right now, somewhere very far away in space, a vehicle is traversing mars. it's searching the ground, the landscape, and the rocks, for signs of life. i'm not a fan of sci-fi, or being high off the ground- so while i can appreciate it - it's not that exciting for me- besides i'm too concerned with traversing my own mars- life with zoe.
in a few hours i'm meeting with her teacher, because school starts next week, and well, we kind of need some sort of a plan. so i've "prepared" a list of topics to discuss. they are mostly in the form of questions. questions that i don't have an answer for.
- uniforms? yes? no? depends on the day? will my specially ordered "SOFT" clothes be okay if in school colors? because we have sensory issues. tags or seems or something too tight, or too loose, can send her to the moon- it can distract her (and therefore everyone else)- it can unravel her.
- homework? i know there is homework in 6th grade. but please don't torture me!! won't 6 hours of school be enough? but what about fitting in to the class? perception? participation? do we just do less of it?
-scheduled breaks? we are talking the attention span of a goldfish. will breaks help? will they cause more distraction in the breaking and re-entering?
-'engine helpers' ? she likes to fiddle, to hold small toys in her hands. this helps her feel less anxious. but what if she starts talking to junior asparagus? or what if she throws him in frustration because she didn't get the answer right?
- tests? oh dear. what happens there? is she timed? does she get help?
as we were making this list- i began to panic. i began to think that we are CRAZY. that this plan is DOOMED. that we are set up for DISASTER. i began to feel sick for everyone involved- zoe, her teacher, her classmates, me. and then i began to do what i always do after i panic- i began to grapple for control- to put up armor to protect us - to make plan b and c and d. but. we live in uganda where options are severely limited. so then i did the most logical and helpful next step- i opened the flood gates of fear and regret. what were we thinking! moving here? during teenage years? with zoe, a neuro-atypical kid? where are our supports? where is barbara mcclure? and social group? and her psychiatrist? and her sensory gym? and my mom?
suddenly life in africa began to look a lot dirtier, grimier, smellier, and eternally frustrating. on the drive in, the traffic appalled me, the trash piles revolted me, the cow walking at me in traffic really annoyed me- the potholes, the diesel fumes, the broken chin strap on the boda driver- all of it screamed of disrepair, and lack, and hopelessness.
i don't like to wallow. i don't like to look at life that way. so i moved on to compartmentalization. leave the zoe box for a while, leave the messy africa box, go to your work life box- open up that one- remember your purpose, your mission. i had been called by 'reach out' clinic today asking what my plans were, i'm due for a meeting with 'action for the needy' and we go to luweero for mobile clinic in a few weeks, i need to find some land to get farming, i need to sign up for the medical boards re-certification exam.
but then i remembered that compartmentalizing your life with a special needs child is (like everything else) - different. the work box, depends on the zoe box, because zoe touches everything. there is no 'arriving', no guarantees, no non-pull-able rugs. and. this. is. hard. it's hard hard.
so i closed my eyes and indulged the wallow for a minute. in my mind i sat in my leather seated pilot with the steering wheel on the normal side of the car and listened to the functional car stereo. i drove down smooth roads, and i took myself to starbucks and ordered a hot, to-go latte and organic horizon vanilla milk for the kids from my car window- just because i could. then i drove with the windows down, because the cars have intact exhaust systems, and smelled fresh air. there wasn't even any traffic, so i drove to wholefoods. oh. my. word. they had gluten-dairy-free everything!! they had normally priced peanut butter and nutella, and the lights were on in the store so i could see! they weren't out of milk! they had free samples! and it was air-conditioned. then we went to the emory pool, where there was no broken glass at the bottom of the deep end, and there were life guards, and enough seats for everyone, and of course we ran into our friends- because we always do. i called my sister, because we're on the same network and it's free even though she lives across the country. we went to sensations therafun- a special sensory 'gym' for kids like zoe and everyone else, and we connected with other families who have kids that don't like tags and vacuums. then i drove to my friends house, and our kids played, then watched a tevo-ed happy, educational cartoon on noggin, while we sat outside and drank cold white wine on her porch and laughed and didn't even appreciate how easy and nice life is. i got a moquito bite- but with no risk of malaria. zoe was super well regulated because she just finished a few weeks with learning on the log- a summer program for kids like her- one of many programs, that become available only after you have enough food to feed your country, and medical care that keeps most children alive past age 5.
STOP. that is not my life right now.
am i enough for you?
do you trust me?
i will give you joy- to the fullest.
you don't need to compartmentalize- you need to take baby steps.
you need to take- today. to take this hour. to just go to that one meeting with her teacher. that is all.
you don't need to extrapolate your fear into regret of where you are. don't let this be about road conditions and unlit supermarkets.
let this just be what it is, where it is, right now.
breathe.
"now to Him, who is able to do exceedingly abundantly above all that we ask or think.."
i need exceedingly.
i need abundantly.
i need above all.
that is a lot of promise.
then i remembered the last 40 years. i remembered especially the last 13 years. i remembered darker days, and months, and seasons. i remembered that it's true. sometimes i can't even see- but i can still walk. by faith. empola, empola. slowly by slowly. just into today. just to that meeting. then back home- past cattle and red dirt and broken. i get to walk back into the steadying arms of mike; to jude who's very life screams of the truth in that promise; to bryn's toothless smile; to beautiful muzungu-karamajong rose- born on these dirty streets; and to that blossoming girl of almost 13, who despite making me feel like we are traversing mars- is true to her name- zoe- life to the fullest.
and that is a lot of promise too.
in a few hours i'm meeting with her teacher, because school starts next week, and well, we kind of need some sort of a plan. so i've "prepared" a list of topics to discuss. they are mostly in the form of questions. questions that i don't have an answer for.
