she gave me eyes

it's morning.  it's quiet and drippy after a crazy hard rain last night- all night.  i love that sound of rain pounding on a tin roof.  i think the rainy season is back- with cooler air and mud and the closest thing we get to the pensive feeling of autumn- at least in the mornings before the sun heats up. 

today zoe left for a school trip in eastern uganda. it's a two night get away at sipi falls.  she is so excited, and a little nervous. i am so excited for her.  in preparation, her teacher asked to meet with me briefly yesterday to go over dietary issues and medications. 

when people ask how zoe is doing in school this year- i usually say- "great! i think...."  and i think that because she is generally happy and enjoys school and wants to go every morning.  i think that because i haven't heard otherwise.  i haven't been called in about desk hiding or drama or distraction,  and for that i am so so thankful.  i am thankful for the absence of bad news- i am thankful that people know how to work with her and are willing to do so.  i am perfectly okay with not being in the educational loop on a daily basis- because ultimately i know zoe will be fine.  i know that zoe has her own path- that it is unique- and timed differently- with gaps and spaces and lots of color and texture.  i know zoe's years will be variable and filled with stepping forward and leaping backward and many side steps too, but that eventually, she will end up where she is meant to be.  i have learned this over the years with her- i have learned this because i have faith that God has a plan for her that is way better than anything i could orchestrate.

yesterday during that short meeting with her teacher- my hopes were affirmed.  zoe is doing great.  that means that she is participating enough, that she is learning enough, that she has made huge progress from where she was 6 months ago when she started at ambrosoli- said her teacher. is she different from her peers? yes.  does she learn differently and at a different speed? yes.  but.  she is learning and growing and maturing in typical classroom because the people who teach her are okay with her different.  because they trust that eventually she will be fine.  because they believe that the little moments will all balance out and they can step back and see ahead.  because they can take themselves out of the picture and make her successes and failures about her - not about them.

i needed to learn that too - especially when i was homeschooling her.  i became so enmeshed in her world and her life and her learning that i became lost and overwhelmed and terrified for both of us.  i needed to let her go.  i needed to pull back and be just her mother- that role of guiding and leading and picking up pieces and sticking them back together with out getting my own arms stuck in the glue.

yesterday during that short meeting with her teacher- my faith was affirmed. i heard and saw again, the goodness of God.  the faithfulness.  the fulfillment of promises- for provision- for non-abandonment- for live to the fullest.  wow. 

yesterday i was reminded again of zoe's strengths and her perseverance.  her ability to get up and be in very challenging days.  to return to the places that are hard over and over.  to face the social challenges of a 20+ kid typical classroom. to be the different one.  how easily i forget how hard her days must be and how gifted she is in managing them. wow.

the other day someone sent me a link to an article written by a woman who has a differently-abled son.  she included these wordsworth words about her son- and they resonate about my zoe.

 She gave me eyes, she gave me ears;
And humble care, and delicate fears;
A heart, the fountain of sweet tears;
And love, and thought, and joy. 
                        wordsworth 

and such joy!!

 

what zoe teaches me

somedays you wake up with a migraine and you say "no way.  not today" even though you want to desperately crawl back into bed.  somedays you swallow your pill and put on your sneakers and you go to crossfit- because you know you need to. because you can't let IT rule, besides you'll feel poorly either way, so you might as well move your body and see your friends while feeling bad.  that is what i did today and i'm so glad.


a wise friend once asked me why i thought i was "given" migraines.  it was an interesting question.  why is this the particular thorn in my side? and if i'm stuck with it, how can i learn from it, how can i use it for goodness? 


so i thought about it.....migraines help me to understand suffering better.  they remind me to be much more thankful than i ever was before, for days without pain, they remind me to pray for people who suffer.  but they also help me to understand zoe better- they are unpredictable, they often take over, they make me feel crabby and helpless, they can somedays fill me with self-pity.   i also know there are some things i can do and take, and some things i can avoid, to help myself not get headaches. and i know that my participation or avoidance of these things is frustrating and unfair.  zoe also knows this for herself. these are things that zoe feels too. we have this in common.  migraines help me to know a part of her life that i wouldn't be able to know if i wasn't "given" this "gift".

i wish i didn't have them.  i wish zoe didn't struggle with nonverbal learning disorder. but these things are part of our life, like it or not, and we have to do the best we can with them.

maybe today i got out of bed with that throbbing head and put on my exercise clothes because of zoe- because of her example to me- because of her strength and ability to press on- even when it hurts and or is scarey.  maybe because she gets herself up in these mornings, a week before she turns 13, and goes to a school where nobody else in her class struggles to learn, or has trouble filtering out sounds, or can't ride a bike, or has to wear a special seamless tag-less uniform.  maybe i found the courage to get up and go because i was going for an hour, and she has the courage to get up and go all day. every. single. day.


today when i picked her up, this is what i saw:

she said, "mom! i'm the student council representative for my class! it's a real honor."
what??

"yes it is zoe! that is great! i'm so proud of you."
wow. 
she doesn't just get up and go, she doesn't just blend in, this girl shines. 

i

don't close your eyes

a few summers ago when i was beginning to wrap my mind around the changes that were happening in our family, when i was contemplating home schooling zoe, when i was spending my days overwhelmed by her overwhelm, i heard her belt out from the way way back of our car the words to the switchfoot song that was playing on the cd player,  

"this is your life, are you who you want to be! 
this is your life, is it everything you dreamed that it would be when the world was  younger, 
and you had everything to lose.

don't close your eyes
don't close your eyes..."

at the time, it was a moment of glory for me.  she may have had no idea what those words meant, she may have just liked the tune- but i interpreted it in full- as if she were asking herself the question- as if she had insight and motivation and the possibility of influencing her own life.

today we were in the car again, listening to this switchfoot song.  zoe said, "what do they mean 'don't close your eyes?'"  and i realized she hadn't grasped the depth of meaning back then- or even now.  now in another season when i fear her giving up- her stubbornness taking over-  when i feel her closing her eyes. 

the last month has been hard- lots of change- loss and gain- resulting in regression- steps backwards- returning to places i was glad we'd left.  this last month, we've spent a lot of time talking with zoe about her role in her own life.  about choice- that she has one.  about empowerment- that she can do things.  about her life being her very own, and about growing up, and decisions the good ones and the bad ones.  because she is growing up and it is her life.

she has this way of acting helpless and then wanting assistance and refusing it- or worse, accepting it but then regretting it and becoming furious. i'm sure it's all a symbol of her internal conflict about growing up- wanting to be independent and fearing independence, on top of an already conflicted self image, on top of trying to process her legitimate challenges, and trying to identify which to try to overcome and which to accept as who she is. so lately she gives up- gives in- doesn't try. the cobweb of it all is messy and sticky and not neatly spun and it's easy for me to become entangled - it's easy to become ensnared.

i've been trying to be calm.  to be a patient, listening mom- instead of the path of least resistance raving mad mom.  i've been trying to remember that her spin-y web is even more tangled for her- that it is harder to be her in this, that this needs to be supported through and not screamed away.  i've been trying to remember that she'll get there- we'll get there again. 

stories help because everyone likes stories.  we've recalled helen keller - who overcame great challenge- who had to chose- who made herself who she wanted to be with what she had- who opened her eyes- even thought they were blind. 

then yesterday i saw on facebook that my first friend ever- my original bff- just won a prestigious medical teaching award from Tufts University school of medicine.  and i remembered her story. 

erica was an amazing student, an avid reader- always hard working and naturally smart.  she was also incredibly kind and fun and sweet and thoughtful.  when she was zoe's age she got very sick and nearly died.  she experienced a miracle. she had a level of sickness that most people do not ever recover from- they never regain the cognitive ability they had before becoming sick.  for months after she regained consciousness she struggled to regain control of her body and her mind.  she did physical and occupational therapy- she work to walk again, and to see again, and mostly, to remember.  the coma she was in had stolen her short term memory- she could remember all of us- but not what we told her the minute before, not if we'd visited the day before.  it was hard and tiring and frustrating, but true to her character- she never gave up.  never.  she never uttered a discouraging word, she never said 'poor poor me', she never took her life- the life re-given her- for granted.

