pleased as punch

today was rosie's first day of "school" and let's just say she was pleased as punch.  last week when ambrosoli started and the other three were settling in- she was jealous- she so badly wanted to be in the pack- it hurt my heart a little.  but our funds were too short for her to go to international school this semester, so she is going to "school" at the campus daycare.  i think as long as she is getting out of the house to be with a group of other kids, she is happy. 

today she was up with everyone, waiting by the door. she looked so big and happy and ready. it was adorable.  and that little pink thing in her hair? that is the tiniest pigtail i've ever made. but again, pleased as punch.

with the big kids off and my littlest one now at school too, i felt newness breathe into me, and it was delicious.  it's a newness that i'm beginning to embrace but it requires courage. 

"courage to change the things i can...."

it's easy to bury that mustard seed of faith in the palm of my hand and grip it with all my might as i anxiously await things to fall apart.  as i sit, tightly wound, and prepare for the worst.  as i allow my greatest fears of what could happen keep me immobilized.  "what if i start something, and then zoe can't handle school?"  "what if i commit, and then have to back down?"  it's scarey.  it's risky. it could go terribly wrong.  yes.  all true.  but.

in life, we are invited to step out in faith, not to hide in fear.  we are asked to be bold, to trust, to take a chance.  i was walking down from monkey hill the other day, thinking about what to do next with my days with all kids going to school, and there is such great need medically in uganda.  i was trying to be reasonable, to be thoughtful, to consider the possibilities.  then i heard it: plant the seed. make your move.  put your time where your words are.  step out in faith.

when the Israelites stood before the open red sea, parted for them to cross, they had to step out into the  mire. God moved the water, but couldn't cross it for them.  they needed to walk on their trembling legs across that sandy path.  imagine it. water piled up on each side, something they never expected, something very scarey and new, a situation rampant with the potential for disaster. they walked and they kept on walking.  if it were me, i'd have been running. fast.

i don't think God cares if we are running through the bottom of the red seas's of our life, or stopping to meditate in the middle- as long as we enter in- as long as we trust- and get muddy.  goodness comes with the combination of the open sea and the walking.  it comes with an invitation for zoe to attend school, and my ability to let my girl go, and to let myself go.  it comes with a willingness to open my hands and to plant my little mustard seed of faith.

so i'm breathing into this- i'm holding my arms open in a yoga pose - reaching out for stillness and embracing a new season.  maybe i'll be pleased as punch.




 

plink plank plunk

i just had a moment.  one of those achingly bittersweet moments.  when you feel your heart and it hurts a little bit, but feels warm and swollen too.  that twinge of beautiful agony- that ache that comes sometimes from loving someone so deeply that you feel their life in your life.

we had returned from the second day of school and it had been a hard day.  zoe was in her adapted tagless, seamless school uniform, wearing pigtails, glasses on, shoulder up, running through the kitchen to go find her neighborhood friends.

it was the pigtails. and watching the back of her head, her bare neck- revealing her elevated left shoulder. my mind played back all the times i've watched her running away.  watched her through the years as her white blonde pigtails have darkened, watched her gait steady slightly, watched and wondered and worried and prayed.

i love this girl. so. much.  this zoe. all of her.  the almost 13 years of her.  the challenges she never asked for.

today when  i picked her up, unlike yesterday her teacher said she had a hard time- at line up, in math, and french and pe- but the afternoon was better.  zoe seemed okay.

part of me didn't care, part of me expected that, part of me was crushed, part of me was annoyed that someone tried to test her math skills on the second day, part of me was scared about what direction we may be going. 

but as she dashed through the kitchen in her typical zoe form- i felt all those years like a giant ball in my throat and mostly what i felt was proud. because even if the morning was hard, she still invited almost everyone we passed on the way out of school, to her birthday party.  because she wasn't in bits.  because i know she can multiply even if she wasn't willing to count for her teacher today.  because a new school, being the only new kid in the class, in a class of 22 typical kids, who have all had french before, is a lot- with out being evaluated in math.  because we've come so far.  because cricket is really hard when you haven't played before. because even if she didn't try in math, she is trying in life.

and that is what matters.  trying in some form.  trying to navigate a much more complex world than i have to navigate. it will come slowly by slowly. she is not broken- she is whole- she is love.

as she dashed by me in the kitchen, i felt it all- our past, this day, where we've been, where we are going, all the unknown of it - but the known parts too - "zoe can i have a hug?"
"no mom!" she said smiling. "i want to go play!"
"oh come on, please?"
"okay fine! one."

i held her tight for a moment. her hair now at my chin level, her glasses still pressing awkwardly into my chest.  this girl has come so far. mustard seed faith. mountains will move.

