better

i'm back.  back to the southern heat and the tree frogs and the humidity that starts early and stays late.  the leaves look heavier now- hanging low-burdened by the long summer- tired.  and i'm back to my life again- but in fast forward.  back to 'to do' lists and packing and final appointments and doing paperwork and remembering, ahead of time, the things i might forget.

yesterday i was in a funk.  a big and deep funk.  granted august 2nd started with us awake at midnight somewhere in south carolina driving speedily down I-77 with 3 more hours until home.  we got in at 3am - put the kids to bed and slept until they woke us up at 7.  that day re-started with frustration as mike had to go into work for the day and i was left picking up the pieces of our life that had spread out over the month of being away.  after some toast and juice and a lot of coffee, and asking the kids to brush their teeth three thousand times we finally headed out for our errands.

i love how kids think you want to do errands, and then that you want to drag them along for their company.
"but we don't want to go to the car fix-it place!"
"really?  why not? it's so fun! and i'm really excited to go! and i'm even more excited about bringing you three with me! that will be fun and much easier than if i were doing it alone!"

first we went to the car body shop to get the estimate on how much it will cost to fix the side doors that were backed into last week and found out surprise surprise, that it will cost more and take longer- of course.  i told the guy i was moving to africa in 17 days and needed to sell this car- and pleaded with him to prioritize.  he said he'd try and we left the car and walked to the rental car place.  so two hours later, and after all three kids had lost dessert for climbing across the chairs in the rental car waiting room, having a full wrestling match on the floor of the waiting room and yelling about not being able to guess that the animal was a beaver in the 20 questions game we played in the rental car waiting room , we got into our rental car and drove to the market. 

at the market i found myself questioning everything- 'shoot i forgot the look in the freezer at home, maybe we have enough food for the next 2 weeks'.  trying to explain to zoe that we won't use a giant bottle of syrup in the next 2 weeks while the boys were both shoving their watermelons into the cart on top of the potato chips as i'm saying we can only buy one. in the parking lot, i saw a pregnant woman happily walking back to her car while my kids are pushing each other to see who can get in and buckle first and i'm thinking 'lady you better think twice before you do that again!'  but i realized that i was just sleep deprived- and so were my kids.

when we got home, i discovered that our home phone and the internet were down- so life as we know it was on hold. i couldn't investigate renewing our drivers licenses, or ordering our medications from canada, or downloading various forms to be filled out.  and as frustrating as that was- i really just wanted to write.  i wanted to sit quietly, to try to be still,  to create some space for myself and to write it down here.
but it's good.  because i would have poured out all my doubt and fear and overwhelm and a whole lot of feeling sorry for myself.  because i did feel sorry for myself.  i felt like everything was going wrong and it was all unfair.

it's just that leaving is hard.  saying goodbye is hard.  and things like the last trip to the market are hard- because they remind me of that.

today has been much better.  sleep is a good thing- even when it's interrupted at 2 am with random ideas of things i don't want to forget - like a good pair of hair cutting scissors.  today we did more errands - but with out chair climbing and yelling- and only one wrestling match on the floor of target :).  today we spent the afternoon with friends at their neighborhood pool.  it was 100 degrees but the water was cool and the company was so good that i didn't even notice.  the boys played with their friends and zoe met many new friends and the entire afternoon went by without a single sticky thought from her- even in a new environment- even at a pool she'd never been to before- with kids she didn't know.

and i was thankful. 
because a year and a half after starting this blog- i can write that zoe had an afternoon with out a single moment of sticky- that she is doing so much better. thankful for my month in boston with family and old friends and for how well zoe handled that.  thankful that family that comes to help out tomorrow. and that our house is under contract. and thankful for today, for friends and cool water and sleep and being back to our lives here - even if it's only for a few more weeks. 

that place

i'm in that weird place of getting ready to leave a place. that place of feeling time.  it's hot outside- sticky, stagnant heat and i want it all to slow down- to make time do what the weather feels like- i want the world to mosey.  to slow dance.  to stretch out and just be.

i have that feeling of leaving a place like you want to savor it.   like you can see ahead and you know what's coming and you want to remember what you're leaving- what your loosing-not in a bad way- but in a real way.

today is friday and so i was blessed to be at work.  blessed to be able to care for others.  blessed to feel it as a blessing and not as something that consumes me.

two of my favorite patients are in the hospital- sick.  one is like my african american father.  he is.  i'm trying to be objective- but i'm finding that i'm advocating for him like i would for my dad.  this is probably a good thing.

today i gave my letter (email) of resignation.  i adjusted pain medications. i called the airline and inquired about flying pets.  i discussed prognosis.  i looked at the budget. i gave someone a hug and told him his cancer was progressing.  i am in two places.  here, and there. 

these are the snippets of my day. 