it took not just days, or weeks, or months- but years for her memory to return.  and it didn't just show up one day- every correctly firing neuron fired because of her blood, sweat and tears.  at first she learned to compensate- to lead the conversation in a way that would give her clues to what had happened or been discussed before. then she learned that writing everything down was essential- and that repetition was her friend and so she posted note cards everywhere.  she knew that she needed her memory to be sharp and focused and reliable- because she'd decided to become a doctor.  over the years i watched those note cards displaced around her house change.  at first beside her toothbrush was the krebs cycle, then the aminoglycosides, then the pathophysiology of kidney failure.  over and over- she'd read, she'd prepare, and over time- she began to remember.  slowly the cards began to fall off her walls, as the information she'd diligently and repetitively put into her mind, began to stick. her heart, her being, was meant to be a doctor.  she is exactly the doctor i want to care for me- smart, kind, loyal, hard working- and someone who knows first hand what it's like to make the choice to believe in yourself- and to do the work of recovery. she didn't close her eyes, or give up.  she knew exactly who she wanted to be- she knew exactly who's life she was living. she is a hero. she is my hero. 

i don't expect or want zoe to become a doctor.  i don't even care if she goes to college. but i do want her to believe in herself- to love who she is- and to try. i want her to overcome things- even if they are small things- because that builds confidence.  i want her to put up her own 'reminder notes', to care enough to retrain her brain- i want her to sing loudly from the back seat that this is her life- i want her to be who she wants to be.  i want her to never give up- to never close her eyes.

this day

the last time zoe was in a class room was 3 years ago.  it was a class at a school designed and made for kids with learning differences. still, she felt different.  even her differences were different.  she had become so overwhelmed by it all that she hid under her desk- she couldn't deal anymore- it was over. 

i've written about it before. low point. being called out of a family meeting, where i was trying to help people make decisions about treatment and life and death.  picking her up, finding her there- her little nine- year- old version of life and death.

things changed- we needed a new plan- a plan that apparently didn't involve organized education in any form- a plan that involved a lot of me- me with her- me not in the hospital- me not doing what i'd spent 10 years training to do.  it was hard- but it was good- and it was right- and it worked.  meaning she began to breath, to relax, and slowly to start to learn with out the distraction and pressure of peers.

today she ventured back to school- a private non-special education international school, for a visiting day for students coming to school next year.   this is an amazing community of people from all over the world.   a school not afraid to think outside of the box, they are open and willing to try.  they are kind and creative, warm and welcoming, and they have pet bunnies and a giant tortoise named steve.

i had lowered my expectations as i promised myself i'd do about everything this year.  they were low low.  i felt the day would be a success if i wasn't called to come and pick her up- if i didn't find her hiding under any desks- if her acceptance wasn't revoked.

she did it.  my phone didn't ring.  she was sitting in a chair at the end of the day- the teachers said she did just fine.  her 'work' wasn't complete, she asked a million questions, an aid sat beside her.  but she sat there, she didn't run or hide, she didn't scare away her teacher, and she was smiling at the end of the day.

this is one day.  one isolated day.  that is all. 
this day means nothing about how her next year will be- it is not a guarantee of anything. 
but this day we both could see how much she's grown.
we'll take it and be so so thankful!

nonverbal learning disorder sucks

it does. i'll say it.  it sucks.
how my heart hurts for her some days.
because it's just so unfair that the basics of life are so hard for her.

"we never said what we were dreaming of..."

and i can get so mad. so angry, when i see it, when it screams at me- the hard parts.  and then i can't.
i can't live in that place of magical thinking.  i can't pretend.  i know that- it's just there.  with us.  like her blue eyes and her thick blond hair.  the way her mind works it makes mine have to work so much harder.  because we start from different places.  we speak different internal languages.  and i hate that.  i hate that i don't 'get' her- that she doesn't 'get' me. 

the day started with song- zoe shining- the love in her pouring out in songs as we sat on the bed and harmonized and drummed on the bed frame. and i cried because it was a golden moment.  a moment of connection.  and i was okay with an hour of music, i was okay with not making her write, i was flexible, i followed, she led.  but then how soon it crumbles. a word i spoke confused her, and made her mad.  engine hit red.  and the joy of the music ran out through the cracks in the window.


"sun turns the evening to rose,
stars turning high above us"

"i watch the stars from my window sill.  the whole world is moving and i'm standing still."

then hours of dissection.  together we mapped out the feelings, the reactions, the sticky, the change from green to yellow to red, like leaves, her internal process of dying into winter.  the winter of our discontent.  together we map out what hurts and what helps and what is regulated and not regulated and how it feels to her and how it feels to the people in her life.  how it feels to me.  to friends.  to siblings. that actions, her actions affect other people.  that we are connected, crucially connected, even when she doesn't feel it.

and it was as if it's all new. as if it's a revelation.
the thing is, it is.  because with neuro-cognitive dysfunction, these ideas feel new.  because the natural is not natural for her, it's not even learned by experience, it must be taught. again.  and again.  and, once, again,  and again.  and this is why we home school.

"i know it don't come easy, but i love you, i do."

100 sit ups later- she was back- back enough to know she's hungry.  like a pre-verbal toddler who gets crabby when they're hungry- the disconnect between sensation and communication.  100 sit ups and an early lunch and we were back on green.

so i went to make a house call for a bad bronchitis in exchange for a tank of propane.  it was necessary.  i wasn't gone long.  but long enough.  for things to fall apart.

because hide-and-go-seek is hard when you're visually-spatially challenged, because it's hard when you're not sure where you own body is in space, because knowing what people mean, what their eyes say, and their voice, and their face, and the way their body stands and gestures, and their words, is hard and exhausting.  why can't they just use words- she thinks- it would all make so much more sense.

"say you're sorry i can take it. 
let it bend before it breaks."

it wasn't that big of a deal.  it's not the end of the world.  except that it is her world.  it is our world.

"all of these lines across my face, tell you the story of who i am
of how i got to where i am."

so we collected her bits in the car and went home.  i took a moment.  she went to her room.  i didn''t cry.  i didn't yell.  i just felt the lines grow heavier and deeper on my face and i reached for my nvld-book by kathryn stewart. because it helps me remember why she struggles to hide and to seek.  because it makes me feel a little less crazy.  a little. because it orients me back to this life that i gave birth to 12 years ago.

and even today, i found myself walking through the delivery that september 11th and to the months that followed as i tried to be a new mom and a medical student.  even today i found myself stretching to remember if she pointed as baby- if she attempted nonverbal communication back then, if i was ignorant or not involved enough in the theory of her mind.  even today i thought, if only i'd paid more attention, why did i not teach her to point back then?

guilt shows up trying to share the burden that grief holds, but it never helps.

i read page after page and found both understanding and overwhelm.  but mostly i am overcome by my deep, deep love for my little girl, and how scared i am about her growing up and leaving me someday to find her way in this giant, scary, mostly non-verbal world. 

"the night is here, the day is gone, and the world spins madly on."

i now remember that she did write today.  not copy work.  she wanted to write out the song lyrics that were going through her head.

"our God is an awesome God, he reigns from heaven above with wisdom, power and love, our God is an awesome God!"

it's dark.  the lights are out.  the candles are on.  the time is 'now'.  i will rest in this - under the shadow of His wing.

life is beautiful

it's been a day of ups and downs and kids struggling to just 'be' in the midst of craziness.

yesterday clover went to her new home.  it was sad- really sad.  after she left- zoe bawled on the couch- bryn tried to cry but kind of couldn't and jude said he was crying in his heart.  i cried because i felt so badly for the kids losing their dog- especially zoe, as it was mostly her dog- and for this monumental step towards our move- our new lives- and because i'll miss clover too.

so i guess i expected that today would be out-of-sorts and it has been.  everyone is mildly giddy and picking at each other and whiny, all at once.  today the boys went to 'vbs' (vacation bible school) and zoe and i had 3 hours to ourselves- just us- like old times- it was nice.  recently i've started decreasing the doses of her medications.  i did this for two reasons- one was admittedly financial.  her medications are expensive and hard to get in uganda and so when i realized that we could leave here with a years supply if i cut her dose down- i thought it was worth a try.  also, i'm curious.  she's been on them for two years - there is not a lot of data on these medicines in children- maybe it's time to try lowering the dose.  the problem is- i feel like i'm looking at her through a microscope again- i'm in data collection mode- science experiment land- and that doesn't feel good when it's your kid you're examining. 

is she stickier than normal?  is she struggling to regulate?  it she better? 

