when you have a disability, the sky turns lavender in the morning. the popcorn flows like water most days and the momma, well she tries to fix things. i’ve only known motherhood this way.
something is wrong and i need to fix it.
we’d found a doctor who was a buddhist that had an idol in his living room. he woke up early and he sat cross legged in the living room and stared out his window at beauty. he was our great hope when mazzy was six months old. communication he told us. communication is key. because if you can’t communicate than what is life?
as someone who values being heard and telling the story, this arrow imbedded deep. yes. this is the way to fixing. if i can understand and if you are understood, then we’ll climb out of this cavern of down syndrome and by the end of it, i’ll teach you latin.
this morning getting ready for school i spy that she’s gone missing. breakfast is on the table. minutes are ticking until we walk to the bus stop. where is she? i call out and there is no answer. i always panic a little when i can’t see mazzy.
i head downstairs and find her in the playroom.
“maz, what are you doing? it’s time for breakfast.”
“imma. imma wear a costume. imma be a fireman.”
i look and see the fire coat in her hand, the plastic gas mask in the other. she’s already demanded that she wear a princess dress to school today or she will not eat an english muffin. i said okay.
“not right now, mazzy. what happened to the princess dress?”
she looks up surprised.
“oh! you’re right!”
she walks pass me and up the stairs, but not before grabbing a stuffed pink monkey.
“hey mom. is it okay i bring monkey prince? bring monkey prince to school?”
i give up. small demands made that do not equate to my reality or anyone’s idea of reality have, in the past, led to pinning mazzy down trying to wrestle the idea of her will, her way, out of her mind. everyone ends up bruised and breathing hard.
it’s not worth it.
“yes. yes, bring monkey prince to school with you.” it actually sounds like a good idea to me at this point. “let’s go eat breakfast.”
that doctor had a mantra for me as a new mother with a broken baby in my arms.
“live in her world. she can’t live in yours. enter her world. live in her world.”
he never mentioned that the opposite was true. i can’t live in hers. in the same way mazzy can’t live in mine, i don’t have her mind, her way, her vision. i don’t have down syndrome no matter how hard i try.
i’m guilty. i should have dropped my agenda and put on the other fire coat. we could have extinguished the burning buildings in her mind. let the bus come and let us miss it and when mom doesn’t come back upstairs, abe and eleanor will creep down and see what’s happened. they’ll walk into a wonderland of mom playing instead of the order of the morning and we’ll all don on our favorite costumes and we’ll remember that other world some other time, for now we all have down syndrome and morning isn’t breakfast – its putting out fires.
but i didn’t. i’ve stopped doing that. and i feel bad. i feel like a bad mother to my precious girl that i can’t quite understand. i’ve made a choice some time back. i’m going to be myself and i’m going to let her be herself, i don’t know what else to do right now. maybe after some time goes by we’ll meet further down the road and we’ll be more alike than that good doctor thought.