mustard seed

that little thing is a mustard seed

Jesus said that faith the size of a mustard seed, can move a mountain.  have you seen a mustard seed?  they are tiny, and mountains, well, they are huge.  sometimes i think that Jesus said that, and matthew wrote it down, just for me.

i used to think that faith was like patience- either you have or you don't- either you spend your life working on it, or you've been blessed. i have not been given the gift of patience- i struggle with it daily, okay hourly- but faith, i've always thought i was pretty solid on that. but. i'm finding that faith is more like love. love is something that everyone has for someone or something - in varying degrees, for varying situations, and people and seasons.  faith is like this- well for me.  maybe there are people who have it more universally- but for me, it changes in strength and size and amplitude with each different circumstance.

with zoe- it's only the size of a mustard seed- on a good day. 

school starts in two days.  i can feel it shrinking.  this morning poor mike got back from his run and was faced with my fine coffee ground size faith.

"mike she is never going to make it in school. we are CRAZY. we ARE crazy. WE are crazy." 

i recounted her educational history- her IEPs- her work- her attention- the issues- the recommendations- the challenges at special schools where the zoe's of the world are their raison d'etre. i worried that i hadn't done enough prep work with her, or the school.  that everybody's expectations wouldn't be met.  that everyone would be disappointed.  (maybe mostly me).  because it feels like the more times something fails, the greater the let down- there is more riding on the hope of it working.  

i know all of this banter is pointless.  she's going to school in two days even if that means all of my greatest fears coming true- desk hiding, ear covering, screaming out in frustration or the sight of a vacuum, speaking in whatever foreign language seems appropriate based on the way someone looks to her, whistling through her day, flapping and force laughing at a funny joke, announcing in class that she's having a hard time because she has a "non--ver-bal--learn-ing-dis-ord-er" or because she's "turning 13 soon and is growing... you know...." while pointing to her chest. 

oh. dear.

"i mean i do have faith.  it's there.  somewhere."  i said finally, but i'm not sure it brought much relief to either of us.

this does feel like a mountain. one i've been looking at for a long time.  one i've been climbing up, trying to understand: why it's so high, and bald in some places and forest like in others. why it's so steep, why there are desert parts even.  why i don't have the right equipment, why no one told me i needed crampons and an ice pick.

but what is "working" anyway? what does "making it" look like?  and is this even about her? is it perhaps about me letting her go? releasing her to the one who told me i only need a tiny speck of faith for big things to happen, for the world to shake, for change, for the impossible to become possible.

so i grabbed my mustard seed and my girl and we headed out to face the music- to have a day together and to go see her teacher and her classroom.  it was delicious.  our mountain hasn't moved- but i felt  a tremble. 

we started at the salon, because i had an appointment. zoe was her charming self and they offered to wash and style her hair for fun (and for free). 

"yeah right!" i thought. she has sensory issues. she hates getting her hair washed and brushed and dried. 
but no- she wanted to- and. she. was. fine.

and then she was thrilled. so thrilled that she danced around the salon to the club music, looking in every  mirror she passed. then we went for our lunch date. sushi. like old times. she tried to speak japanese to the tagalog speaking sushi chef, thankfully the japanese branch of the UN were dinning there too so zoe was able to both salute and impress them with her greetings.

girls day out

 

then we stopped by school, she saw her new classroom, and her teacher, and the desks and book nook, stuffed frog, and other fun items.  she saw her cubby, and asked some questions. 

there was no magic and it wasn't a 'perfect day'- there was a quick shriek at the hair salon when she couldn't get something to work, some mild frustration as she attempted to use chopsticks, and some ear covering when she heard a drill at school. but it was delicious because of the words quick, mild and some.  it was delicious because this day reminded me that Jesus never tells us how the mountain will be moved or who is doing the moving, or when it will be moved.  maybe the mountain moving process matches our faith.  for me, with zoe, at this place in life, it might be moved one pinch of dirt at a time.

part of my mustard seed faith is knowing this, and being okay with this, and trusting that what i have faith about -will happen.  our mountain will move- but most likely by a means that i never dreamed of, in a time period that i will find frustrating, with help that i never thought would come my way.

i have faith that zoe will be happy and not afraid (most of the time).  i have faith that zoe will know and love God and other people.  i have faith that zoe will love herself as. she. is.  i have faith that zoe  will someday leave my house, for her house.  these are the things that i want for her.  but i have no idea what any of that looks like.  all i know is that it probably looks nothing like my happy, my not afraid, my leaving, or my house- and that is okay.

mustard tree

so i will plant my small mustard seed.  and this giant tree will grow.  and the mountain will move- somehow, someday - and i will smile and get my hands dirty and wait to be surprised.

traversing mars

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.

what it was, and is and will be

how quickly we can go back to places we've been.  how amazing the mind is. 

i'll be honest.  school starts in 3 weeks and deep inside me lies that beast named anxiety with one eye open.  he's pretending to be asleep, but i know he's faking.  see, it's been three years since zoe's been in a classroom.  it's been three years of my own struggles to teach her, help her without helping her, and watch and hope and wait and pray and cross my fingers and take steps forward and then a leap backwards.  it's been our own little dance- and it's been hard and good and fun and filled and i'm glad and ready for it to end- but it's been our own.

in three weeks that changes.  in three weeks it goes back to public- to her life lived out loud.  it goes back to all the possibilities, but the two that always scream the loudest are success and ....failure. i've gotten much more used to failure.  i've learned to not hold my breath, to lower the expectations, to stand on firm and rug-less grounds.  but just because those protective measures are in place- doesn't mean the beast is gone or even asleep.

i'm beginning to notice that my days with her are numbered.  she turns 13 soon.  i'm beginning to notice that our days now are lived with the awareness of this- and the encroaching school start date.

last week she did a two day tye-dye workshop.  the second day when i went to pick her up- she was sitting on a tarp, holding her wadded and tied, yet undyed t-shirts and was monopolizing an adult helper who was listening to her rant about how upset she was that she didn't know the game they were playing a few minutes before.  as soon as she saw me- it blossomed- it bloomed- it expanded into full exaggerated drama. 

'mom this is just the way i am!'
'i'll never get over this!'
'i'll just have to live alone and be mean and awful always!'

trying my best to be calm - to be 'that' mom - that super understanding, zen, mom of a special kid- mom; i said,  "zoe, it's not that big of a deal! it sounds like you just didn't like one game, that 's okay! now lets go get your shirts done!"

but while those words were coming out of my mouth, and while i was wondering how can she possibly be so dramatic,  the giant hairy anxiety beast had already opened his other eye and was blinking at me and maybe even shaking his head- like he knew it all along.  she is never going to make it at that school, he said. see, you are crazy for thinking it will work, he said.  maybe you should move- somewhere that has a special school.  maybe you'd better get ready to home school again, he said.

inside i felt the same level of drama that zoe did- the very same overwhelm. her drama was specific- i hated that game because it was new and i felt uncomfortable- so basically i'm going to have a miserable life! 

to me, her drama looked absurd. but i had the same reaction to her! she hated the game, she's upset, she can't handle social situations, she can't learn in a group, this feels awful and uncomfortable, she's never going to make it in school, we are going to have a miserable life!

when i got home i realized that we both have ptsd.  we both suffer from the trauma we've experienced surrounding her learning disabilities and school and her social struggles. we are both scared of the vacuum cleaners that we will run into- we are both scared of her reaction to the sounds and the sensations- we both fear her fear of feeling out of control- we both feel out of control. 

it helped to see it for what it was- for what it is- for what it will be.
all of it, and only it.


it will be moments of new games that cause stress and frustration and sadness- and then she'll move on.  it will be first days when uniforms are scratchy and sitting down in a chair with out asking questions constantly, will feel too much.  there will be melt downs and children snickering and the world will feel like it's about to tip right over.

