story, to grieve Gigi's lost independence without regard for a  "disability narrative", or fret over my child's missing voice without being an "ableist".  Without worrying about how to get 18,000 page views or wondering if my header picture is attractive enough.   This was never really that kind of blog, anyway - obviously, given my 3 readers.  Matt and I are going to the NDSC conference next weekend.  Maybe I'll get a little artsy advocacy inspiration going and get back in the game.  

The quality only matters if you like cheeseburgers.


  1. I'm reading you sweetie. Now that my feedly is back up. You have every right to be grumpy, being in that hard feeling of clinging to the life drive for someone when nature/illness and even longing for release is pulling hard in the opposite direction is so painful, I've been there and still fall apart even after its all played out and done. Words fall around Us when we are living in the fire. No worries about your own. Hugs.

  2. I'm sorry to hear of your grandmother's decline and of your struggles this week. If you're still in the southland, I'd love to see you or have some coffee -- perhaps even In-N-Out! As for the ableism stuff -- it drives me insane at worst and bores me to tears at best.

  3. I am so sad to hear about Gigi :( It is okay to be a grump and I actually don't think you were a "total dick" on said blogging situation. Oh and of course your "skyline" is going to get you 18,000 page hits! Seriously, though, what is going on with Gigi is tough and it is okay to be sad, grumpy, and even angry. It is okay. Hugs and loves, friend.

  4. Hey, I'm late to this, but I always love your writing--grumpy, grief-stricken, funny--you allow yourself to be a real human being on this blog, one who's honest and thoughtful. Love it love it love it.