and really who knows?  because life happens.  kids get older- they mature- they change- they have pre-teen hormone drama- and i've been lax about gluten- and dairy- and we are moving to africa and losing the dog and pretty much turning things upside down.  i guess it's not a great experiment after all- too many variables.

but i was impressed with her letting go of clover.  i was impressed with her ability to allow herself to feel it- to cry- to be sad- to not just turn it to anger. this was big- this is progress. 

and it's these times that i realize that it's all so subtle and variable, and out of my hands and we just do the best we can- but really, that is all. we just try.  we do our best.  and hopefully in all of it- we try to love each other- hold each other- protect each other and be gentle.  then we mess it up and start again. 

i think that is why i struggled with the movie 'the tree of life'.  i think i felt the danger and the subtlety of all relationships. i think i saw myself in both the character of the father and the mother.  i saw my potential for abuse and passivity.  my ability to be a victim of my nature and my attempt to embrace the grace.  life is big- i am small.

that is it.  but- life is beautiful.

summer rain storm

it smells like rain.  that earthy, metallic, dirty sweetness that emerges right at the start of the rain and stays for a while- hanging in the air, while things cool and soften and senses are enlivened and we are reconnected with the actual earth part of the earth.  the sky is full of noise and water and i love listening to it talk. like it's venting. like it's been a kind of bad day and it wants to share- to shout- to cry.  i get that.

zoe is at her friends house- her 'friend with autism' as she likes to refer to her. i'm wondering how she's doing in this thunderstorm- is she crying, covering her ears, all a dither? or is she being calm and helping her friend who might also be afraid- might also be more sensitive to the deep voice of the sky?

zoe.  me.  this process of trying to understand it- to frame it- to know it- to be still in it.
there are stages.  there are pieces.  i'm realizing that we are just.... here.  profound isn't it.

when i was in boston this past weekend, i took lily out for the afternoon.  lily, zoe's 'best friend', my god-daughter, the daughter of my 'best friend'. lily, normal 11, lily who've i've loved since before her birth, lily who i've watched hit all her milestones, lily who i looked at to show me where we'd be someday.  and it was an afternoon of what i'd hoped for in san francisco.  we shopped, we got massages, we laughed, we talked about 30 rock, we ate gluten and dairy.

it was all good and fun, and i allowed myself to be OK with it- to make it not feel like i was cheating on someone- to let it just be and not be betrayal.  i had wanted to take her out to thank her- to acknowledge her friendship with zoe- to let her know that i know it can be confusing and challenging and to tell her how much she means to zoe and to me. 

and it was part of a process- it was part of me accepting things- part of me being OK with who zoe is - that she is not lily- that she will never be lily- that she will have her own milestones and her own path.  that it can be full of it's own flowers- that are watered by the leaks in the cracked buckets.

today i heard the wiggly voice.  today i had a good conversation about what will be hard for her about moving to uganda.  today she kept eating pasta with her fingers instead of her fork.  today she cried about missing our dog clover if we can't bring her with us.  today she woke her brother in the car by pulling his hair because he was 'breathing too loudly'.  these are my days- her days- our inconsistent, confusing days.  i can not keep crying about them.  i can not wish that they'd go away- or my hair will go completely gray and my face will wrinkle into a prune. we are who we are.

the storm is still raging.
the porch is very wet.
the boys took their bath by candle light.
zoe came home with her ears covered in protection from the thunder and the baby crying in her friends car.
the air has cooled.  the roof is dripping, it's plinking on the metal grill cover. the sky is now quiet but the rain is speaking.  and it smells like a summer rain storm.

"‘Listen to the rain,’ she said.
‘It’s raining hard.’
‘And you’ll always love me, won’t you?’ she asked.
‘Yes.’
‘And the rain won’t make any difference?’
‘No.’
‘That’s good. Because I’m afraid of the rain.’
‘Why?’ I was sleepy. Outside the rain was falling steadily.
‘I don’t know, darling…I like to walk on it, but it’s very hard on loving.’
‘I’ll love you always,’ I said.
‘I’ll love you in the rain and in the snow and in the hail."

— A Farewell to Arms - Ernest Hemingway

a really good day and some other things

it's delicious out.  and to make it even better, it has been a truly delicious day.   last night no boys woke us up with growing pains. this morning zoe not only came downstairs dressed, but with out being asked she made herself (frozen) pancakes, poured her own drink, even got out her medicine and sat down to eat.  in this process, she didn't yell at her brother, or get frustrated by how to work the microwave, it was, a moment.  i was amazed and thankful.  because for zoe, this task requires high levels of motor planning, focus, patience and initiative- i am so proud of her.

for me, that was enough- before 9:30 am we had accomplished enough.  even if the rest of the day was a scholastic disaster- i was going to be happy.  but, that was only the beginning.  she told me that she'd finished her book 'charlie and the chocolate factory' yesterday (again, on her own) and then gave me a summary of the book.   she quietly did her copy work, she motored through fractions of all things- and got it!

all i can think is, who ate zoe and left this child in her place?

we've been reading 'good queen bess' about queen elizabeth I.  she loves it, because she loves stories- and that is what history is.  today it led to all sorts of great questions- what are small pox? when did they discover germs? how did they discover them? what about microscopes? then onto the geography of great Britain and europe; then some grammar, defining parts of speech, discussing vocabulary words, even breaking down metaphors: "Walsingham's net caught many fish" when speaking of elizabeth's secretary's trap to catch mary queen of scots in treason. we discussed the nuances of 'good and evil' and tried to expand on her dichotomous, disney-esque  approach to all stories.  we talked about the layers of history and that there are different perspectives-different motives - different sides.  we talked about religion and war and violence.

it was home-schooling at it's best- organic- minimally planned- student led- really, all i did was facilitate, let her sit on my lap, and be available.  all i did was quiet my crazy mind and be still.

there is a quote from an american indian-
 "the busy mind is sick, the quiet mind is good, but the still mind is divine."

oh it would be divine to have a still mind.

zoe was off to play with her "friend with autism" and then to her social group.  so i went to get my youngest and run the dreaded 'target' errands. Target must be another name for "how to always spend  $100 when you go for household paper products".

so bryn and i are walking around finding all the things that we'd forgotten we "needed" - like spiderman socks in the dollar bin- and scotch tape.  we were in the boys section because jude's birthday is next week- and i'm noticing that pretty much everything is covered in skulls.

OK- my boys are all about them too- because of pirates- but do we really want our kids covered in creepy? i started flipping through the 75% off section of winter clothes and i'm seeing all these shirts with writing on them (and skulls- usually mixed with guitars).  the phrases on these shirts are all flip and glib and sound like they'd come out of the mouth of bart simpson.  i'm thinking how fascinating this is from a sociological perspective.  and then i come across this one, scribbly writing between drawings of skulls and roses and guitars, saying:  "not here for a long time, only here for a good time."  what? you're in kindergarten.  i hope you're hear for a long time.  and i know you don't know that huey lewis song.

and i'm thinking about my generation as parents and how we dress our kids and how it's still really all about us. i mean is there such thing as a 'cool' two year old? sometimes i want to go up and ask the decked out kid in the pink floyd prism shirt what his favorite song is on 'dark side of the moon'.  it's like our little kids have become bumper stickers- carriers of our image-they're part of our 'brand'. 

what's funny to me is that our generation plans to raise true individuals- kids who aren't just little versions of us- we're OK if they don't want to do what we do or share our views or play the sport we played- but God forbid they want to wear elmo and not the rolling stones.

we all want our kids to look good, i get it, i do too.  and if we wear concert t-shirts than it's not that weird that we'd put them on our kids- but it is amusing to see someone dressed like an 1986 burn out, toting a sippy cup and whining.

the only kid of mine who has any interest in fashion- if you can call it that- is my 4 year old.  he currently has 4 shirts that he will wear- batman, a gray north carolina outdoor store shirt, a plain navy shirt, and a grandma-found-it-on-sale nerdy gray, turquoise and red stripped long sleeve polo shirt.  i don't like any of them- but i love that he cares- that he has his own opinion- that he's differentiating.  because that's what he's supposed to do.

personally i'm a big fan of the hand-me-down.  not just because it's free- although that is definitely a plus- but because it's funny.  jude wore a shirt all summer that said "go uncle jake!" and he doesn't have an uncle jake.  and bryn got attached to a shirt covered in camels that said 'jerusalem' across the bottom- but we've never been to israel.

zoe's fashion is all about comfort- no seams in the shirts, no jeans, no tags in clothes- and the less fabric touching her skin the better.  "Zoe, you're shivering, are you Ok?"  "i'm fine."  " you do realize that you're wearing shorts and it's snowing out."  "mom! i'm fine!"

but really, what do i care who wears what- we are so lucky we have options- and it was a good day! 

i leave you with my line of designer kids shirts- images on the front- writing on the back.