but it won't. 

the dance will continue- our dance- her dance.  there will be new music and new partners and the non-static newness will be scary and try as i may, i'll accidentally hold my breath and sometimes pass out.  but i'll get up.  so will zoe. 

i will try to remember that small moments can just be small, even when they feel huge- they don't need to mean everything.  i will prepare for jumps forward and days that are so far backward i won't believe it.  i will see her grow and learn and i will too.  the future is unknown, maybe more unknown for her, but that is known. 

we will enter this new season with our heads held high- with faith and thanks.  we will walk slowly, tread lightly, breathe steadily and deeply, and we will laugh and know that we're in it together.

building the house i'm in

i spend a lot of time pondering what exactly i am supposed to be doing in life, while it's screaming all around me.  sitting right in front of me. following me, tugging on my sleeve. 

the questioning and pondering is especially loud being here as a missionary, and whenever zoe is struggling.  competing priorities- all important things.  it's hard to decipher if my struggle with work/home balance, with doctoring/ mommying balance is generated out of desire or guilt.  am i running toward something or away from something ?


here i am.  here i have been called. as many things.  as a doctor in a place with a lot of sickness and need, and as a mother in a place with a lot of challenge and need.  and primarily as a follower of God, a seeker of truth, one struggling to love better, to both try harder and surrender more, to do the will of Him who has given me so much.

oh but i forget that last part often.  i live battering around how to do those first two things- how much time to devote to each- how to find that place of deep satisfaction.  but that place is only found in the last part.  deep peace is only found in the following, the trying, and the surrendering to the one who is love.

i like to think my way out.  i like to convince myself that i am needed here as a doctor- that i'm indebted to those who have sent me here- that i need results-good reports on all the people that i'm helping- the programs that i've started- the sustainable ways i've brought change.

i want to do all those things.  they are fun and important and rewarded.  they build resumes, they help raise funds, they sound good when talked about at dinner parties.


'give careful thought to your ways.  go up to the mountains and bring down timber and build the house, so that i may take pleasure in it and be honored.  you expected much, but see, it turned out to be little. what you brought home, i blew away.  why? because of my house, which remains a ruin, while each of you is busy with his own house.' haggai

it's time again, to look at the house i was given.  to do some of those things that aren't always fun or rewarded but are so important.  they don't build careers, or fund raise and they don't sound great at a party.  


right in front of me, there is great need.  right in my own house right now, there it is.  will i meet it?  will i try to clear my plate of the sexy, ngo-ish, public healthy, medicine clinicy- things that i came to africa to do, and first try to meet the needs at home?  or will i live in a place of indecision, of fight, of turmoil?  will i be able to embrace and treasure the hard things i've been given or will i run from them because i have bigger things to do?


about a month ago i was pretty sure that we'd arrived well as close to arriving as we might ever get.
i was living in a place of thanksgiving and joy and awe at how well a confusing mixed up life was beginning to look. i was relaxing into another year of even better- zoe going to school.  of the end of a long hard season and the start of a new glorious one. 


this week i was quickly reminded that zoe's life is a roller coaster and always will be.  i had forgotten.  i had enjoyed the forgetting.  it felt really good. it looked really pretty. it looked like i could return to the land of normal- i could run toward the world of ex-pat, missionary, doctor-in-africa.  finally. 


last night when we got home from our trip to the pool, she got so mad that mike had helped her into the car- back an hour ago when we got in the car, that she kicked the back window out of the car.  it shattered all over the driveway.  she was so stuck on the idea of being helped- it had sat and stewed in her mind for the entire trip- that she lay down in the back seat and let it all out through her feet.  a lot of things were shattered in those moments- things that might take longer to fix than a window.


here i am.  here is where i'd be no matter where i was.  here with a girl who is so beautiful, who has come so far, but who is also so challenged and take so much time and energy, and will take even more over the next 7 teenage years. 

i know what comes first.  i know i need to build my house- build up my girl- be in my life- the here and now of it- loving it- trying- surrendering to the hard, honestly unwanted seasons, crawling toward the cross, begging for help, crying when i need to cry and remembering to laugh, to laugh a lot, and to be thankful always- even with shattered glass and expectations, because no one was cut, no one was bleeding.  we've been here before and we've been better and we've been worse and we will get there again.

dear zoe

"oh zoe my zoe, if you weren't so much you, i would never know me;
oh zoe my zoe, i love you so much may you always be free."

that was the song i've sung to you for a long time. since you were small, when things seemed simpler- when you were still asleep.

right now you are outside feeding the turtles.  you are all revved up, laughing loudly, fake sneezing loudly, probably flapping.  i don't know what is funny- but i know the pattern.  you've swung from rage to hysterical- both indicators that you 'engine' is too high.

you just finished telling me that you hate me.  that i'm a betrayer, the worst mother ever, that you want to kick me and bite me, that you want to throw the books you see beside you. this is because i cliped your toenails.  you can't see the extreme- you only feel it.

you will be 13 this summer and i'm tired.  we've been walking this road together for a long time.  the last 3 years have felt the weight of twice the first 9 years.  what i thought would be hard- has been okay.  what i never expected, has been almost impossibly hard.

since your friend moved, that switch has been flicked- that button pushed- that has sent you back to that place we were.   you spend a lot of time- stuck.  your reactions to small things are absurdly big.  you make mount everest out of molehills.

as you get older, it gets scarier.  i worry about how you will handle life?  school? will you ever live independently? will i ever be able to really relax? to live in a place with out having the rug pulled out from under me again and again?

maybe the trick is to not have a rug.  to stand firmly on our concrete floors and feel the cool and hardness.  to not attempt to make things warm and comfortable- to learn to live with these smooth red floors. the concrete of our life. maybe there will be less chance of us falling.  so falling might hurt more- but we'll be used to it- we won't expect anything else. 

tomorrow you are going to spend a day at the school you'll go to next year.  yes, i'll admit it, i'm mildly terrified- perhaps you are too.  maybe that is why you're having a hard day.  maybe you'll surprise me, maybe i won't have to watch you fall to bits- (as my memory knaws at me). 

for now, i'll roll up the rugs.  i'll stand firm on the floor. i'll hold your hand.

then one day, probably many years down the road, when our feet are worn, when we don't remember the softness of wool, we'll be able to lay them down again- together.

warning: raw real life straight ahead

this.is.hard.
period.
it just is. 

i'm referring to life, but more specifically, life with zoe. 

last night mike and i had our date night meeting good friends for dinner.  on the drive in i asked him, "did you have any idea life as a grown up was going to be this hard?"

"no. i honestly didn't."

we've had a great season with zoe since coming to uganda, really.  she has truly seemed to blossom here, to grow and build friendships and be somewhat more self-aware. and for that we are so, so thankful because we moved here with mild trepidation. we asked a lot of "what if's".  what if she decompensates?  what if she is lonely and she misses her grandparents, her friends, her routine, her normal? what if we can't ever find her a good educational environment?  what if we are crazy to bring a child with special needs out of her comfort zone and into africa?  what if we've miss heard our 'calling'? 

but things have been good and we felt affirmation in her growth and her happiness. 
along time ago we learned to never say "phew!"  to never think 'we've arrived', to know that good seasons don't mean no more bad seasons, that nothing is a sure thing. 

transitions are hard for everybody- but they are extra hard for zoe.  so is loss, so is sadness.  sadness isn't an emotion she likes, it's the one she avoids like the plague, it's one that she would chose last in the line up. since her 'bff' has moved away, she's been trying (desperately) to figure out what this feeling is, and how on earth she is supposed to deal with it- and we've all been suffering the consequences of this swinging pendulum of response to her sorrow over ellie leaving.

when we grieve something- we grieve everything.  we relive all our old losses, we re-feel them, and that is especially hard if you didn't allow yourself to feel them in the first place.  so yesterday and today i've been listening- really listening and trying feebly to assist her with processing her sadness. 