plink plank plunk

writing out the bones

sometimes i feel very very small.  sometimes it's small in a good way- like when you stand on a mountain or at the edge of the ocean.  and sometimes it's small in a not so good way, like when i look at the statistics associated with this blog.  the number of "hits", the number of "followers".  it's especially bad if i look at other peoples numbers, or hear of other peoples success stories or publications, or book deals, blog awards, and tv appearances. then i shrink down to that tiny place, that 'why bother' place.  that feeling of 'who cares', and 'other people say it better (obviously)'. and then i become pretty sure that all this writing is doing is taking time away from other more important things- like making better dinners, or teaching people without a clue, to play 'clue', or taking care of more sick people.

but i have realized that if i don't come here and write- i will go crazy.  that if i don't put "it"down on paper (whatever "it" is)  i won't be able to cook, or play, or doctor.  i've also come to see that it's not just the writing it down that matters, it's pushing that orange button at the bottom of this page- "publish post".

so here i am.

the other day i'd written a very personal post about rose and our family and my process.  because of the topic and the choice of time in writing (namely during the afternoon, at home, with the 4 kids, while also making dinner)- it had taken me about 5 hours to finally finish.  i decided to read it to mike because i was having computer trouble and couldn't preview what i'd written.  he told me that it was too personal- out of his comfort zone- that he'd rather i don't publish it.

this was fine in theory.  i mean, he's allowed.  it's his life too.  there are times when our comfort zones are different, and his discomfort should trump my comfort. but in the course of discussion, he said something that gave me pause.   he asked me who i was writing for?

"me.  i'm writing for myself." i said quickly.

"well, you've already written it. you've processed what you needed to process, so why do you feel the need to push "publish"?

hun?

but it was a good question.  who am i writing for really? why do i want to push that orange tab? why do i care if people are reading this or not?

i'm not fishing for compliments, nor am i wrestling with low self-esteem, but honestly, will never be momastery or grady doc, or whatever, or rage against the minivan.  i am not a mommy blogger or a doctor blogger, or a feel good hip cool crafty photographer blogger, or an adoption blogger, or even a missionary blogger.  my lack of those titles, is so typical of me.  i'm just small and often confused with many sides.  i'm just struggling through my life, dealing with some common and some less common challenges.  i'm someone who seems to need to learn the same things over and over again. and i happen to love to write.

but.


as annie dillard says:
"This writing that you do, that so thrills you, that so rocks and exhilarates you, as if you were dancing next to the band, is barely audible to anyone else.”


i think its these things that thrill and rock and exhilarate, that we feel shy or comparative in, that we are meant to do.  we are compelled, we feel alive and real. 

i have years of journals.  i have written down much of my life- for me only. now, it is different. here, it is different.  i write for myself- but also- for community- for connection- for expression- for unity.  i write to remember- and share- and learn.  it began that day three years ago when zoe ate 3 earthworms- "just 'cuz".  when i felt alone with her and our challenges, when i felt like i was the only one living life with my underwear showing. all. the. time. most of what i read about having children with special needs, made me feel like a horrible person.  everyone else seemed to embrace the best in their child only, to see the blessings with out the struggle, everyone else seemed evolved, everyone else thought it was going to holland instead of italy- where i felt having zoe was like going to mars. so when i started writing here- i decided to be honest- even when it was painful, even if it bothered family members who felt family life shouldn't be exposed, even if i outed myself as the truly broken individual that i am.  the one who starts the day with 'help!' and ends it with 'i'm sorry.'  the one who spends a lot of time crawling to the cross- leaning on everlasting arms, and trying to be still.

and something magical happened.  really.  as i wrote it out- and shared it- i began to breath.  something about pushing that orange button, something about sharing it- the mess of it, and the beauty- helped me to feel more real and honest and okay.

my answer to mike was true.  i do write for myself, but putting it out there is part of it. i want other people to know they are not alone- whether their child is eating earthworms or not.  whether they live in snellville or africa.  whether they drive a minivan or don't have a car; or work outside the home or not; whether they are a doctor, or take care of people in other ways (because we all do that); whether they believe in a God who loves them, or not.

i want people to know they are loved, life is hard- and that's okay- because it's also so beautiful. some days we get it, some days we don't, but we try, we get up and do it again, we grow and learn and lean and hold and begin to let go- to be still, who ever we are, where ever we are, or were, or are going.

thanks for reading, for helping me not feel alone.

lovey (or the tea field process continued)

in february, when i was in kenya i had one of those life moments. those times that stand out- with out the aid of pictures or words- because the moment itself was big enough and important enough to be remembered.  it was the moment when i thanked God for giving me zoe - all of her - sticky thoughts and learning differences and all.  i felt thankful in a real and true way- a new way - a way that i hadn't even figured out was important before.  i used to thank God for zoe, but, could He now transform her into normal.  it was more of a conditional thanks.