                   "i'd rather be wearing elmo- but i'll take one for the team."

     
"my parents think this shirt is cool, but they don't even own the album"

                                               "i'm scared of my shirt"

reconnecting the circuits

spring in february is fantastic.  my yard is covered in daffodils, the trees are really budding, i'm spending most of my day outside on a porch- loving it. if only i could move my bed outside- i would sleep there- right there under the moon.

we had a good day.  a day of peace.  zoe came down stairs dressed instead of in her pajamas - without being woken up- without clothes spread out the night before, without being reminded.  it might be a first.  when she arrived downstairs i was on the phone - raising my still hoarse voice with a broken system at work- trying to get something ordered and pushed through the bureaucracy- for one of my patients - the one with ALS.

i had gone to his appointment with the ALS clinic on friday- to make sure he was getting what he needs- that things weren't falling through the cracks.  it was long and hot and he looked much worse than 3 weeks ago when i last saw him.  now he can't hold up his head- his arms are stiffer- he can't lay down without feeling like he's suffocating.  he looks like he's aged 15 years in the past 6 months.  looking at him, you'd not think he understands everything- perfectly- which he does.  he is literally trapped in a body that can't communicate. he has no speech.  he can't eat. he's losing his ability to write.  he's beginning to lose his ability to breath on his own.  it's really hard to see.  i know he needs me to talk to him as i would anyone- and i do.  he needs to feel like a 59 year old man- not a preschooler- which is how he is often treated.  we had to make plans- to get him some breathing assistance- to get him to be able to sleep at night.  i can't imagine the frustration he lives with.


zoe waited patiently for me to finish the call and got herself some cereal- asking all about the patient and what caused ALS.  after rocking through math she wanted to play a frisbee game on the wii.  she plays this maybe once a week (ie: it's not new) and she's pretty good at it.  and the weirdest thing happened and i had this incredible insight into her life.  in this game you move your arm as if you're throwing a frisbee and hold down two buttons which you then release when you want to let the frisbee fly.  right away she starts calling to me, telling me it's broken- the frisbee won't release.  but it will when i do it- so i realize that she's not letting go of the buttons and i remind her.  i'm really surprised that she has forgotten this.  well, this goes on and on.  she can't get the message from her brain to her hands- they just won't do it.  i was baffled.  i can't imagine how frustrating that would be.  so we broke it down into steps.  we just held the remote and held the buttons together and then released them- over and over and over again.  then we moved our arms like we were throwing the frisbee- over and over- then we put it together- practicing moving your arm and letting go of the buttons together- again, and again- then we started the game and put it all together- it worked!

the good thing was she was in a good place mentally.  she wasn't upset about getting help- she wasn't mad that she couldn't do it.  if she had been it would have been a full on disaster.  and, our plan worked- once her brain reset the motor process needed- she played for half an hour and did well.

i'm sure this happens all the time.  it must be why her copy work is so hard for her sometimes- why her she struggles to get things opened- or buttoned- or tied.  even if she knows the steps- the motor neuron connections aren't always functioning properly.  and what if that's similar to what happens in her brain when she has a meltdown- she knows she shouldn't react a certain way- but she just can't get her voice and her face to do what she wants.  i don't know.  but she handles it with more grace than i would. i can't imagine the frustration she lives with.

when i was her age my dad decided it would great for me to learn tennis.  a sport you can play for life- he said.  our neighbors had a court so he could teach me.  after a few lessons they nicknamed me McEnroe.  i had such high expectations for myself.  i knew where i wanted the ball to go and i couldn't get it there sometimes and i would throw my racket in frustration.  so how would i handle dealing with zoe's issues?  definitely poorly. 

what was kind of funny in the whole thing was she kept saying, "mom- i don't know why i can't just let it go! i know i need to let go- but i just can't do it!" it sounds like me. why can't i just let it go! 

i might not struggle with the her motor planning difficulties- but i do struggle with behavior planning difficulties.  i struggle with knowing how i want to act and then not doing it.  how i want to be and not be- and doing the opposite.  and i get so frustrated with my inability to put it into action!  so i'll try to remember this- that in many ways i do get her.  and i'll try to be more gentle with her, with me. 

breath deep- the outside air- where ever you are.

whole

it's freezing outside- ok, well for atlanta.  i'm sitting beside my african bracelets dreaming of warmer weather. mike leaves tomorrow for uganda and the house will finally be for sale. but it's been a crazy week trying to get everything done before he goes.  he is amazing- truly.  he can do so many things, and so many things well- that i sort of stand in awe.  he preps well, paints well, does carpentry well, cleans well, and he can even do plumbing. he can move large pieces of furniture by himself- like queen mattresses and desks.  he can clean up a yard in no time, fix broken furniture, and replace ceilings.  he has tools and a good mind and really big hands and patience.  the only thing i have in that group is maybe a good mind. which i discovered today, sometimes isn't enough.

yesterday i decided to do some yard work, just some raking and planting.  oh my word- i haven't raked in years- and it's hard- like work-out level hard (which i also haven't done in years). so i'm raking in my vest in the afternoon feeling like my mom in the '70s- like i'm the person with the push mower- the person using the antiquated method of yard clean up- like i'm old school. it was hard, and i kept thinking of the girl in that book 'the dirty life' and how she's all about being out on the farm doing hard manual labor- and not complaining- so i stuck with it, until the realtor came over and i quickly abandoned my leaf piles.  but i did feel connected to the earth- to my body and the muscles in there and their purpose.  i think if we all raked instead of using leaf blowers we'd all be buff and healthy.  i plan on doing this more often.

today i set out to chop some things off the todo list and was quickly annoyed and then humbled, probably because i insisted on homeschooling while doing the work.  this entailed zoe locating herself where ever the work was.  so first i painted the breakfast area while trying to "teach" zoe multiplication partial products.  that was a challenge- especially because we'd never done partial products before and it requires multiple steps and lining things up correctly.  i really enjoyed the painting part.  the math got done- but not with out our classic conversation- which i'm happy to report wasn't a meltdown- but maybe not just a conversation either.  it was the 'why did you help me' one.  the good news is that the painting distracted me enough to not get really angry with her- and my hands were busy so i couldn't throttle her, so i just painted and she regrouped and we talked about how she wanted to stop being so stubborn and accept help.  which is the first step- acknowledging you have a problem and then wanting to change.  she's moved from pre-contemplation to contemplation- maybe even to preparation. (that's  behavior change language).  and that is great.  it will take practice.

then i painted the big banister post- and i'm thinking "maybe i should do manual labor- it's so satisfying" and i got into this zen-like place of following the lines of the wood and cutting the edges.   next, i went to 'touch up'  zoe's room, but the paint can wouldn't open.  i tried for about 20 minutes.  i pried and pried slowly, around the entire can- chanting 'slow and steady wins the race' -not sure what race i was referring to- but confident that eventually, the can would lose. it didn't. how can i not be strong enough open a paint can?  so irritating!

i gave up, and decided to go down to the back porch and take down the mike-built monkey bars.  i knew this would require an electric drill, which i eventually found, and i went out into the back- feeling really cool- because tools kind of are cool and so are the people who use them- which apparently isn't me.  i unscrewed half of them but the others wouldn't budge.  i felt like such a girl.  stuck.  dependent.  and it made me so annoyed.  i called my brother to make sure i wasn't doing something dumb- like using the wrong drill bit- and told him how i felt.
"but you are a girl!" he said.  "you shouldn't feel badly that you can't do the same things as mike- he's a lot bigger and stronger than you."


but i did feel bad. i want to accomplish whatever i put my mind to.  i want to not be hindered by my limitations. i wonder if that's how zoe feels - hindered by her limitations. so frustrated by her inability to do something that she can see other people do. other people her age- or even younger- like her brothers.  that would do me in.  and maybe after years of this- it would translate into the 'why did you help me?' bit.  the summary of oneself as dependent on so many levels, would force the tangible frustration at getting help with things that you actually can do.  it's like an outlet for years of that 'stuck' feeling.  i guess i should give her a break- and me a break.

