the camel's back

yesterday i lost it. not out loud. just inside.
it was zoe. again.
it was not that big of a deal. not that out of the ordinary. but it was a straw breaking moment for me.

it was 1 pm and she still hadn't brushed her teeth. it's not that her delayed brushing is this horrible thing or the end of the world - it's that her reaction to my asking became that. something minor and simple, something that should be a regular small part of her day- it becomes this massive monster of a thing.

let me explain the straw-breaking-the-camel's-back-ness of having a special needs family member. the camel's back is perpetually full. battened down. layer after layer. no more room in the inn full. it's packed with all the little holding of things together. all the accommodations that everyone makes all the time. all the put up withs. the things you overlook, the exceptions, the things tolerated that you wouldn't tolerate in anyone else. it's packed with the emotions that go with this. the grief. the fatigue. the gearing up for each something that you know will likely cause a meltdown. the asking of yourself, again, 'do you have it in you', and knowing that the only answer you can give, that you have to muster up, is 'yes', even if you don't. those are the bags on the camels back.

so sometimes it just takes something so small as the tounge sticking out, yelling 'i hate you! no one knows how i feel, can't you see i'm struggling?' refusal to brush teeth in mid-afternoon, that breaks you.

yesterday breaking me meant i indulged in a 30 minute internet exploration of housing options for autistic young adults. i let myself go there. i let myself feel that possible freedom that could come from not living with her. i told myself if things get too bad. if it becomes too impossible. if the other kids are suffering- there could be options.

to be honest, sadly, there aren't many. and the ones that are, are super expensive and located on the other side of the world. i just wanted to know what was out there because sometimes the answer to that internal, daily question of 'do you have it in you' is a resounding 'no'.

today i got up early and prayed. i exercised and mike helped with her morning routine. i let the day be full of accommodation and overlook, and inclusion. she spent the day with me, not off in her room, but next to me.

there was a moment when we were eating lunch, when i was reminded again of why i love this girl so much. on the table was a tiny, lego dog belonging to her brother. zoe loves tiny things so she was holding it while she ate and when she was finished looking at it, she carefully put it on the table and walked it across to join the other lego pieces. she didn't pick it up and move it, she animated it silently to herself, somehow respected it's toyness. maybe that makes no sense to anyone else but me, but it was enough. it was her being herself. her uniqueness on display. her attention to the things that matter to her. it was like i could see into her world for a minute and i loved that.

tonight i found her lying on her bed. i went in and lay beside her and rubbed her back. i could feel the knotted muscles and the curve of her spine and her left shoulder raised and tucked wing-like by her ear. i remembered rubbing her back when she was just a baby, and a little girl and wondering what life would feel like in her body- from her skin. wondering what her experiences would be? what would challenge her, pain her? what would break her heart.  i felt such a deep love for her and i wondered why it can be so hard to forget. to get lost in the bags on the back of the camel. to get lost from my perspective and forget her personhood. tonight, it broke me in a very different way. it was powerful. it was beautiful.

i began to write instinctively on her back, ' i-l-o-v-e-y-o-u'. she said, 'i know you just wrote that you love me, why?' 'because i do!' i said. and i told her. all those reasons - those completely special zoe reasons- her humor, her trying, her toy dog walking across the table, her expressions, her putting up with my failing to see her as she sees herself, my failing to know her behind and beneath all those camel sacs. and as i lay there rubbing her back, all i could think was that i would never, ever want her to go away. that i wouldn't want to miss out on really knowing her-and these moments- these little times that make the weight of the baggage lighter. that make room from more straw.