it's all wrapped up together.  missing ellie, missing the US, her dog, her old house, lily, elise, all the way down to the older kids who played with her when she was in kindergarten. she's also sad about herself.  sad that she has a harder time processing things, that she over reacts, that she has 'sticky thoughts' that she can't control them, and that makes her afraid.

so she sat on the couch today, while mike took the other kids to the pool, and explained her great big ball of emotions and how they grow in her and overwhelm her and that is why she 'couldn't handle going to the pool today'. 

i'm trying to think of how to explain the deep and conflicted emotions i felt as i sat with her.  basically i had that ball of them growing and overwhelming me too.  i love her so much; i'm so sad for her, that her brain struggles so much to process everything; i'm so tired of it all, of spending so much time on one person, on one child, of having to miss out of a fun afternoon because of her inability to deal; i'm angry and resentful of her, of her inability to think of other people, and i feel so badly for my other kids, for the black hole of time suck that she is, for the amount of energy that she demands; i am terrified of this part of our future- of her not being able to handle school and what that will do to her self-esteem as well as what it will mean for my life; and i feel so terribly guilty for feeling these things- because i love her so much.

she explained things well.  i tried to listen with a poker face of 'i'm fine, no really', until she said she was done, and wanted to eat.  i went to the kitchen, made her a sandwich, went back to the kitchen and got really mad at God and let him know it.  i leaned on the dryer and bawled like a baby, but silently.  and inside i shouted i think pretty loudly,

'why? no really, why?  why everything? why has my life as an adult been so hard? why did zoe have to be born with all these challenges?  why did i have to go through all that pain with jude?  why did bryn need to be in the icu for the first week of his life? why did you bring us here to uganda? why are you allowing her to struggle so much?  why did i become a doctor if i was never going to really work again because i'd have a child with such special and unique needs?  and why do i have a child with such constant need anyway?  why did you ask us to bring rose into our family to add to the chaos?' 


and then i left the questioning- because i wasn't getting any answers.

'hey, news flash, i don't like this! at. all!  i didn't want this, this is too hard, i'm tired, can't you cut me a break?'

i know, i heard.

'yet this i call to mind and therefore i have hope- because of the Lords unfailing love, i am not consumed' He reminded me of my mantra.

but i feel consumed! i do! and scared!


'i have not given you a spirit of fear, but of power and love and a sound mind.' He quoted again.

i repeated the above questioning and commenting as i began to make a salad for dinner- because what else was i going to do? life goes on.

'do you trust me?' He spoke in my heart.

there it was. that was the question.  the question we'd honestly been discussing with our children this very morning in home church- trusting God when it doesn't make sense to trust Him- trusting God when really bad things happen.

"yes".  i conceded. "i do trust you". and i meant it.
 
that was it.  that was what i got.  i was the one being asked the question. so i finished the salad and my sound mind kicked in. i reflected on the laundry list of my woes- and then at their outcomes, the ones that had outcomes, and they were all good. i haven't been consumed- but blessed. jude is a thriving seven year old boy- bryn did fine after that one week in the nicu-  i can't see the future, but i do trust God. and i'm curious and excited to watch it unfold. because most of the bible is full of crazy, full of hard times- full of 'why did they, or why didn't they'- yet God remains faithful to those who put their trust in him.

so i'm going to trust despite what this afternoon felt like.  i'm going to trust that somewhere in this great big mess that life can seem - goodness comes; that zoe is all she is because that is exactly who she is supposed to be- even if i don't know why; that rose has come into our lives for a very special reason- even if we have no clear idea of what that will look like; that being an adult is this hard because life is this hard everywhere for everyone and no one ever said it wouldn't be (except for the TV shows we grew up with :).

we are here to learn, to seek, to grow; zoe and i, and everyone else too.

endurance

i've been thinking about endurance.  about how hard it is- how long it takes-how never ending it can seem. and how much i don't like it.

endurance- bearing with hardship, pushing on, continuing existance- even when it hurts like heck.

i think these days many of us have become intolerant of endurance. 
we much prefer avoidance, or if unavoidable then overcoming- but the idea of enduring- we don't like it, in fact we hate it.  i'm in that group.  when i find myself sitting with something really tough or painful, the last thing i want to do is endure it. i want to fix it.  so i begin to problem solve, make lists,  do research,  investigate and then implement. 

it's only after failing, after many attempts to go back to the drawing board and try the other avenues and then failing again, after getting really mad, and obsessing and perseverating, and usually after several other unrelated categories in my life have broken- their fragments added to the heap i'm dealing with- only then do i stop.  only then do i take pause and think about endurance. only then do i consider that maybe 'the something' i'm trying so desperately (and yes that is an appropriate adverb) to overcome, is something to be endured.  maybe this is something that will not go away.  maybe it's not to be overcome. maybe it just is and i might never know why. so maybe my energy needs to be spent differently. instead of fighting it, learning to exist with it- problem solving about how to press on- building community and support to sustain my endurance.

today, after writing most of this post, i was acutely reminded of what requires tremendous endurance- zoe.  i wanted to wring her neck.  i wanted to not hear her voice, to not see her, to not have to spend another minute discussing her getting 'another chance' about whatever. 

raising children requires endurance.  raising children with special needs- who demand a lot of time and attention- who technically qualify as at least 2 children- that requires even more endurance. 

this evening, while trying to get out of the house to meet some visitors from the US, i was followed around by jude who wanted to calculate the exact amount of time that his parents would be out- bryn who wanted more food- rose who wants to tell me the names of everything because she's so excited to know more english- and zoe who was behaving in a way that required time and attention- doing things that she knew would make the time revolve around her. 

comparatively it wasn't that bad. but.  after a full day with her- giving her lots of time and attention- spent working on helping her regulate- hiking with her- playing- being incredibly patient with her multiple times- and basically feeling like i deserved a medal for my excellent behavior and parenting skills- i was just done.  i was so tired of having every interaction need so much support.  i was mad that she was taking time away from the other kids again. that she was the squeaky wheel, again.

surprisingly i didn't explode on the outside (for which i do deserve snaps) but on the inside i was furious.  because while she didn't know it, my patience tank was on empty.  there was nothing left. i was out of gas.

when mike and i got in the car- i kind of exploded- or vented loudly with a few *&%^&$ exclamations about how 'done' i was.  and as we bumped along the road and sat in a bunch of traffic, i remembered what i'd been writing about. endurance.

oh yeah, that.

that is exactly what i need to work on.  how to endure. how to live with this. how to even bloom in this. because she will always be the squeaky wheel- the child who takes more time- that is not going away.

i have several friends who are dealing with things that are so very hard that any of my trials, my bad zoe moments,  seem tiny and really insignificant.  they are living with things i wouldn't want to endure.  they are enduring cancers, some that are cured and some that aren't, and amputations, or medical problems that are unsolved and causing tremendous pain and stress, or children that demand much more time and energy than mine, or poverty. 

there is nothing wrong with trying to fix anything, and everything.  when it's fixable. but somethings aren't.

so i pray into this.  that i will learn to endure and churn my hardships into some sort of beauty.  that my energy will be learning how to endure, leaning on my God, sometimes crawling to the cross, and sometimes singing hallelujah.

where we are and where we will be

sometimes we go to dark places so we can see light differently. so we can notice that we need very little to see.  that a small candle goes very far.  that things are even prettier in that shadowy flickering light.  but none of us want to be in darkness. 

sometimes in dark spots we are in places to hear things differently too.  we listen more when sight is diminished.  we pay attention in a new way.  and somehow in these times, other people respond to their still small voices and bless us with a flame or a word.