in grammar, zoe and i were reviewing homophones: words that sound the same but are spelled differently and can have different meanings. like toe and tow. these are very confusing for zoe.  she can have a hard time telling which one goes where.  she's very literal- and so this is extra tricky.  she'll often ask for clarification.  "you mean which one- but not like a scary witch, right?"

i was thinking about the homophones 'hole' and 'whole' and how weird it is that they sound the same but mean not just something different, but the opposite of each other.  one word implies something missing, or an empty space, the other, completeness. separated by 'w'.  one letter separates void and totality. we think of those ideas as ends of a spectrum- as extremes.  i tend to live in that extreme world- to flock to the ends of things- in an overly dramatic kind of way.  joy, pain. black,white. all, nothing. empty, complete.  mike is better at living in the middle- of holding hands with the holes and the wholeness in his life.  with his big hands and his patience he is able to do so much- slow and steady he goes.  i'm like a wiry firecracker - sitting in the box- then once lit- i can do amazing things in the sky or explode in your face and you'll lose an eye.

but maybe it's easier than i think. maybe it is just one letter- and not a universe between hole and whole. slowly filling in the holes leads to wholeness. but accepting the holes leads to a different kind of wholeness. for zoe, bit by bit accepting some help- overcomes the stubbornness.  for me, accepting the hole-y-ness of my life will get me to 'complete'.  they're not that far off- they are related- by more than their sound.

i went back upstairs to face the paint can while zoe read 'charlie and the chocolate factory' out loud.  i had help- a new idea from my brother on how to open it.  slow and steady- i pried at it again.  my hands aren't that strong, but i used a longer tool- more leverage. a few minutes later the lid yielded.  her light pink walls look beautiful. 

tea and eucalyptus

i'm back to the freezing cold south. drinking a hot cup of tea. the leaves are gone and the trees are scratching at the sky, naked and cold.  the sky is a different color when it's cold- it's paler and retracted- like it's avoiding something- creating a space between itself and the earth.

finally, goodbye to fall.  i guess it's about time- it is december. and i'm ready.


most of time i don't like tea.  it tastes like dust, or hot water wearing a mild disguise.  i wish i liked it more.  it seems like something i should like.  in the book i just finished, Little Bee, the main character, describes tea as tasting of longing. of the distance between where you are and where you come from.  i love that description. i can relate to that- it makes me want to give tea a second chance.  so i'm sipping away.


i came from a place of seasons- and when you do- you become rhythmic too-it runs in your blood- craving the change- waiting for the wind to blow in cold.  when mike and i moved to san francisco it was very disorienting- trying to figure out whether it was fall or spring- because when you grow up with those clear distinctions, you feel differently in the fall and the spring.  those transitional times of preparation for winter and summer are important. with out seasons time becomes slower and you have to adapt to subtleties. you have to learn new symbols- like the blooming of the cherry blossom trees or the haight street fair.

zoe spent her early years in a nearly seasonless place.  this place shaped her. san francisco is where her conscious story began. from age 2-8 she smelled eucalyptus, felt the fog in the morning and the sun in the afternoon, the summers were pretty similar to the winters- never too hot, never too cold. there was a peace in this continuity.

i think it's easier in some ways to grow up like this. less complicated. less dark.  less need for the change, for the drama.  life is milder.  you have one wardrobe.  i'm so glad that zoe had 6 years of this, foundational years, glad my boys were born looking out at the golden gate bridge.  maybe it will seep into their blood too.  the calmness of constancy. 

but i wonder about the seasons of her internal world.  about why today she can feel every seam in her clothes, why every touch of her hair feels painful.  it's hard for me to get it.  it's hard for me to not get mad.  i find myself telling her she needs to over come it.  she needs to retrain her brain, to override the signal- to correct the pathway- to take out the boston winter- and remember it's just a little fog.  i worry that if she doesn't re-organize the tract she's laying down that it will become automatic, always something mildly uncomfortable will be read as pain.  and then she'll be miserable and overwhelmed by the little sensations of life. so i tell her to tell herself there is a difference between pain, and discomfort.  that there is a range of "doesn't feel good"- it's not all or nothing- i'm trying to move her into gray.

i get the passion and the drama- i do.  but life is so much easier with out it.  the colors of life are beautiful- sustaining- joyful- but living in the extremes is tiring. i want for her all the joy and passion, even the sadness's will be there- but i want them for her on the outside.  there is enough out here with out tags and hair brushing to ruin your day.

san francisco was a good place to grow.  i found pieces of me there, that i couldn't have all muddled up in the snow of boston and the georgia heat. that external stability gave me a place to learn stillness.  and it became easy to let go of the need for those seasonal changes- the fog and sun was enough.

i sometimes remember zoe as a little girl in san fransisco- running on the beach all bundled up- standing outside by the bougainvillea, collecting acorns under the eucalyptus trees - filling her pockets with that transforming scent- that scent of longing- the scent that stretches further to between where you've been and where you're going.   may it carry her on.

the candle of hope

i never thought there would come a day when i would chose to not watch rudolf the red-nosed reindeer.  it has come.  it's pouring rain and has been an awful day.  just all covered in yuck. and at five o'clock- everyone just melted down. except jude- bless his lovely little heart- he is such a good brother.  bryn was bawling because jude came home with a styrofoam airplane from the kindergarten prize box for finishing his reading log- and bryn wanted one. zoe was melting down about not wanting, and wanting help with her sewing sampler and i was just really wanting some peace and quiet.  so i pulled out rudolf and let them watch.  and now i have an hour of quiet.  i can hear the rain, and the squeaking of rudolf's red nose.

by 10 in the morning i was already failing to lead by example.  i was angry. i was unable to rise above my emotions.  not only did i not add positive energy into the universe- i added much negativity. sorry for that. 
it was a day of me feeling sorry for myself- me wishing i was elsewhere- me full of doubt- full of discouragement. 

ironic in this season of advent.

advent means 'coming' or 'arrival' and the season is about anticipation and preparation and longing.  it's about hope.  it is about waiting for jesus.  it's about fullfillment of promise.  it's about relationship.  it's about the intersection of God and man. 

in advent we light a candle each week- and in this first week of advent we light the candle of hope.  how slippery hope is.  ephemeral.  some days we can grab it and hug it and it sustains us- we feel full of it- we see all the little pieces adding themselves to it like a magnet and it grows and we sail away on it.  then other days we can't see it at all- not even the shape is left- it's just vanished away- and all the little pieces of the day push our memory of it further away.

people who are dying often want to talk about hope.  they want to hang on to hope.  its a huge part of our human experience - it gets us up in the morning.  we spend our lives changing or realigning our hopes- re- framing them- because we need to have it- so when hope for one thing leaves- we have to have hope for something else.  i remember when we were dealing with the awfulness of jude's diagnosis of a probable brain tumor, my friend called asking what she could do, and i said, 'find me a piece of hope in this'.  it's what we cling to.

i've spent a lot of time thinking about hope with zoe.  what do i hope for her? how do i let the day to day influence that hope? why do i so easily let it be stolen away? i criticize her for giving up too soon and i do the same.  i forget that God is a god of small things- broken things- and impossible situations.  and there in is the hope.  i, myself, in my arrogance or my belief in my control or influence, let go of hope.  i look inward or just in front of me and blow out the match. 

perhaps in this advent season i can embrace the candle of hope. maybe i can and should light it all day, not just at night, to be reminded of God's promises-to let go of expectation, and to be filled with anticipation, which is much more, which implies hope, implies faith. maybe i can be still and  wait in that.

the wind today

right now i can feel God in the wind- moving things- shaking things up- then being quiet and waiting- then moving again.  i'm out on the back porch- regrouping- it has been a challenging day of a homeschooling.  zoe's brain is just off- and i can tell it's making her crazy.  we've plodded through- albeit with many an inappropriate comment from me ("That's it! i'm going back to work!") super- way to model handling frustration- way to be helpful- as if she would say "oh no- not that! OK i'll get it together now!" being a parent is so humbling.

by the time her domestic science class rolled around at 11- i was due for a break- there was no way i was going to class. apparently she felt the same way- when i picked her up- she was playing ping-pong with some boys while her class worked on their menu planning activity.  ( i would have done the same thing probably- but that's not the point).  her teacher remarked that at least she wasn't bothering the other kids.  that is good news.  she reminded me of Shiva- the twin brother of Marion in Cutting for Stone- his inability to function in school- despite his intelligence- his almost confident focus on what mattered to him and his ability to "climb into the tree house in his head, escaping the madness below, and pulling the ladder up behind him".