- uniforms? yes? no? depends on the day? will my specially ordered "SOFT" clothes be okay if in school colors? because we have sensory issues. tags or seems or something too tight, or too loose, can send her to the moon- it can distract her (and therefore everyone else)- it can unravel her.
- homework? i know there is homework in 6th grade. but please don't torture me!! won't 6 hours of school be enough? but what about fitting in to the class? perception? participation? do we just do less of it?
-scheduled breaks? we are talking the attention span of a goldfish. will breaks help? will they cause more distraction in the breaking and re-entering?
-'engine helpers' ? she likes to fiddle, to hold small toys in her hands. this helps her feel less anxious. but what if she starts talking to junior asparagus? or what if she throws him in frustration because she didn't get the answer right?
- tests? oh dear. what happens there? is she timed? does she get help?
as we were making this list- i began to panic. i began to think that we are CRAZY. that this plan is DOOMED. that we are set up for DISASTER. i began to feel sick for everyone involved- zoe, her teacher, her classmates, me. and then i began to do what i always do after i panic- i began to grapple for control- to put up armor to protect us - to make plan b and c and d. but. we live in uganda where options are severely limited. so then i did the most logical and helpful next step- i opened the flood gates of fear and regret. what were we thinking! moving here? during teenage years? with zoe, a neuro-atypical kid? where are our supports? where is barbara mcclure? and social group? and her psychiatrist? and her sensory gym? and my mom?
suddenly life in africa began to look a lot dirtier, grimier, smellier, and eternally frustrating. on the drive in, the traffic appalled me, the trash piles revolted me, the cow walking at me in traffic really annoyed me- the potholes, the diesel fumes, the broken chin strap on the boda driver- all of it screamed of disrepair, and lack, and hopelessness.
i don't like to wallow. i don't like to look at life that way. so i moved on to compartmentalization. leave the zoe box for a while, leave the messy africa box, go to your work life box- open up that one- remember your purpose, your mission. i had been called by 'reach out' clinic today asking what my plans were, i'm due for a meeting with 'action for the needy' and we go to luweero for mobile clinic in a few weeks, i need to find some land to get farming, i need to sign up for the medical boards re-certification exam.
but then i remembered that compartmentalizing your life with a special needs child is (like everything else) - different. the work box, depends on the zoe box, because zoe touches everything. there is no 'arriving', no guarantees, no non-pull-able rugs. and. this. is. hard. it's hard hard.
so i closed my eyes and indulged the wallow for a minute. in my mind i sat in my leather seated pilot with the steering wheel on the normal side of the car and listened to the functional car stereo. i drove down smooth roads, and i took myself to starbucks and ordered a hot, to-go latte and organic horizon vanilla milk for the kids from my car window- just because i could. then i drove with the windows down, because the cars have intact exhaust systems, and smelled fresh air. there wasn't even any traffic, so i drove to wholefoods. oh. my. word. they had gluten-dairy-free everything!! they had normally priced peanut butter and nutella, and the lights were on in the store so i could see! they weren't out of milk! they had free samples! and it was air-conditioned. then we went to the emory pool, where there was no broken glass at the bottom of the deep end, and there were life guards, and enough seats for everyone, and of course we ran into our friends- because we always do. i called my sister, because we're on the same network and it's free even though she lives across the country. we went to sensations therafun- a special sensory 'gym' for kids like zoe and everyone else, and we connected with other families who have kids that don't like tags and vacuums. then i drove to my friends house, and our kids played, then watched a tevo-ed happy, educational cartoon on noggin, while we sat outside and drank cold white wine on her porch and laughed and didn't even appreciate how easy and nice life is. i got a moquito bite- but with no risk of malaria. zoe was super well regulated because she just finished a few weeks with learning on the log- a summer program for kids like her- one of many programs, that become available only after you have enough food to feed your country, and medical care that keeps most children alive past age 5.
STOP. that is not my life right now.
am i enough for you?
do you trust me?
i will give you joy- to the fullest.
you don't need to compartmentalize- you need to take baby steps.
you need to take- today. to take this hour. to just go to that one meeting with her teacher. that is all.
you don't need to extrapolate your fear into regret of where you are. don't let this be about road conditions and unlit supermarkets.
let this just be what it is, where it is, right now.
breathe.
"now to Him, who is able to do exceedingly abundantly above all that we ask or think.."
i need exceedingly.
i need abundantly.
i need above all.
that is a lot of promise.
then i remembered the last 40 years. i remembered especially the last 13 years. i remembered darker days, and months, and seasons. i remembered that it's true. sometimes i can't even see- but i can still walk. by faith. empola, empola. slowly by slowly. just into today. just to that meeting. then back home- past cattle and red dirt and broken. i get to walk back into the steadying arms of mike; to jude who's very life screams of the truth in that promise; to bryn's toothless smile; to beautiful muzungu-karamajong rose- born on these dirty streets; and to that blossoming girl of almost 13, who despite making me feel like we are traversing mars- is true to her name- zoe- life to the fullest.
and that is a lot of promise too.
1 comment:
I'm praying for you.
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