yesterday my friend said that she wished i could just allow myself to let go of working for a while.  now that we have rose, and as we settle everyone in to school in the fall, and zoe being zoe.  she wanted to encourage me to be in this season, to accept it as a mothering place and not obsess about when i can get back to 'reach out' clinic and when i should start teaching, and how i can get the 'action for  the needy' clinic up and going in luweero. 


i heard her. 

kind of. 

but that is my stress reliever.  figuring out my work life stuff, distracts me for the day to day challenges of still having to guide zoe through washing her hair, or helping people to the potty. it gives me a mental 'out' - it puts an end in sight.



then i had last night with zoe and when i was debriefing on the phone with mike, i realized that i was making some big assumptions again, i was beginning to expand my expectations.  i was putting too many eggs in my ambrosoli basket.  i could see that part of why i was so irritated with zoe and her outburst during bedtime last night, was because it was threatening my plans.  it was waving that flag "don't forget i have challenges!"  it was calling me to remember that learning differences don't go away when people stop homeschooling.  that her getting into school for next year is not any sort of a guarantee that she'll stay in school next year. i could see that i was mentally beginning to go about my life as if suddenly things were 'normal'.  but they are not normal and they won't ever be normal- at least not what i thought normal would be.


in the conversation i heard myself blurt out,  "but what if next year, i'm back at work full-time and she can't handle school?  what if the rug gets pulled out from under us again?  how am i supposed to get on with my life, with zoe?"


oops.


but my life is with zoe.  intricately woven with zoe- on the days that i like it, and the days when i don't.  this fact will not change no matter what i think or try or where school happens.  this is my life. it will be my life probably forever.


and in that dark space, i thought about what my friend said about being in this season.  and i realized that this season is much longer than having a 2 or 3 year old again.  this season is having a child with special needs.  in fact this isn't just a season- this is my new normal.


today i had daydreams about being back on the wards of moffit long hospital in san francisco.  the weird thing was they were good day dreams.  i have never missed residency, but i was thinking fondly about early morning rounds and reading ekgs and making plans, and discussing the case with the team, and speaking with the patient and family.  i was remembering and longing for feeling in control of my life- or someone elses life- or really anything- because life with zoe can feel so out of my control.


i pulled out the book that i'd read years ago- dana buchman's 'a special education'.  it's a memoir about a self-proclaimed type A, new york fashion designer with a daughter who has zoe-esque learning differences.  it was time to re-read it. again.  it was time to remember that other people have been here and survived, even thrived.  that when her daughter was 9 and 10, 11, and 12 dana buchman had similar fears and doubts and moments of utter inability to understand the mind of her child.


then i opened an email from my dad with an attached short article by joni eareckson tada- a quadriplegic and of the big advocates for people and families of people with special needs.  he wrote that it might be helpful as i raise zoe.  he listened to that still small voice.  he took the time to send it.  he was right. 


joni wrote about how God uses people who are weak, or suffering, or afflicted, to accomplish great things- to move mountains- to be leaders.  the bible is full of examples- the old and new testaments.  God picks people who stutter to give speeches, shepherds to become kings, an old man and woman to birth a nation.  Jesus picks people in the low brow professions to be in his posse, people with shady pasts to hang out with him.  but we see through the glass dimly.  we don't see that most people actually don't have it completely together.  that we are all broken.  that God turns broken into even better than new. 

i have not idea what zoe will do, or really what i, with my challenges, will do, or when i will do them.  we are part of a giant puzzle trying to do our small piece to make things fit together.  we get so mad when they don't fit.  sometimes we need to wait.  sometimes longer than we wanted. sometimes we feel like we are stuck in that movie 'ground hog day'- reliving the same frustrations again, and again, but we're not.  we are slowly learning, growing, moving, being shaped and pushed into a better version- into more whole than before.  even zoe.  even me.


so i sit with those two bits of light given by a friend and a father. 
'be in your life.'
'know that God loves broken- uses broken- enables the differently-abled."


words of hope.  light in darkness.
accept it. embrace your life.
hold it- because it is full.  life is full.  and there is goodness.

is this really where we are in life?

i can't wait.  my mom is coming to visit in one month.  we are so excited that we are fixing up the once garage, now home school and table saw storage room, for her.

when she comes she likes to know what to bring and she likes to know in advance.  she's ready for "the list"- she's ready to start hunting for the random items that we are either unable to get here, or cost way too much here. so i was on line looking for some things for zoe- namely a swimsuit with attached skirt, and longer shorts- when i decided to look for some things for me- just to look.

i was on ebay, wondering why none of the shoes in my search looked very good, why most of them looked like what my grandmother wore, when i realized that i was on page four, of 64 pages  of my ebay search for, and i quote, "comfortable womens sandals". 

oh dear.

is that where we are in life? did i really search for comfortable womens sandals?

no.

i refuse.

i changed the search to 'sexy womens sandals'. and i got 64 pages of  neck-breaking stilettos. and i realized that while much cuter, i just can't walk in the 4.5 inch heels, and i'd be taller than mike.

so i changed the search again, to 'comfortable sexy womens sandals'.

yep.  i got the "we're sorry, but there are no matches to that search".  zero.  zilch. no such thing.  of course. it all sort of sums up being a woman. the dichotomy between comfort and sexy.

well i wish that was the only 'is this really where we are in life?' moment.  but it was the minor one.

mike is out of town and it was my first night with four kids alone.  let me pause to say that i effectively have five kids, as zoe counts for at least two children.  things were going fine- dinner was done and i actually cooked it (although cereal was a very tempting option)-but zoe was being overly silly, annoying, and difficult.  after dinner i could tell we were headed for trouble so i took her to her room and asked her about 'her engine', where she thought it was.
"high!" she said.
"yes.  and how can i tell that it is high?"
"by my smile? and my laughing?"
"yes.  and by your inability to focus and your constant moving."

then i had a brilliant idea.  it was really fool proof. i put her in the bath, washed her hair for her, laid out her pajamas and her toothbrush and a book and lit some candles in case the power went out.  this would be perfect!  she's become relaxed and calm and i can read to the other three kids and put them to bed.  all i asked was that she be quiet and not call to me.

so it began and after about 30 minutes i was almost done.  rose was almost asleep and i was feeling very pleased with myself and my magnificent plan.  i was envisioning picking out a good teen dance movie and snuggling in bed with zoe and watching it.  i was envisioning some good mother daughter time, staying up later and bonding.  just as rose has nodded off, my daydream was disrupted by a very loud explicative "GGGRRRRHHHHHH!!!!" from the bathroom, which translates to, "i'm trying to do something and failing and i'm sooooo frustrated that everyone needs to know it!"

i felt all the little hairs on my arms stand on end.  rosie rolled over, i held my breath.  please DON'T do that again. but i knew it was coming.
"GGGRRRHHHHHHHH!!!OHHHH!!!!"

that was it. i knew where we were headed so i hedged my bets and sneaked out of the room.  she was still in the bath, there was  a lot of water on the floor and she was mad because she was trying to do some silly hairstyle and couldn't get her hair to do what she wanted.  i wanted to kill her.  no.  really.
i was so mad that she wasn't able to do the ONE thing i asked- not yell.  i was so mad about what her yelling was about.  i was so mad that she'd ruined my daydream of watching 'honey' dance her way out of the hood, together.

after some not-so-good words and facial expressions, i left her to get out of the bath and i retreated to the living room to attempt to calm myself down, as my engine was on super high.

is this really where we are in life?

can my 12 year old not manage a simple, set up routine task?  i'd done all the hard stuff- how hard could it be? she almost woke up the baby, is there any executive function at all?  will she ever be aware of other people as much as she is aware of her self?  oopps.  is she even aware of herself? perhaps that is the problem.

i knew i was over reacting, but i couldn't tell how much.  so i made some milk tea and ate a lot of chocolate chips and peanut butter and thought about it.  then i did what i always do, i went and apologized for loosing it and tried to see if she could understand at all where i was coming from.  she said she could, i'm not sure i believe her, but it was nice to hear.