everything i told her to do- she either 'forgot' or just tuned out- was it disobedience or just legit confusion, inattention, overload?  it's hard to know with kids, but especially with nvld kids. one time an excellent therapist told me that when trying to figure out if behavior is just plain bad, vs. due to a disability- and then choosing to either punish it- or understand it - it behooves everyone to ere on the side of understanding.  she said if you're wrong and it's bad behavior- you can always adjust that- work on it, correct it later- but if you punish for disability- it will be years in therapy.  my heart was telling me to just let it go- give her the rest of the day as down time- but it's hard not to feel like i'm giving up- or giving in.  but that is what i did.

she just came running upstairs from down in the play room - elated.  she had been trying to climb up on top of this  ikea swing chair and use her arms to pull her up to swing on it instead of in it.  this is a HUGE motor challenge for her- it requires strength, coordination, balance and trusting your body.  in less than 5 minutes she'd done it- and done it with out help.  she is so proud of herself! i'm so proud of her.  it reminded me to trust my gut about her- to not over think it- each physical developmental milestone gets her brain more organized- we are all interconnected- mind, body, soul.

i think that cool north wind blew into the playroom and helped push her just a little onto that swing.
i think that cool north wind blew as i walked the boys to school and noticed the feel of their hands in mine- no longer the baby sized hands that get swallowed up, but they are now substantial - they fit.  
that wind blew in the grace to appreciate the leaves falling around us as we walked- to notice the contrast of the wet black bark and the pink and red and yellow leaves that still cling on- and the color of the blue gray sky.

God is everywhere.

dropping the bar

it all started because i cleaned out the closets. there i found years. years of memories- years of zoe and her work. and as i sorted through it- i could compare- i could measure progress- from pre-school until now- 5th grade.

i remember finding my own box of school work not long ago. it held the first things i'd done in kindergarden- a stapled book of dinosaur drawings - up to my fifth grade comparative book reports and poetry journals. i wasn't an A student growing up, but you could clearly see the progress, the maturity, the process was step wise- it was normal. each year i became better with handwriting, spelling and sentence structure. and with each year i became more invested in my school work.

when i went through zoe's work- i honestly became really discouraged. i realized that while there clearly was improvement, the slope was much flatter. she's gone from pre-school to more like 2nd grade in many things. she'd had some great examples in early years and some horrible examples last year, that didn't look that different from each other. that inconsistency stared me in the face.

and suddenly the lens shifted and it became about me, not her. what am i doing wrong? where on earth do i set the expectation level? what is she capable of if she could do the amount of writing we do now, 2 years ago? why doesn't she care?

and so i did totally the wrong thing.

i shifted into operating out of fear. that never works, and pretty much always ends badly.

i woke up today and i raised the bar. the copy work i gave her was twice as long and from a book, not a nice large fonted hand-out. the narration she gave about our reading about king henry the viii was disjointed and random and i tried to insist she try again or let me show her an example of "a good narration".

(great idea you over educated almost 40 year old with years of practice summarizing massive amounts of information into a few sentences very quickly. way to make your struggling 11 year old which a generalized information processing disorder- whose brain fights to order information correctly and then battles again with it's retrieval- understand. way to make her feel good about herself- compare her to you!)

it didn't help that today was one of those days when she woke up with her brain just not doing what she wanted it to. those days. those days when the distraction level is at "red"; the attention level is at "zero", and the sensory processing was off. you know when you sleep funny on your arm and you wake up and can't feel it at all, then slowly that painful -tingling sensation happens and then in a few minutes you can move the fingers a bit and eventually it resumes function? some days she must sleep funny on her brain.

between her off day and my upping the ante- it was the perfect storm.

half way through the day- when i began to consider poking my pencil through my eye with frustration -i stopped and listened to both of us and realized that i needed to get it together. i either needed to go smoke a pack of cigarettes, or go for a run. since i don't smoke, i went for the run.

i ran through our neighborhood on the first day that has felt like fall. it was so beautiful- but i felt sour. rigid. uptight and afraid. i couldn't figure out what i was so upset about. why i was so annoyed with her. i was angry at her lack of visually objective progress. angry at the inconsistency in her work. angry at her struggle. angry that her struggle is my struggle. but mostly so angry at me. because my anger fails her. it leaks out and spoils things. it takes what's good and makes it ugly. it is not love.

i spent the afternoon, while she was at Brain Balance, re-reading Kathryn Stewart's book "Helping a Child wtih Nonverbal Learning Disorder or Aspergers's Disorder". it's one of my go-to books when i am forgetting what life is like for zoe. when i loose site of the intensity of her challenges. when i need to be humbled. when i need to be blown away by her actual ability.

and there it was in black and white. my visually objective evidence. as i read, i began to remember where we've been. how differently the bar should be set- how the bar needs to be made of rubber or fabric, not metal or wood. it needs to be able to flex. that perhaps there shouldn't be a bar at all- in my silly little mind- perhaps it should be a beautiful mountain. one that we all climb at different speeds. one that we each take a different trail to get up. and maybe i need to remember that her pack is a lot heavier than mine. that anger weighs it down. that love lightens. and while i can't carry hers, i can walk at her pace. i can still hold her hand.

how we write the story

i want to trade mine in for a new one.

yes i'm talking about my daughter.

today, i just want a neuro-typical 10 year old. i don't want to have to have to spend a hour and then have mike spend an hour talking out how to not say to some one, "is your dog about to die?" and then deal with all the dis-ease that comes with that. her anger at having to be told what is socially correct, her anger at not knowing, her anger at me for telling her that- for disrupting her perfectly constructed day of good feelings. she hates negative feelings- when they come, she is like someone teetering on the edge- and if pushed over - she'll ride the downward spiral into the dark place, a place of facing the things she likes to not think about, like having a nonverbal learning disorder, and having a hard time understanding the subtleties of language and expression.

she fell hard. and i sat on the bed while she sat in the rocking chair yelling,
"i hate my brain! i want a new one! fix it- you're a doctor! fix my brain- i need a surgeont" it probably wasn't the right time to correct her and say "it's surgeon not surgeont", but i couldn't help it.

and when i told her that she had a good brain- it became, " i hate being ten- ten is a stupid age- why did i ever have to turn ten!" it's always blame- something else is responsible for her feelings. and as i'm listening to her, i'm having a little bit of an out-of-body experience. part of me wants to laugh as the level of drama and part of me was so overly annoyed because i wanted us all to go to the summer festival in our neighborhood, and part of me was annoyed at the same thing she was dealing with. i was so angry at her brain too. so mad that things don't come naturally to her, that i have to teach her what to say, and then deal with the fall out of that.

after my hour of trying - i realized i was done and getting no where fast- so i took the boys to the festival and mike and zoe met us after another hour of her crying through her bad place. at that point, i was hot and bothered- cranky but trying.

at the festival her music school had a stage and her teacher asked if she wanted to play-

"oh dear God" i thought- not today- today we're teetering- today might be disastrous.

her teacher asked what she wanted to play?

silent night

it's june

oh- yankee doodle

and with that, she just hopped up and started to play, in a very flexible way- she made a few mistakes- but roled with it- she even fell getting off stage and landed on the keyboard, making a very dramatic exit, but didn't even care- it was like no big deal.

and this is the mystery of this child. she had a complete meltdown over being told what might not be a good thing to say, in the privacy of her own home. but has no fear or anxiety about getting on a stage, with out any preparation and playing piano- doesn't get phased by error or even care that she fell off the stage. not perfect- but ok with her mistakes. i would never have been able to do that. but the fact is, it could have been reversed- on another day. she could have thrown a fit on stage and pounded the keyboard and cried, and not cared about being corrected in conversation.

from what i remember from psychiatry rotations, stress is significantly exacerbated by unpredictability. humans can deal pretty well, even with really hard and terrible stuff, when we know when it's coming. high stress comes from not knowing when the ball will drop- not knowing when your brain won't be able to do math- or when you can't formulate your idea with words- or when your daughter might loose it.

when we left the festival mike took the boys home, and zoe and i went off so she could buy something with her money. but nothing at the art festival was under 8 dollars. we finally found a little store and after much debate she settled on a set of glitter animal "silly bands".

