it’s the small, secret things that make a life. the hidden actions between you and your creator that you don’t regret, but rather forget, immediately, because there was no wrongdoing, only pure motive, that will be remembered out loud, from the rooftops, on that day. i’m sick of social media and its law of diminishing
The other night we went to Gigi’s Playhouse. It was teen night – young people with Down syndrome, 17 years old and up. They were getting together to hang out. We’ve done this before, met with groups, hoping for connections, hoping for more than a simulation of a night out with friends, hoping for friendship.
there are people around me all the time. before most days, most years, i was alone. now i wake up with them, drive to them, work with them, come home to them, sleep next to them and wake up with them once again. before i was around them. i took care of them, but then
and i’ve seen your flag on the marble arch and love is not a victory march it’s a cold and it’s a broken hallelujah mazzy wants to be in the choir. she’s sat in the audience applauding her brother and her sister for a few years now. she wants a turn. but the polite email
on either side of the path tall grasses hold bursts of white butterflies when we brush against them. we can see the sea as soon as we begin our hike but as we keep on, stepping over hermit crabs as we go, a turn in a new direction puts the whole of the bay into
i’m trying to figure it out. i’m trying to understand what i’m supposed to do. am i supposed to lead? am i supposed to write? am i supposed to interpret? most likely its all of the above. and mother. and wife. deep breath. there is a ferocious unsettled spirit in my chest. it rages and
this summer there was internet buzz over the near eradication of down syndrome in iceland. people wrote articles against eugenics and disability. and i agree, it is terrible, right? deciding that your child probably shouldn’t live because they may have down syndrome? i mean, geez louise. mazzy wasn’t too concerned though. she listened to a lot of beyonce this summer. last
i had a dream last night about bloggers who write about their children with down syndrome. some are so famous online that you’d recognize them in public. in the dream i was walking by lake michigan and a mother had set up her kids for a photo shoot complete with lighthouse in the background. mazzy
my dad was back in the stacks and the snow wasn’t stopping outside. big, fat snowflakes falling themselves down on the lucky streets of ann arbor, michigan. i looked over and saw my husband considering yet another collection of words to stick into his brain. what a beautiful night. my mother was watching the kids.
that will shakespeare really knew what he was saying. “And summer’s lease hath all too short a date.” ain’t it the truth? i decided that summer is like one long day and by mid-july i knew that the evening was coming on. i told someone my theory and they said, “but summer nights are the