just then mike called.  and he listened for a long time as i said a lot of not-so-good words and told him i almost killed his oldest child, and that the worst part was that it wasn't even that bad.  i mean we've come SO FAR!

that is when he reminded me: it's the baggage.  we can't see things for what they are sometimes because they're so magnified by their baggage.  each little episode carries a ton of history and fear about the future.  maybe now more than ever because she's going to school next year.

he reminded me that we will get to a place where she won't shout "GGGRRRHHH" and we will watch teen dance movies- but instead of 12 it might be at 15.  it just takes longer.

he also said, "i know." because he does.
"it's hard." because it really is.
and "i love you." because he does. and i really needed to hear that, because yelling at special challenged children can make you feel pretty unlovable.

zoe forgave me for over reacting and throwing a towel at her (which p.s. landed in the tub instead- when it was full of water).  i forgave her for yelling and nearly waking up the other three kids.

this is where we are in life.  the GGGRRRHHH's and the frustration.  the creeping out of the rooms of sleeping children to deal with other children.  the continual attempt to accept where we are and what our life is, learning to say, 'i'm sorry' again, and again.  remembering it's the baggage, that its a long bumpy road.

i guess it's no wonder i'm looking for comfortable shoes. 

the chickens have hatched

if you had told me 5 years ago when we were leaving san francisco- that our move to atlanta would be temporary- that  the special education schools for zoe wouldn't actually work out- that her anxiety would peak and she'd need to be home schooled, that i'd be barely working to do this, that we would then sell our home, leave our jobs and move to africa as missionaries, i would have had a hard time believing it.  if 3 years ago, you'd have told me that this child, who i struggled to teach even with much support, would thrive in africa, make good friends and be accepted at a typical school- i would have laughed. out. loud. 

but this is how God works.  this is how he rolls.  he sits back and says, "watch this!" 

just like my dream when i was pregnant with jude- he holds us when we cry- he tells us we have no idea what we can handle-he says, "i know" when we are screaming about how much we hate our current situation.  "i know" in a loving way- in a "i'm feeling it with you" way- "you are not alone."

when we moved to uganda, we basically assumed that we'd be homeschooling zoe for at least as long as we were here.  period.  we'd done some research- there weren't any special education schools in uganda and getting into a typical school was not on the table. 

when the boys started at their international elementary school zoe was jealous.  she said she wanted to go to school- i think it was her kind way of saying - i'm getting too old to have you guys as my teachers. as the school year progressed it became clear to me that i was done.  that i had reached my limit of whatever patience God had granted me to teach her- that this season was ending.  i felt guilty about this until i realized that it was a reasonable thing to want to just be her mom- and to do that really well-because no one else can fill this role, but there are other people who can teach her.  thankfully, it soon became apparent that the reason that i was done, was because she was done too.  and that is most important. 

so we prayed and prayed and trusted, and looked frantically for a tutor, which we thankfully found.  zoe was still begging to go to the boys school on friday for their weekly assembly- she wanted to see her friends - some of the girls she'd met at school functions, and the teachers, and other parents.  she was thirsty for more social interaction.  and my heart panged a few times, i just wanted semi-normal.

if any of you have kids who are differently-abled, kids who aren't the norm, who struggle with things that most people in the world don't have to struggle with- you know those heart pangs.  you want so desperately for you child to feel the deep joy of relationships that you've felt- you want your child to not have to experience constant failure and rejection from their peers.  you know that 'normal' isn't an option- you've become okay with that, but you want peace, smiles, growth, for both of you.  basically you would cut off both your own arms and probably your legs- for your child to be happy- in whatever form that happy is.  yes.  i would give my limbs for her - as i know most of you would.

then i heard that the boys school was starting a special education class.  they had found a teacher- and were going to be enrolling for the next year.  wow- i thought- that is GREAT!  and i was so proud that this school of my boys was embarking on a tough but needed adventure.  it didn't occur to me that zoe could go.  but i know she loves working with children like herself- that she is gifted at connecting with other differently-abled kids.  i mentioned that maybe zoe could come in once a week to be a 'helper' for the new class.  we are trying to build on her strengths- to encourage growth in the area's that she excels in.

about a month ago- the same day we found out that rose could come be with us, the school said they might be able to take zoe.  wow. what? wow.  i hadn't asked for that.  i hadn't even prayed for that- in fact all i was saying was 'thanks for the tutor for next year' and 'help- no really help me until she comes!"  zoe was invited to come for an interview.  so we gathered her massive packet of diagnostic and IEP papers, thankfully scanned and emailed by her last school in atlanta, and headed to meet with the school.  she would need to take some tests, math, reading, and writing.   oh dear. 

so i lowered the expectations even further.  i figured now this will be it.  prepare yourself, i thought, prepare them.  i told them to expect that she might leave the math paper blank or instead of writing draw characters from a preschool show in the margins.  but she did fine- not stellar- but fine.

yesterday i got the call. my heart sank when i heard the head teacher on the phone.  i was expecting an email so i figured she called to deliver the bad news, to let me down gently.  but. 

they were happy to take her- it was a unanimous decision- she had a space in the year six class- with some support from their special education teachers- with an IEP- with agreed upon expectations- with a lot of communication.   people want to make this work- people want her to be there- people are willing to take a risk. wow. wow.

it's hard to describe the feeling of pure joy and excitement i had.  it's hard to describe what this feels like when your life was turned upside down for a few years. when something you really didn't imagine possible, happens.  it was beautiful.  it is beautiful.

we'll have to see how it goes. 
i've learned there are no guarantees- that the floor falls out from beneath us often- to expect the unexpected- to be flexible or you'll break.  i've learned that we need plan b, and c, and usually d.  but hiding in all our lives- in all those paths from a- d and in between- there is such surprise and beauty waiting.  there is always something to learn, to experience, to grow us, to hold on to.  so we'll try- we'll be thankful and hopeful and eager and nervous and trusting and still. 

yes we will try to be still and know that he is God- who loves to surprise us.

listening to the rain

it was such a good rainy day.

last night it started, that soft sprinkling sound that blends into a giant "hush" like the ocean- the lulling of nature- calling us to be still, to stay longer in bed, to not be in such a rush, to be held by the world.

and sometimes we need that to feel small and covered again.

i should have known when zoe began fake crying like a baby the morning we went to pick up rose- that there would be some regression.  change is hard for her- even change that she begged for- like a little sister.  i did a good job of lowering the expectations that first day and night and actually that whole week, but tomorrow it will be three weeks and as usual, accidentally before my very eyes, those expectations ratcheted themselves back up too soon. 

the problem with having some trauma in your life, is that as soon as you experience any sensation related to that trauma- you kind of panic.  it can be the smell of anesthesia, the color of a wall, or the stickiness of the thought or the increase in distractability. 

this week zoe is definitely having more sticky thoughts- more trouble regulating, and a shorter fuse. i feel like saying, "oh come on! get over it! it's been three weeks- so rose cries sometimes...so she takes your toys... so she gets attention.  let's move on!" but i know better.  i know it takes time and that it's hard.  i also know that how i feel about her reactions aren't just about her- they are about me.

they sends me to places i don't want to go. remind me of places i've been and have feared returning to. and again, as i have always done, i ruminate over decisions that have already been made. i second guess everything that could have possibly affected her.  should i not have had her during medical school with all that stress exposure? should i have fought the doctor about inducing her a month early for supposed IUGR? should we not have moved? should we not have changed her school? should we not have come to the picnic? was the addition of rose too much for her? did we just rock a finally steadying boat?

