mind the (widening) gap

life with zoe has never been easy. it has been rough since the start.
she was small and breech and i had to be induced. she was a sleepy preemie and it took her a month to gain back to her birth weight. at three months she was diagnosed with klippel-feil syndrome. at four months they found two small holes in her heart, by then i had some holes in mine. watching her and worrying about her became my normal. milestones ticked by and she didn't reach them, there was always a delay. rolling over came at 8 months, crawling at 14 months, walking at 21 months. talking was there, but it was parroted and repetitive. she flapped her hands when excited and she was excited over things that other kids weren't. at preschool she preferred conversations with herself in the mirror to conversations with the other kids. she cried and covered her ears when she heard a coffee grinder, a blender, a vacuum cleaner. and those ears could hear only a few notes and know it was django reinheardt. she was not like other children.

kindergarten was hard. it was loud and filled with challenges, like learning to read, and finding your way around, and those impossible monkey bars that everyone but her could do. there were birthday parties that happened with out her, and awkward conversations with parents at birthday parties she did go to about how their child was used to being kind to people with disabilities. friendships were few and far between. homework was agony. but she could find a lonely adult in the coffee shop and make them feel like they were queen.

the years went on like this and we had other children. other children who proved that yes, she was not like other children. things got harder. things fell apart. her puzzle-like world began to come clearly into focus and she knew she was not like other children. and that is scarey and lonely and isolating. slowly, the gap began to widen.

other kids began to ride bikes and ride to town, stretching their worlds of independence. but bikes require balance and coordination and motivation, and town requires a sense of direction. other kids began wearing jeans and make up. but jeans are scratchy and makeup is sticky. and school got harder. it wasn't learning to read is was learning to understand what you read and there were metaphors and symbolism and making connections with other books. characters became complex, they weren't just good and bad like fairy tales, they were both sometimes and that was confusing. and social things got harder. the rules became more subtle. everything was not so black and white. and the noise was still there- vacuums and weed-wackers and bells between classes and ticking clocks. the puzzle was getting bigger and the pieces were getting smaller.

in three weeks she'll be 17.

today is day 4 of 9th grade. or it was. because we have decided to mind the widening gap. to listen to the cries of a girl who is exhausted. whose world for 17 years has demanded more from her than mine ever has me. to be honest that the gap between her and her peers has widened to place where she could fall in and get hurt.  we have decided that what matters is her heart. here laughter. her sense of self. that she is at risk of falling into the abyss of that gap never to return. that we could lose her to our desire for her to be someone she is not. we have decided the best thing to do is stop pinching her into a world that doesn't fit, and adjust her world where we can so she feels more softness than edges. more love than defeat. more success than failure.

so today the three little kids went off for their fourth day of school and zoe got up and got dressed and stayed at home. we met with the school and shared where we are, what we are hearing and seeing from zoe and we all decided to take it very slowly. she will come with her aide for her drama elective, and the rest of the day will be creative learning from home. for now.

the widening gap is hard. it pinches and pulls and mocks. it says "you've failed!" it tries to shame and blame and return you to places of "what if" and "why didn't i". it calls out to your sorest, oldest spots inside - the ones that scream for value in the wrong places  - the ones that fool you into thinking that other people are responsible for your being enough- that identity is grounded in markers of our successes or our kids successes. poppicock and hogwash! as zoe would say.

yesterday after listening long and hard to zoe and her aide about the day, and listening to the voices of the widening gap, i decided to listen to God. i inquired of the Lord. and as usual, i heard the gentle but clear truth pointing me to see where my small self sat in all this. He said things like, most of the world doesn't have even an 8th grade education, and they are functioning and happy. and things like, don't you think i have a plan for her? because i do. and don't you think that it's perhaps and probably a better plan than you could have? 

this is about trust and obedience.

in exodus God commands the israelites to respect the sabbath during their time wandering in the desert. this was the time when God was providing all their food in the form of manna that would be on the ground each morning for them to gather and eat that day. and that day only. anything they tried to save would spoil. except for the day before the sabbath, when there would be enough to gather for two days and it wouldn't spoil. God provided for them to be obedient. He cared so much about their obedience that he changed the properties of the manna so that only on friday night the left overs wouldn't spoil but on every other night it would. that speaks to me of a present and relational God. a God who can be trusted and who will provide for me and give me what i need to be obedient.

17 years ago i was on bed rest. i knew i was having a girl and that we were going to name her zoe which means 'life' and that i couldn't wait to meet her. i didn't know anything about klippel-feil syndrome, or autism and it never occurred to me that she wouldn't go to college or learn to ride a bike.  but i did know this God who i could trust to provide.  i had no idea that the trust would be like the manna- that i would need to trust daily for a portion of grace. and  that i would be given just enough- enough for that day- for that diagnosis- for that parent-teacher conference- for that episode in the grocery store. i had no idea that provision would be in the form of therapists and school aides and seamless clothes. but i did know those everlasting arms that are holding us as we mind the widening gap.