i tried to convince her to buy the 'fairydust'- but she wasn't interested- rats!

i'm thinking "phew" these are what a "normal" 10 year old girl would buy (maybe 8 year old, but close enough). we managed to escape another tiny stuffed animal or plastic princess crown, or wind up toy. but did zoe want to wear them on her wrist? no - she wanted to play with them, to line them up and count them, to have them have conversations with each other- to compare their features. now we were at the ice cream store, (she had the non-dairy sorbet- delicious) and in front of us are three girls her age. they're wearing armfuls of silly bands. they have shirts written on or signed by their friends, they're just hanging out.

i felt that heart pang. that longing- for normal- that feeling of feeling sorry for us. followed quickly by guilt and then sadness at my short sightedness- my human simplicity- my inability to ride it out- to have her bravery. i want to stand on the stage of my life- and be ok with not-normal, with "different, not less" and believe it.

most days, thankfully, aren't like this. most days i see her for her beautiful, amazing, interesting self- with out a thought of comparison. most days i don't think of "normal or not normal". and in reflection, i'm acutely aware of my disability, my weakness, the parts of my heart that are hard, selfish; much more so than hers.

she's working through the really hard stuff of her life. she's becoming her own. i need to spend more time re-framing it for me and letting her just be.


because really...

she spent the morning, grieving her challenge with appropriate social communication- and her ten year old desire for independence from her parents.
she then pulled it together- had fun and hung out with a friend at the festival, and played her first piano gig- she bought some age-appropriate toys and was very creative in her use of them.


it's all in how we write the story-

independence and freedom for all

i knew if i posted that things were going well, that it wouldn't last. murphy's law. forgot to knock on wood. maybe i should have been done with the blog. end on a good note. maybe casein and milk aren't that bad. maybe too many vitamins is. maybe it's just random. maybe i should have called this space, "be crazy and never get it". or "saga of a nutball mom".

ugghh!

it's just life, isn't it? at least life with a child with learning differences- or is it all children? that is often the question. how much is attributable to her special needs versus normal 10 year old behavior? i mean she is becoming a "tween". there are hormones- i'm sure. there is the separation, individualization, that is supposed to be happening. but for some reason, in our context it just seems more challenging.

here's an example.

we spent the weekend in the north carolina mountains. absolutely beautiful, inspiring, fun, relaxing and all else posititve; and today, we had to leave. this requires that "going somewhere with your children thing"- stripping beds, packing clothes and toys and getting them to clean up, etc. i was trying to find zoe to get her to clean up with her brothers.
my parents mountain house is actually a main house and a little house- attached by a porch/ veranda. this is fabulous- because the kids get to go over to the little house to play, make forts, what ever, and we can sleep in, or read or talk with out disruption. kind of a win-win. independence and freedom for all. the land is on a dirt road, it's rural. there are neighbors, but not a lot of traffic, and not a lot of people. the kids are allowed to play outside with out us, but they need to tell us where they're going, and they are absolutely NOT allowed anywhere near the lake without adult supervision, and a life jacket.

now for most of zoe's life, she's been unbelievably compliant. she's never been a disobedient kid. she's been trustworthy to a fault. tattling on herself- even this year.

"mommy, i'm sorry but i ate those cookies."
and i'm thinking, 'i have it so easy!'

but lately, the past few weeks, she's become sneakier. and a little bit entitled. she's suddenly decided, or so it seems, that if she doesn't agree with the reason behind the rule, then she'll just go ahead and not follow it. she'll have consequences and she'll apologize, but she'll again, decide to follow her own desire and doesn't care as much about obeying the rules. most of the time this is not dangerous, or in anyway a big deal. most of the time it's like, " i know i'm supposed to go upstairs and get dressed now, but i'd rather stop and play the piano." (mildly disobedient, but no big deal).

the problem is, i don't trust her judgment. so when i was calling to her over and over for 20 minutes today, with no answer, unable to find her- i panicked. all i could think was that she'd decided she didn't agree with the rule to not go down to the lake, and had gone down, swam and drowned. i was just about to go down to the lake, looking for evidence, when jude came out of the little house shouting, "i found her!! she was hiding in the little closet."

i wanted to throttle her.

but the thing is, really, it's not that big of a deal. i mean, she really thought she was playing a trick on me, being funny, hiding. but to me, it was horribly disobedient, because i was so afraid of what could have been. because ultimately, i don't yet trust her. i dont' trust her judgment. if it had been jude, i might have been mad that he didn't answer when i specifically said, "answer me!", but i trust him, that he would never go down to the lake without me. but zoe, not the same thing.

and i found that i was getting mad at the possibilities and the disabilities and the overall big picture. i was reacting to her sometimes poor judgment. i wasn't allowing her to just be a goofy 10 year old.

she got in big trouble. she had to clean up the toys all by herself. she got a giant lecture on trust and being a "tween", and the struggle to find independence and still not make your parents crazy. she asked if this was all because of her nonverbal learning disability and i honestly said, " i don't know."

because i don't. maybe it's just 10 year old stuff. maybe it's having that immature right brain. but hopefully, we can get there - and i'll have to work extra hard to explain the "whys", and enforce the "because" and walk that line, find that balance between letting her wander, or hide and calling her back when she's gone to far. we both need to trust each other- she needs to know that i can let her go, but only if she'll respond when i call her name.

so we talked it out- and trust became our new goal. it's the key. we have the same goal- (thank God!) for her to become a functionally independent adult, who makes good choices. so that is what we'll strive for, and maybe, because of our unique circumstances, we'll learn it early, before "tween" becomes "teen". but the road is long- and as it's usually one step up, two steps back, but i'm getting used to a little shuffle.

unglued

are you all sick of it yet? my ramblings about zoe and her stickiness?
it's OK if you are, because i am. no really.
last sunday, stucked (that's not a typo). i couldn't even write about it until now. it was gorgeous outside- really perfect. warm, not hot, no bugs, nice breeze, not humid. and so we went hiking. and it was just like zoe was made out of glue. let me pause to define a "sticky thought". it's when you get stuck on something and can't move on. like the fact that you can't bring your dog on the hike. like that you didn't know where your shoes were and someone found them for you. like you didn't meet your friends baby cousin, before your friend did. things that are completely irrational and or minor, become massive and attached. and this was where zoe lived last sunday. stuck. sticky. glue. everything that someone noticed- she was upset that she hadn't noticed. everything that someone thought, she was upset that she hadn't thought it. and literally it went on and on and on. i kept walking wanting to laugh and find some humor in it- but i couldn't. i wanted to find the joy- and if you can't find joy in that kind of beauty- there is a problem. i began to wonder if she needed more meds, if i needed to start some meds. i began to, once again, feel deeply sorry for myself.
we were with another family- OK kind of my family- my best friend since childhood and her three kids. one beautiful newborn, one boy my boys age and one amazing daughter lily, 5 weeks older than my daughter. even with them, these people who know and love us- i felt ashamed. of her. of me and my lack of ability to overcome this sticky day. but i was swallowed by it. my friend happens to be a psychiatrist and she said that how we feel when zoe is like this, is how zoe feels. she 'gives' it to us, because she doesn't know how to deal with it. the only problem is- i don't know how to deal with it either. all i know is that if she felt half as bad as i did on that hike- poor her!

childhood isn't supposed to be like this. it's supposed to be full of wonder and discovery and trying new things and becoming your own person and finding yourself bit by bit. and the slowness or lack of this, is the hardest part to watch.
at the end of the hike the kids wanted to play in this beautiful stream that ran into the river. the three boys and lily took off there shoes and explored-collecting rocks and sticks, feeling the cool moss and algae covered stones under their toes. the sun was poking through the trees and the kids were laughing. it was perfect. and in the exploration, there was risk, small risk. walking upstream on the slippery bottom was hard. there were sharp things to be avoided and three of them fell in. but it was that typical childhood thing of living life-experiencing it with it's small risks- falling in, cutting yourself- loosing your stick or socks- and rolling with it- being OK with the unknown. being OK with the small scrapes. having the risks be worth the growth and knowledge - learning the ultimate lesson of life- that it's worth it. meanwhile - zoe was still stuck. off to the side- talking with herself to help herself calm down. because each new sensation is threatening to her. her intake system reads the small stuff as massive. her perception is that the risk is much too great- and her fear of falling, or not being able to do it the way she thinks she should- inhibits her- so she misses out- but she hates that-so it's doublely bad. and when she's having a day like this- just keeping it together is doing well.
so i sat on a log and watched it. i couldn't engage. was the risk too great for me as well?