but life can't be lived that way.  life can't revolve around one child, and family decisions shouldn't be made with only one person in mind. that's not good for anybody.  and i can't keep questioning.  i can't let the bumps on the path roll me over.  i can't assume that a rough week is a permanent set back.  i can't keep fearing the return- because we never really return to the same trauma.  even if my worst fear came true, if she began school and couldn't do it, if we were back to homeschooling- it wouldn't be the same as three years ago- there has been evolution and progress in all of us.

what i need to do is trust and love and live in that trust and love.  i need to show her more love- even when she's struggling to be kind.  i need to show her that i trust her process- that i can handle a bumpy ride- that i have more faith than fear- that she is ready for the scarey stuff like having a new sister and going back to school after a tough exit. i need to step back from our past challenges and embrace the progress and walk boldly with her into our future.

and i need to listen to the hush of the rain as she tells me to be still, and stop rushing things, to stay where i am and feel held- and small- and covered.

finding the 30,000 foot view, again

it's a quiet saturday morning.  life is still.  i'm looking back over this week- it was a good week. 

on thursday i escaped.  basically i realized that i needed a break, a time-out, a day with out zoe, a personal retreat. i had that feeling like the kite strings on my life were tangled. the mild chaos in my mind needed sorting.  i'd been on a long stretch of homeschooling because mike was at a conference the days that i usually go to work, and the 'fall out' was me feeling frayed and fried.

my usual response to this feeling is (unfortunately) very medical.  i diagnose the problem and i create a solutions list.  i'm not good at sitting with it.  i'm not great at rolling with it.  i want to clean up, tidy my life and 'keep the house clean'.

so on thursday i took myself into kampala with the goal of analyzing my life, identifying the problem areas and finding solutions.  i began at a coffee shop with a cup of african tea and made a 'retreat agenda' which covered topics great and small- from "zoe" to "home improvement".  then i moved on to a different place where i could sit on a couch for hours and write it all out- expand on the topics- go deep.

i started of course, with zoe.  one of the unfortunate things about children is that they are not static :).  you really never get to cruise control, to sit back and let the machine drive itself- and this is especially true for special needs kids.  and this is especially hard for parents who tend to perhaps over-analyze and be indecisive.  whenever i'm struggling with zoe, i tend to go back to square one.  here is how this has played out. 

when she was little, between 2-6 years old, after seeing multiple specialist with no clear diagnosis, i would alternate between thinking she was "normal" and i was crazy, or thinking she had some great need/ disability.  the times i thought she was mostly on track, were fantastic.  and the times when i began to wonder what was 'wrong' with her were awful, and in these times, i would run to the internet and for hours, attempt to diagnose her.  autism, aspergers, some random chromosomal anomaly, fetal alcohol syndrome (although i think i had one glass of wine during my pregnancy)-  i've forgotten the numerous other diagnosis i'd convince myself she had.  this behavior felt like a binge, like indulgence.  i would consume massive amounts of information in attempt to gain control over the crazy i felt with her, over the fears i had about our future.  the good that came from this was in my remembering that whatever differences she had she deserved gentleness, understanding, and compassion. but i so wish i could have spent that time and energy sitting on the floor with her, watching and listening to her, trusting her to God, enjoying the difference instead of trying to diagnose and fix it.


when she turned seven and had a 'formal' diagnosis of non-verbal learning disorder (in quotes because it's not recognized in code form as a diagnosis) i began to relax.  well, kind of, because my attempts at control, my response to the crazy, was converted into searching for the best way to help a person with nonverbal learning disorder.  and five years later, i'm still doing this.  i still haven't really learned to sit, and watch and listen and trust. 

so on thursday morning i began to write out my goals for zoe, academic, personal, relational, life skills, all of it.  i began to write out her strengths - the things we should support and encourage and develop. i wrote out the problems, what we were missing with homeschooling- because in the back of my mind, my solution was to get her back to school. to get her back to a place of 'normal', to be 'done' with this season, to 'return'.  but as i wrote and thought about it- i came to see that most of my goals for her are being met, or can be met with home schooling, and most of her strengths can be encouraged and developed with homeschooling, and probably what's missing can be added with out starting her at a non-special ed international school at age 13.

what i came to realize is that the problem isn't with zoe, it's with me. i'm conflicted about being her teacher, i've lost my passion for it, i want to just be her mom.  so i began to wonder why?  she's doing better, she's more engaged, she's 'easier' than she's been for the past two years, she has less sticky thoughts, does better with copy work, and math, and comprehension, so why now? 

and the clarity came.  because my back-up is gone.  my rescue boats aren't here.  the side-line support is absent.  in atlanta if she or i were having a bad day, if a break was needed, i had choices.  my mom would take her.  barbara mcclure would take her.  we could go to erin's house.  we could go to sensations therafun special ed gymnasium.  there were options, a way out, a life line- because parenting a child with special needs is full time.  we also had a scheduled support structure.  social group, brain balance, piano lessons, learning on the log, math tutoring, ama time - all with people who understood her, loved her, and really helped her.  but they also helped me- not just in providing a break, but with their compassion, their ability to enter into the suffering and the challenge. 

and that is the difference.  the 30,000 foot view of what's really going on.  and it will not be solved by sticking her in school next year.  i mean that might happen- someday.  that might be something she will want to do, or try- sometime.  but it should be for her, not for me.

so this retreat was good and needed.  my focus shifted, i corrected the course, and i began to think into ways we could build our back up, our network, our support.  we will find them here, things that will help both of us- that will grow both of us. they will look different, but they are here.  the same God that has provided so far, will continue to provide.  and i will try to sit on the floors of life with her.  watch and listen and play.  trust us both to God, sit with it, and enjoy the craziness of the ride.  i never liked cruise control anyway, i even prefer to drive stick:).

the whisper of the world around me

today we did what i would call 'communal home church'.  basically the expat kids came together at someones house to have a little kids sunday school as a change of pace from the large ugandan service/ and sunday school that we usually go to.  i was excited.  i figured, here it will be good.  it will be quieter, organized, smaller, more manageable especially for the one child who is so easily overwhelmed.  so i sat with zoe in a comfortable large leather chair ready to see how this new atmosphere would answer our sunday school problems.  but.  it didn't work that way.

why i'm continually surprised by this?

she interrupted.  she wanted to tell the teacher random things about how to observe butterflies.  she wanted to interject at every point when audience participation was sought, but there were 10 other kids. she wanted to already know the answers to every question asked.  she became mad.  she told me she needed to leave, as she fiddled with her 'engine helper' and i stroked her arm to help her calm.  and this went on for the entire hour.

i was not calm.  i was everything else.  i didn't want to stroke her arm, i wanted to pinch her really hard because it felt like someone was pinching me inside. i was sad and angry and a little embarrassed, and hopeless, and scared. 

we were learning about david. the great man of the old testament, the man after Gods own heart.  the man who was a shepherd, and musician, and poet.  the man who killed the giant with his slingshot, who became king.  the man who messed up a lot, who slept with other peoples wives, and even killed their husbands, a man who knew he was wrong, who was deeply sorry, who asked for forgiveness and was forgiven by the God he loved passionately.  a man who felt sad and  mad and ashamed and scared. 

so i muttered a little prayer of 'help' in my heart.  help me because i'm scared.  i'm so scared.  i'm scared that this is her life life.  that these obsessive, sticky thoughts will prevent her from living happily, from ever learning anything, from have healthy relationships, from growing, from connecting.  i began having visions of a full grown zoe who can't leave her house, which is filthy and filled with disney toys and littlest petshop pets, and probably several animals that have been rescued but not treated for fleas. because i'm scared that she will be one of those people in the world who live on the fringe, that talk to themselves and are avoided, that are so overwhelmed by life that they shut down. and i'm so scared that i just don't have the tools to help her process the overwhelm, that instead i become eaten by it too. 