in those long quiet walks in the tea fields- when i asked God to show up and walk with me - when i asked to be given clarity in my work and our life in africa- i got a lot of wind and rustling leaves and then i got this- an awareness of how truly thankful i am that zoe- as she is- is my daughter.  i didn't realize until i'd said it out loud, that it was life changing.  that it was a beginning- that it was  necessary for my growth in all areas - that it was about trust most of all.  did i trust that God is good despite suffering?  did i trust that the small part of my life, and the world that i can see- is only a small part?

when i was a girl, to the great disappointment of my parents, i didn't like to read.  at. all.  and what i did read was kind of weird- i read books about kids with special needs.  the one that stands out is lovey by mary maccraken.  it was a true story about a teacher and the 4 special needs children she taught.  but she did more than teach them- she loved them, she brought them out of themselves, she gave them a safe place- she made a space for them to bloom.  and they bloomed. i was moved by this- entranced by this- fascinated- somewhere inside me was a deep sense that i needed to pay attention.

today we tried a new church because the one we go to is very loud and overwhelming for zoe.  i know new things are hard for her, but it meets at the boys school, so i figured it wouldn't be totally new, and zoe and i had accidentally met the pastor of this church in entebbe, another point of connection.  unfortunately it had been temporarily relocated because of construction, but the pastor recognized her, it was small, the singing was soft, and the sunday school class was manageable. off the kids went.

half way into the service zoe came in, quietly.  she sat down and explained not as quietly that they were doing a crossword puzzle and she couldn't do it and felt badly.  it was understandable.  i rubbed her arm and asked if she could wait until we finished praying and we could talk about it.

'no mom- i want to back to class.'
'oh you think you can? you want to?'
'yup'

and off she went again.
i felt nothing but a sweetness, and a thanks.
i thought about kenya- about my moment of awakening- about knowing it was a beginning, a peeling of layers that i'd build around me in seasons when trust was hard to come by and i was busy protecting myself.

the speaker today had talked about the challenge of understanding God's allowance of suffering in our lives. but also how we only see a small portion of a great big picture; a peak over the edge, we can't fully get the 30,000 foot view, at least not all the time.  trust, in the midst of our limited scope, is a choice. but a defining choice. 

i thought about my childhood reading. i thought about lovey. and i realized that somewhere inside of me is a deep desire to wholly love and care for zoe; to understand her, to reach her, to know her, to be patient with her, to appreciate her differences, to be a part of her growth, and let her be a part of mine.  somehow i was meant to do this.  i was in fact made for this.  i am, with grace, able to do this.

so what has been blocking my access? 

i think it's once again, my grubby little paws.  it's my want to have control over my life, to own the better plan, to be angry about not having it easy, to ignore, 'who has known the mind of the Lord?'
i think it's in my forgetting that, 'from him and through him and to him are all things'.

the accessibility began in those tea fields, and it continues.  it began with my saying 'thank you' with no 'buts'. it was the beginning of letting go, of shedding the covers of protection i'd been wearing. it was the first time i understood, i mean really understood the words of Jesus - 'come to me you who are weary and i will give you rest. for my yoke is easy and my burden is light '.  at least i understood that his way is easier, his burden is lighter than mine.  because in saying that 'thank you' and meaning it, it was the first time since about 4 years ago when zoe fell to bits, that i'd felt free.

today my girl walked in quietly- knowing where to go for help- even though she only needed a little. today, i was given the grace to feel nothing but sweet love for that girl, and the God who gave her to me, who holds us both in a great embrace, promising such beauty and peace and freedom, when we can shed the layers and trust.
today the tea field process continues for me and my own lovey.

reframe it with out a frame

it's only tuesday but if feels like it could be friday. i think it's just one of those timeless weeks.  those weeks when schedule and dates and time is replaced by the ticking of fans, the awareness of our tires on the road, the feeling of the cool air on our arms - when again, the cards have been shuffled and our emotional response to life has surpassed our intellectual response to it.  when our right brain takes over as our left brain is befuddled.  yes- that is what this week is.

there has been exposure.  goodbyes, with out getting to say goodbye. processing. which always leads to more processing- because once the left brain is allowed to rest- lots of things move to the front- and our senses enliven and we begin to feel more, to pay attention differently, to pause, to breath, to remember.

sometimes in these timeless times i indulge the sadness.