i drove home with my friend and our three boys. i couldn't talk about it in the car- because what is there to say? i'm sorry? i hate this sometimes? do you have any idea how lucky you are that you don't have to deal with this in your life? how can you begin to relate to me? these are the things i thought. did they make me feel better? no. did they make me feel more isolated? yes.

that day in church, mike and i had been teaching sunday school and missed the sermon- but the next day i listened to it on CD. it was about suffering. it was about pride in suffering. it was about choosing your faith or not abandoning your faith in suffering. wow. there i was dwelling in it. in the thick of it. letting it run me. feeling superior in the realm of suffering. i was making bad choices.

last fall, when a successful medication began causing zoe side effects i drove the 45 minutes to her psychiatrist for our 7:30 pm add-on appointment. in the car, i cried- trying to not be seen or heard by zoe. i cried because it seemed that no matter what we were doing, it seemed to be foiled. she was finally doing well on this medicine,but had developed a facial tick. the sticky thoughts that had been consuming her were finally better and now what would happen off this med? i was at my wits end. so i drove and cried and prayed. when we went through the toll- i caught site of the bumper sticker on a pick up truck next to me.

"walk by Faith, not by Sight."

and i started to smile. Trust.
Be Still and know that I am God. i've got your back- even when you can see it. i care for her, even more than you do. maybe there is a better plan? maybe there is a medicine that will work even better and not have side effects (and there was).

walk by faith, not by sight- even on that hike. even in the car with your friend and her seemingly perfect family. even when the medicine isn't working. and when it is.
get your toes wet again. stand on the slippery rocks. hold her hands - even when they're sticky. and dont' be afraid to get stuck too.

letting go

it's been a week- a busy week- and a very up and down zoe week.
sunday was horrible. monday was really good, and on and on.
i've been thinking about separation and compartmentalizing. about the ability to not be so effected- to not loose myself in zoe's world. because i do this. i see my mood follow hers- i let her dis- ease cause me dis-ease. it's not good for me. it's not good for her.

mike isn't like this. he is able to maintain himself separately from her. where as i let it eat me up. when i see her struggling internally and externally - i can feel my face grow heavy and lined and old- i start to slowly slide down into that pit and i end up feeling so sorry for myself and for her and for our family. the weird thing is that i don't do this with the boys. granted, they don't have the same level of intensity. but still- i'm able to not take it personally, to have what feels like, an appropriate distance from their drama. is it because they're boys? because they seem like they'll "do fine" in the world, and as they age and mature they'll appropriately separate from me? is because with zoe i feel guilt? or because my world right now is just so physically entwined in hers?

mike and i talked about it on sunday night late- in the dark- with the windows open, in the quiet- except for the tree frogs churping. we realized it's related to my fear of abandoning her with herself and her emotions. and i realized that this is messed up. she needs to be able to live her own life with out her mother's emotions wrapped up in hers. she needs to have her own emotional life- she needs to perhaps, even, dare i write it, feel a bit of abandon- in order to self identify- to find herself- to grow.
i need to let her go.
at least a little.
i need to let her be- with her sticky thoughts- or even her sadness about having nvld- and i need her to know that i'm ok with her as she is- not because i say that but because i live that.

when i was a little girl- i had two great fears: being "called" to the mission field- to live among bugs and tribal people who spoke no known language; and being the parent of a special needs child. i know- i'm weird- who thinks of those things? who worries about them when they're 8 years old? i did. and so to prepare, just in case, i read books about missionaries and special kids. and i didn't even like to read. i remember reading about "lovey" some girl who was probably autistic- and with lots of love and therapy- began to come out of her world and into everyone elses. what was i so afraid of? what was it that seemed so scarey to me about raising a child with differences?

when she was little, i made up a song for her:
oh zoe, my zoe i love you so much may you always be free
oh zoe, my zoe if you weren't so much you- i would never know me

i think i somehow knew that i would have a child like zoe-
someone who would come out of her world and help me come out of mine-
someone who would teach me- even by accident- to see value differently. to learn patience. to understand God more clearly. i can let her go, because He never will.

finding the pose

today i went to yoga.
i'm the tall skinny girl in the class who can't really get into the pose. my hamstrings are tight and i'm just not that flexible. i'm the one with the borrowed el-cheapo mat and the non-lulu-lemon exercise clothes. the girl who the teacher never comments on. except once.
i was in the back of the room- last except for the wall. we were doing triangle pose. i'd been going regularly for about 6 weeks and i figured no news was good news- that if i'd been way off - someone surely would have told me. but no. today i was in a different class with a different teacher.
"ok those are some nice trikonasana's!" he says walking the room, "except-hey you in the back! bend from your hip not from your side."
i looked around- it was me.
"i know that - but my hip doesn't bend any farther."
"ok- everyone stop, gather around me and i'll show you what i'm talking about."
but no one else needed to work on their trikonasana-
"lets try it again"
" no! bend from the hip- do you know where your hips are? who's class have you been in?"
but i did know where my hips were and i even knew what he meant, it was just that i couldn't do it- i just couldn't get my body to do what i wanted it to. and the harder i tried, the harder it became and i felt like i was unraveling. it was so frustrating. and embarrassing.

that is what zoe has to deal with daily. trying to get her body to do what she wants it to. knowing the outcome, but not understanding the process to get there. or even knowing the steps but not able to get her muscles to coordinate together to accomplish the task. it would be maddening- it would make me crabby and have sticky thoughts too. i wish for one day - i could be in her skin- in her mind. i think it would change me forever. an added frustration is the lack of reliability in mastering something. last summer- when she was 9, she learned to tie her shoes. this was an incredible feat. but it was completely sporadic. there were moments when she did it quickly and with apparent ease and then she'd just not be able to - as if that path in her brain was closed for the day. this made her crazy- understandably.
"why can't i do it today when i could do it yesterday!"
and it made the rest of us live in fear of her trying hard things because there was no guarantee that even if she'd done it before- she could do it again- and we knew where that would lead. this is perhaps the hardest thing about nvld- and many other learning differences- the inconsistency that inhibits the ability to feel fully confident. eventually - after months of success- she can feel OK- but even while writing this, i'm wondering how it would go if she had to tie her shoe today?

sometimes when she can't get her body to cooperate with her mind, she'll say with teary eyes and a quivery voice, " do you know how this feels?"
and now thanks to trikonasana and the brave teacher who dared call me out, i can say, "yes! i can!" and for this little window into zoe- i'm grateful.

pieces and packaging

one of the hardest and most isolating things about having a child with differences is that people want things to be well-packaged. people want things in bites. they want things with happy endings. because nobody wants to hear about a mess. nobody wants to untangle your mess. it makes other people uneasy. but really- a lot of life for us, is not well packaged, maybe not even packaged at all. it's often a lot of mess.

it's hard to write that- it's hard to write from a place that i know well, a place that will really always be. and it doesn't mean that life is bad or that next week won't be better, or that things are not "OK". it's just that things sometimes aren't. and that is what has to be OK.

it's the little things- the days when she is stuck like glue. when we're out to eat and she asks over and over, "where do sticky thoughts come from?" and has that far off look in her eyes- and i feel like i'm loosing her- to herself. and from where i sit i can see a table of girls her age laughing together- connected to each other- able to pick up the subtleties of language and expression and move the pace of the conversation appropriately and no one is left behind. and my face feels heavy and i can feel the sourness invading me, a hollowness- a sorrow. will she always be left behind?

when i picked her up from her afternoon program, she was upset and angry at some 6 year old who took her pile of grass- and she stomped her feet and shook her fists-while the first graders stare at her and back to me, and to her- as she tried to pull it together and tell me how mad she was- and i tried to find that place of protection for her, and for me, to separate us somehow- and i realized that i have no skills and i try to hold it together for her, for us, but inside i'm falling to bits, because this little display isn't some temper tantrum that will turn around quickly. this is a deep disconnect, a lack of awareness of how other people perceive her, a bad feeling, with out understanding of why people aren't getting her, and generated out of overwhelm.

how do you package these? how do you wrap them neatly?

today, i hold to this:
"yet this i call to mind and therefore i have hope, because of the Lord's unfailing love, we are not consumed."

and i do have hope.
and i love her intensely, and we are not consumed.
in pieces sometimes, but never consumed.