it's hard when you see parts of your brokenness through the eyes of other people.  it's hard when you're emotional underwear is sticking out for all to see. it's hard when you feel guilty about your fears, that they are symbols of giving up, of a lack of faith in her.  so i try to step back.  to not just see what's in front of me, but place it in the big context.  when you analyze data you don't fall to bits over one data point, you wait, you trust that when all the points are gathered, the trends will be clear and there will be some outliers.  but that requires emotional maturity which in these moments, i gravely lack.  in these moments i only see a cat-lady who can't balance her check book, or get the temperature right for her shower, or peel a carrot, or unscrew a juice lid. and i feel the need to panic. 

after it was over, and i was walking down the banana plant path, i had another little talk with God, but less desperate and more annoyed. 
'really God?  i thought we were kind of done with these days? these sticky thoughts?  these intrusive thoughts that disrupted her life, my life, and the entire class.'  that was it.  i didn't have much more.  

and there was nothing.  just the sun hot and shinning down, just the soft wiggle of the tree branches in the wind, just the voice of the birds, just the white butterflies leading us home.  God in the stillness.  God in the cave with david.  God in the big leather chair with me and zoe.  God big enough to hear my 'help' and my annoyance. God in the whisper of the world around me. yet, that is somehow enough. 

why somedays i want to poke my eye out

i had started this post in my head last night as i lay in bed thinking about my zoe and the challenges that we seem to continually face.  it's not that they are massive, terrible, or earth shattering, it's that they are slow and gnawing, like chinese water torture.

is it the number of times that i've heard myself say "stop eating with your fingers!!" and "what part of stop playing dolls and put the doll stuff way, do you not understand? i've asked you five times in the past hour." while her younger brothers use utensils and might need 1 or 2 prompts to clean up.

or is it the fact that she'll get completely worked up about a 'stranger' at my friends house- the stranger who happens to be another mother with her kids present- but will happily and fearlessly spend an hour talking to a random guy sitting alone in the coffee shop who happens to looks like hitler?

and thus my desire to poke out my own eyeball in frustration.

so i remind  myself of  'the rule of 300'.  that it takes 300 times longer to teach her something than a neurotypical child- in other words that there is hope, eventually.  and i remember that she has a gift of reaching out to people.  and i say a prayer that no one will harm her when i'm not around to protect her, or act as a filter, before she reaches the 300th time and finally understands who really is a stranger, maybe even a strange,stranger. 

but we are entering that tricky age- we are at 'tween' and heading toward 'teen'.  so there is all the goofy that goes along with that- the gangly, awkward, pimply, hormone-y, stuck somewhere between child and adult- stuff that we all fondly recall.  but it's overlaid with a wide differential between the areas of maturity and those of great immaturity that kids with learning differences live with. tricky because there are now more variables, more volition, a greater desire to reach emotional independence- which seems to point and laugh at the other areas of continued dependence.  and instead of this adorable little blonde girl- flapping away while watching clifford and understandably using her fingers because her tiny hands can't hold a spoon, i'm dealing with all the struggle but she's wearing miss-matching clothes and has underarm hair.

so i was thinking that in addition to lowering expectations this new year, i also need to have a better sense of humor.  i was having visions of talking in that calm, sweet, sing-songy voice and saying to zoe in full sincerity, "oh honey! did you forget to use your fork again?" and not letting it get to me. at. all.

because i want to be that person- or at least not the yelling, ranting, nut-ball that i can become when i've told her 5 times to use the fork! i want to just laugh about it and let it go, and hope that when we get to 300, she'll listen the first two times she's asked to do something, or better yet- not have to be asked at all.

yes i want to get to that place of zen.  i want to go all in with love, and all out with annoyance.

because i need my eyeballs, both of them.

i'm sticking with you, 'cause i'm made out of glue

it's been a while since i've written about zoe. 

there was a time when i was so afraid of jinxing the goodness with her, that i was afraid to speak of it.
there can be fear in the naming of things.
in 'harry potter' the evil character is so feared that his name is not spoken, instead he is referred to as 'he who must not be named'.  for me zoe's shining moments, her good days were 'the stories that shall not be told' out of fear that they would magically go away.
somehow we believe that speaking it has power- either to empower the bad thing being spoken of, or in my case, to take away the good things.
but it's time for me to speak of the good, to trust it's not luck, but progress and mostly God sprinkly grace.
it's time.


















so this is a story of a girl who climbed a tree.  not just an ordinary girl.  a special girl.  a girl with visual spacial processing difficulty, a girl with vestibular challenges, basically a girl whose sensory system doesn't send her brain the right messages- so, much of life is scary or hard.  something gets lost in translation between her skin and her brain.  pain, vibration, awareness of her body in space (propioception) are perceived and delivered- but the volume for her is either turned way up, or turned way down. 
a girl who cried walking up a steep driveway a few years ago because she felt off balance.  a girl who can't go upside-down, who has never done the monkey bars, whose palms sweat profusely when she feels she might fall, when the surface is unstable, or narrow, or high off the ground.  and here is my girl. high up in a tree.

this day zoe's friend came to the door,
"we were climbing trees and zoe is stuck. can you come and help?"
so mike went.  sure enough- there she was way up the tree (the picture doesn't do it justice).  she had climbed up all by herself, with the encouragement of her friends, but getting down was looking tricky. it was getting dark and so mike helped guide her down- but she did it by herself.  initially she was upset by having had help to get down, but after a couple of minutes she was back to feeling proud about climbing the tree.

i know that doesn't sound super impressive.
so she's a kind of uncoordinated 12 year old who climbed a tree.  but.  you have no idea. 
(unless of course, you've read the first year of this blog, or you have a child with nonverbal learning disorder or aspergers or something like this. unless you belong to that club you never meant to sign up for- parents of kids who are different.)

zoe used to get stuck on things.  she had 'sticky thoughts' -  ideas that glued on and wouldn't let go- irrational beliefs that preoccupied her.  one of her favorites was 'getting help'.  she would ruminate, perseverate, and fall to bits over getting help, or anything she considered assistance.  perhaps the most annoying of all would be the crash and burn following my response to her asking for help.

"mom, have you seen my shoes? i can't find them anywhere!"
"yeah zoe, i saw them on the back porch."
"OHHHH!! why did you HELP me??  I HATE HELP!"foot stomping, dramatic body language.  "MOM i don't NEED HELP OKAY!  'oh, here they are'- DOHHH why did you TELL me!!!" throwing crocs off the porch down onto the back yard.
"but zoe, you asked me where they... oh never mind."
and i would break into that old velvet underground song "i'm sticking with you - 'cause i'm made out of glue"

this was my life for a long long time- this was her life for a long long time. every day, many times a day.  these sticky thoughts were like a giant vacuum sucking away our joy.

when we moved to africa, i began to do a lot more praying.  not just because the roads are practically a death sentence and malaria and other tropical illnesses abound, but mostly for other people who live on the other side of the world- for our senders, our supporters, who have made sacrifices for us to be here serving the people of uganda.  one day soon after we arrived, i began to pray specifically for zoe's sticky thoughts in a bold and clear way.
i didn't do the usual, 'help!' or 'please help us as we try to help zoe'.  i decided to pray with conviction, to plead with conviction: 'God, i know you can take away zoe's sticky thoughts completely, so i'm asking you to- okay, i'm begging.  i don't want help dealing with them, i want them gone. over. done with. please cure her of sticky thoughts, free her from the limitations of her own mind.'   and really, He has.

do i hear an amen?

as zoe likes to say, "those were hard times."

so her little blip back into the land of not wanting help getting down from the tree, was not that big of a deal,  it was only a blip and not falling apart. the turn-around time was a few minutes- not hours. and this is good.
sometimes i wonder if her brain doesn't 'visit' it, like an old memory- or if occasionally the wires get crossed for a second.

