pieces and packaging

one of the hardest and most isolating things about having a child with differences is that people want things to be well-packaged. people want things in bites. they want things with happy endings. because nobody wants to hear about a mess. nobody wants to untangle your mess. it makes other people uneasy. but really- a lot of life for us, is not well packaged, maybe not even packaged at all. it's often a lot of mess.

it's hard to write that- it's hard to write from a place that i know well, a place that will really always be. and it doesn't mean that life is bad or that next week won't be better, or that things are not "OK". it's just that things sometimes aren't. and that is what has to be OK.

it's the little things- the days when she is stuck like glue. when we're out to eat and she asks over and over, "where do sticky thoughts come from?" and has that far off look in her eyes- and i feel like i'm loosing her- to herself. and from where i sit i can see a table of girls her age laughing together- connected to each other- able to pick up the subtleties of language and expression and move the pace of the conversation appropriately and no one is left behind. and my face feels heavy and i can feel the sourness invading me, a hollowness- a sorrow. will she always be left behind?

when i picked her up from her afternoon program, she was upset and angry at some 6 year old who took her pile of grass- and she stomped her feet and shook her fists-while the first graders stare at her and back to me, and to her- as she tried to pull it together and tell me how mad she was- and i tried to find that place of protection for her, and for me, to separate us somehow- and i realized that i have no skills and i try to hold it together for her, for us, but inside i'm falling to bits, because this little display isn't some temper tantrum that will turn around quickly. this is a deep disconnect, a lack of awareness of how other people perceive her, a bad feeling, with out understanding of why people aren't getting her, and generated out of overwhelm.

how do you package these? how do you wrap them neatly?

today, i hold to this:
"yet this i call to mind and therefore i have hope, because of the Lord's unfailing love, we are not consumed."

and i do have hope.
and i love her intensely, and we are not consumed.
in pieces sometimes, but never consumed.