different drummer

 "if a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music he hears, however measured or far away."     Thoreau

i remember the smell of eucalyptus and her white blonde pony-tails and being teased for not being able to do the monkey bars.  i remember years of sticky thoughts and anxiety and picking her up from beneath desks that felt safer than classmates. i remember trials of different medications and diets and music and movements to help regulate her to fit into a world that has always felt strange to her. but then there were special schools and camps and other people working with my girl- people with training and patience. i remember giving her that- the opportunity to engage with people who are like her. and who like her. who get her. i remember there always being something that we were moving towards, the end of the school year, camp, the next year, with the assumption that we were moving toward the same land as everyone else, just at a very different pace and perhaps by another path. but there was a path.

now. it. seems. unbearably. hard. and lonely. and scary.
it feels like treading water in the deepest part of the ocean with no idea which direction to head to find land.  i'm tired. tired of treading and of spinning around and looking for land. it's the directionality that is lacking and that feels new.

i can hear her laughing in the other room- she is watching a show on my computer. i just got up from sitting in front of my bookcase which is covered with books about autism with names like 'lovey', 'the out of sync child', 'freaks geeks and aspergers' and 'no easy answers'. i sat there because i was looking for answers or ideas or something or maybe anything. yes. anything would be good because i'm pretty much at nothing. and before i could open any of them. i just cried. it was the old familiar cry about why do i have to have this shelf of books in my house? why can't i just have 'the blessing of a skinned knee' and that be enough? the cry of 'i don't want this' and 'it's not fair' and 'i'm not cut out for any of it'.  the cry that boils down to 'i'm exhausted' and 'i love her' and 'i don't know what to do', and 'help'.

i landed there in front of the books because she'd had a rough morning and i found her crying on the couch saying that we were asking too much of her. i asked her what she thought we were asking and she described the typical ADL's (activites of daily living) that everyone does in the morning and the evening. that was it. so i held her while she cried and wondered how on God's green earth, that, could be too much for anyone! she asked me if this is what love feels like and i said yes. love is sitting together when whatever it is feels like too much. we sat for a while and talked in the rare but good way- the less is more way- the way where i feel like for a moment, she hears me and i hear her- then we listened to silent night (the priscilla ahn version).



















the problem is.....there are no easy answers. period. there aren't even easy questions . what do we do? where are we going? what are our goals and how do we reach them? how do we support our other kids with one who demands what feels like everything? how do we stay in our days and smile and laugh?

she hears a different drummer. it is differently measured. and it's far away.  love hears the music of many drums. may i open my ears. may i be moved by them all. may i have the strength to leave the line and dance with her some of time. no matter how far away.