the other day, we were at a store and zoe saw a 'police set'.
"oh the boys would love that!" she said.
"you're right! do you want to get it and give it to them for Christmas?" i said.
"oh yes! what a great idea."
i was shocked.  that was it?
a year ago, my mere suggestion of something that she wanted to think of first, would have resulted in a meltdown. she would have fallen to bits, and probably so would i, only later when no one was looking.

the funny part is later that same day, she called from the back seat very calmly, "mom, i wish i'd thought of getting the boys those toys for Christmas."
and i started to laugh.
"what's so funny mom?"
"zoe, you know what?  when we were in the store and i made that suggestion, you told me it was a great idea and i was shocked and thrilled.  last year, you would have been so stuck on this- the afternoon would have been ruined for both of us and you wouldn't have let it go.  i actually thought all this in the check out line.  and now hours later, you are so calmly telling me you wish you'd thought of it first."
zoe began to laugh.
"oh! sorry! you're right, my bad!"

so there you have it.  my girl. climbing trees and getting stuck, but in the tree not her own head.  my girl able to let it go.  my girl being slowly freed from a brain full of sticky.  my girl able to laugh in reflection with me. 

and did you hear the part in the story about getting up the tree 'with the encouragement of her friends'? yes.  i said friends.  she has two really amazing and wonderful friends. girls that include her, put up with her idiosyncrasies, remind her gently, that she 'already told them that', cheer her on climbing up a tree, and actually genuinely like her.  did i mention i prayed for them too? i think it went something like this, "Okay God- can you just give her one good friend?  just one.  she's desperate.  i'm begging!"  and it's just like him to give her two- because that's the way He rolls.

and who would have thought all this was possible in the middle of deepest darkest africa?
away from therapy and psychiatrists and social groups and psychologists and PT/OT and special schools.  oh yeah- God did- because that's the way He rolls.  He likes surprises and tough odds, like parting the sea and turning water into wine, and providing friends for a girl who now likes to climb trees, in the middle of uganda.

close the door

today is that sad day when the Christmas tree comes down.  when we put things in a box that won't be opened until next year.  it's a day of endings.  even Christmas music doesn't sound right anymore- but i did listen to the messiah one last time- in that sort of painful way- like listening to the song you slow-danced to after you break up with someone. and i started thinking about closure.

the act or process of bringing an end to something. 

this has always been an important concept to me.  when i was growing up, even in 4th and 5th grade, after school on  the last day, i would climb a tree, sit alone and reflect on the year for a while.  i would pause and think about what i'd learned and how we were all growing up and that time was moving and nothing i could do would stop that.  i guess it's just in me.  so endings are hard and i feel nostalgia and melancholy and quiet.

that's where i am today. 
the sunny late afternoon of late december on the equator just doesn't feel right.   i need snow or cold or bare branches, a fire crackling, those things that help me close the year. i have seasonal jetlag.

so i did the best i could.  i went for a run- short and i wouldn't say sweet- but needed.  i organized shelves, and put away stockings and ornaments.  i baked gluten-free bread from scratch because someone sent xanthum gum.  i did laundry and thought about planting things in our yard.  i stripped beds and  settled disputes about the fair distribution of lego men and reminded zoe 100 times to complete her waking up routine. it rained for a while- a good hard rain- like a little gift of almost winter. 

we find ourselves in the mundane things.  who we really are, is who we are when we pick up our lives and make meals for our family and separate legos and remind kids to close the door for the 1,000,000th time. 

last summer in atlanta i felt like a broken record stuck on , "SHUT the door!!" because of the air-conditioning.   and here it's the same thing- but because of the bugs.  i think i should attach a tape recorder to the door  that is triggered when the door opens and just says it for me.  but these are the pieces of  life, and there is no closure- it just go on and on.  raising children is just like this.  you say things hundreds of times and suddenly they reach an age where they begin to shut the door. (and i bet it would be reached at the same time if i never said 'shut the door' again). 

raising a non-neurotypical kid is even more like this.  you say it, say it again, say it louder, and again, until you feel like you're being scrapped on a human size cheese grater. this week we were lamenting about how long the basic learning takes.  sometimes it helps to remember that some skills have been 'mastered' or at least greatly improved upon, but sometimes it doesn't help, sometimes it's looking your life square in the face and thinking about the cheese grater.  mike did some quick calculations based on her learning to effectively wash her own hair and figured out it took about 100 times longer to teach her than another kid.  granted that is possibly the mac-daddy of tasks for her.  it integrates, strength, motor planning, will, sensory issues, motivation, task completion, multiple ordered steps, and keeping arms above the head for a while which is hard with a malformed shoulder. but she's doing it- doing it independently, effectively and usually with out using the entire hot water tank. 

the evening is here, the monkeys are on the roof, the sky is pale and the trees have become black silhouettes.  the air is cool and feeling slightly more like december.   the house lights are on, a soft glow of home.
the day is ending.  i will hold this closure, and enjoy it and appreciate it.  i will let go of the long seasons i'm used to, and be thankful for the short ones of each day.  they're more my speed anyway, more manageable, more forgiving. what is in a moment? what is in a day?

candy, candy corn, candy canes, and syrup

it's cool and cloudy and the giant mpewere tree at my friends house has lost it's leaves. i'm listening to 'swingin' christmas,' the old good stuff.
and for the moment, it's beginning to feel like Christmas.

last night we watched Elf.  hysterical.  and it totally reminded us of our zoe.
will ferrel plays a human who was raised by santa's elves and returns to new york city to find his real father who is not a nice guy.  'buddy' the elf is pure and innocent and full of hope and love and kindness and simplicity.  he is so literal, always assuming the best of people; so full of goodness but misrepresenting himself right and left.

sometimes you turn around and life has happened.

that is how i feel these days looking at zoe. over the past 4 months here she's changed.  she's growing up.  she has become slightly less of a squeaky wheel needing constant attention, she has had a huge decrease in 'sticky thoughts', she seems less a victim of her own brain.  as usual, i relish this, i thank God for this, and as usual, i quickly forget where we were and increase my expectations.  this is hard.  i mean you can always find things to correct in your kids, but sometimes that needs a sabbath, sometimes you just need to praise them for what they're doing well and let it be.

but.

we knew growing up would be hard for zoe.  that it would be a long season of age appropriate hormones and the immaturity that comes with her type of learning disability and that combination would be tricky.  and it is.  she wants to wear make up, but has to be reminded to wear deodorant.  she talks about finding true love, but needs help finding her toothbrush. 

maybe hearing the growing up parts shines a brighter light on the parts that are behind. the contrast is greater.
i try to remind myself that we're on a different path.  that not being able to open the ketchup bottle doesn't negate the desire to be treated more like a 12 year old and less like a six year old. i need to remember that she is complex, even her parts that seem simple are complex.

she's begun to talk about 'liking boys' and while that is totally normal and age appropriate, she lacks the ability to know who to share this with, and when.  in her innocence, she shares her feelings, and i mean whatever feeling she my have at that moment, with whoever is around.  and this results in embarrassing the 'boy she likes' and making other children and adults uncomfortable.  which results in me hearing about it from several concerned adults, and mike and i talking to her again.

the hard part is we are dealing with a deficit in her understanding, and we are dealing with trying to teach her not just hard and fast rules, but how to grasp the subtleties, to not feel badly about her feelings as she matures, but how to not share them with everyone. often we do end up giving very firm boundaries, setting up hard and fast rules, while we work on the understanding part.

the hardest thing about having a child with autism spectrum issues is trying to teach the things that most people figure out on there own, trying to teach things that normally don't need to be taught.  the 'gut' feelings.  how to hear what has been said with out words.  it's. so. hard.  and it takes so long, and we go over it, and over it, and over it.

i hope as she grows up we can help guide her with out stifling her, that we can teach her those things that seem unteachable,  that she won't lose the beauty of who she is as she finds her way in the world.