when i arrived home on saturday after that long day , i told zoe that my friend had died. she gave me a big hug and told me that i should go and watch some sad parts of movies to "feel better".  i think she meant to "feel", to access my emotions- so then i might feel better.  i get this and i'm glad she does now too.  and i did this sort of- not by watching sad movies, but by reading other peoples lives and connecting over things that are similar and hard- so that the timelessness and the exposure feel less alone.

whenever i indulge and process, i inevitably end up re-grieving some of the past harder seasons in life- and often land on feeling very sorry for myself for the hardness of the never-passing-ness of a season.  life with a child with special needs.

in my indulgence and processing i read two beautiful stories about children and down syndrome. the first was about a woman who had been told during her pregnancy that her son had down syndrome and when he was born- he did not.  the second story was about a woman who had been expecting a "normal" daughter, and when the baby was born, she had down syndrome.  both stories were about the shock of not having what your were expecting.  not getting what you'd planned for, and the disappointment that comes with that- the grieving of not having "normal" and the grieving of not having the child with the syndrome.  it was fascinating to read them and see the similarities in the process given the extreme opposite of the outcome.  but they were both grieving the loss of what they'd expected and prepared for.  and both were able to embrace their new babies and love them as they are.

talking about loss and grief is complicated- because while it's universal- it's also competitive.  it can unite us or divide us. we can feel totally alone, misunderstood, that we are holding the shortest end of the stick, that everyone else has it better- or we can feel unworthy of pity, guilty for grieving because it could always be worse, someone else is really suffering- so who are we to complain?  mostly we vacillate between the two or worse, feel both types of negative feelings at the same time.

i say that because- i've sometimes been envious of people who have children with down syndrome. that was in a whisper voice- as i don't want to upset or offend or confuse- let me try to explain.

in having and raising and teaching and living with zoe, i've so often longed for clarity.  i've longed for a diagnostic code, a chromosome that i could blame things on (so i could stop blaming myself). i've wished for an understanding of how, and what to do now, and a large body of literature and studies and known-ness about what could or would or should happen with my child.  i've longed for a large support network- a community of kids who share at least some known similarities.  i've longed for a way to put edges on our life together, a way to package it- to make some sense of it for myself and everyone else.

i've even longed for the sweetness, and joy and caring that the children i've known who have down syndrome exude. and i've longed for life with out the anxiety and depression and obsessiveness that can come with having only 2 copies of chromosome 21- but some non-genetic, non-imagable brain differences that make navigating and managing life, very difficult.  i've even longed for a visual cue that she is different. a way that people would know ahead of time- to tread lightly- to be gentle.  but mostly so that when i look at her, i would remember that she is different and special and that it will take her longer and that more is required of me.  because i look at her and i forget.  and i hate that i forget because my forgetting hurts her.

i've longed for it to stop unfolding so i can catch up with processing it.  i've wished that i could stop being duped.  that i could have avoided the years of denial- the seasons when my mind worked so hard to convince my heart that things were normal and fine.  that i hadn't missed those years when my heart could have been working on teaching my mind that there is nothing so great about 'normal', and what is normal anyway- and that neither have anything to do with being "fine". 

being "fine" is about the response of both of the women in those other stories- being fine is what i strive for and need to create space for in my days and my minutes.  being fine is in thanking God for life as it is.  thanking God for the child you've been given no matter how many chromosomes it has, no matter what it's brain looks like.

being "fine" comes with thanking God for the mystery of zoe- for the constant unknownness- for the opportunity to live an unexpected life.  it comes with being thankful for the gift of not being bound by a frame.

instead of being "fine"- we parents of kids with special needs- whether they wear their special on the outside or not,  have volumes written about them or not, are neatly categorized or not- we have the chance to be way more than fine.  if we can let ourselves, if we can sit with the mystery, we get growth and depth and a perspective that is transformational.  we get real real.  we get the raw, bare, truth of what it means to be human- in all the child-like mess of it- the simple beauty and the ugly of it.  we get adventure and change.  we get 'new york super fudge chunk' instead of vanilla.  we get a rainbow.

and our kids?  they do too.  if we can remember that maybe we won the lottery even though we never bought a ticket.  if we can live in the LOVE that we have for them, instead of the whys and what ifs, and buts.

after i finished reading those stories on line, zoe came in from brushing her teeth.

"mom can we watch 'mirror, mirror'?"

 it was 9 pm and i was tired, but.

"yes! lets watch a movie! that is a great idea."

i looked at her as we sat on the couch together, ready to pop i loved her so much. i answered all her questions about the confusing parts of the movie. and i rubbed her arm as she tried hard to resist flapping her hands during the exciting parts.

it was a moment when i remembered.  when i was so thankful for this whack, flavorful adventure, and that this was the girl on it with me.