yesterday, was good but especially in comparison to the years before.  yesterday we were at the pool for hours with various friends entering and exiting and zoe did very well.  i was remembering where we were years ago- one year ago, two years ago- and how hard it was.  how a vacuum could ruin everything.  how a sticky thought could send her flying.  and those things were there yesterday.  and there were some sticky thoughts- there was a vacuum.  but she did it.  i did it. we overcame.  we saw small victory- we saw diffusion.  and it makes me breath a sigh of relief- a sigh of thanks to God. 

right now, i'm listening to paul simon, to 'graceland', and it reminds me of being 17 and feeling the heat of that african sun on my left arm as i sat in the front passenger seat of the SUV bumping along the dirt roads of kenya.  my two-tone tan- my first taste of that land that i love- the scent of the burning leaves and trash- the dust on my feet. 

trying to wrap my mind around this upcoming newness. 
place and time and here and there- now and then and to be.
it's all good.

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"

the park and the red sea

it's 70 degrees outside.  sunny.  GORGEOUS.  this is when the south rocks.  you can get a weekend like this in january.  i feel a little bad for the sleeping plants and trees who are being woken up too early- but for the rest of us- it's a beautiful thing!

the park playground is a great place.  it's kind of like a neighborhood for people who don't have neighborhood kids to play with.  its' a different culture than school.  kids are thrown together- different ages and different streets or sections of town- different schools- different challenges and strengths.  and at the playground, labels that might follow you during the school week, are gone. you are not 'the quiet kid', or the kindergartner, or the kid whose in special education.  you're the kid who likes the play star wars- or who has a dog to be petted. i love this experiment in social interaction.  i love watching my kids find there way in it- and just being the backdrop- the haven- and then finding some adults to talk with.

zoe is honestly a playground pro.  she can work the scene like no one else.  she is bold in her introduction- she is fearless and determined. she doesn't need me at all.  she can let rejection roll off her back and move on.  and that's what's great about the park- there is always another kid.

today we went because we had to be outside- for every minute the sun was shining- because it would be a crime to not be outside in this luxury.  we packed a picnic lunch and went for 2 hours.  i even brought the dog- which i never do. everyone was thrilled.  this particular park is perfect for kids my kids ages.  there are swings, a lot of playground equipment, and woods and hills and a stream- something for everyone.  we ate first and then they were off.  zoe ended up playing with a bunch of 7-9 year old girls for hours.  there was no drama.  no sadness.  no stickiness.  even around the monkey bars.  jude and bryn found a 10 year old boy who liked star wars and seemed to me to be a bit on the 'special' side, and they played with him for hours.  it was all the beauty of public shared space, of organic community.

when we left- everyone was in a better mood.  they had run out their energy on the hills and fought battles that needed to be fought with sticks.  they had found their conversations and shared their stories and been who they needed to be for the afternoon.  they'd made new friends- friends they planned to meet up with again. it's the beauty of life in all it's childhood purity.

for me- it's a lesson in letting go. see, i still have the mild urge to check in - to 'save' zoe- to hover-to intervene- to help navigate, but i don't.  i practice resistance.  i let her sink or swim. i remind myself that she is her own, that she must do this with out me. that if she gets horribly upset and melts down and does the wiggly voice and covers her ears and screams and goes running away down the street- that it's OK.  that it will be OK and that i'll be OK.  but that doesn't happen on the playground- only in my mind each time we're there. no.  she amazes me- and each time, i'm a little more comfortable, a little less on edge, a little better at letting go.

for me-it's about allowing the process to run.  it's about being alright with 'different'- it's about accepting my identity for what it is.  a mom of a non-typical, playground pro, lovely, engaging, delightfully different kid.  so i think i learn more at the playground then they do.

today in church the sermon was on the crossing of the red sea.  the israelites had just left the egyptians- just left a life of slavery and had followed moses, led by God, into the dessert.  and now they were trapped between the encroaching egyptian army and this giant body of water and they were really mad.  the situation stunk and they were mad at moses and at God and actually wished they'd just stayed in egypt as slaves.  they did what i do all the time.  felt the fear and got mad.  lacked the faith and wanted to run back to slavery.  because known pain is often better than the scariness of the unknown.  and God tells moses to tell them to be still.

there it is again.  stillness.

but once they are still.  quiet.  not freaking out.  he tells them to move.

he opens up the sea- he allows passage to safety.  he leads them closer- to the promised land.

lessons in faith. lessons in patience.  lessons in stillness.  lessons in obedience.

the result is provision.  non abandonment.  safety.  growth.  lessons learned.  awe.

for me- i'm always trying to run back to the painful but known.  i'm always finding a giant sea in front of me to throw me into doubt and fear. i'm always struggling with trusting.  i'm often feeling trapped and forget whose leading me.

so i love these days of remembering- these days of seeing the fruition.  of seeing the promise.
these days when stillness happens- and crossing is possible- and there is a moment of awe- and i feel the grace.

learning to choose

after all my angst, and all my self-pity, zoe did great yesterday.

i got the full report from my friend.  she sledded with the other girls for about an hour, and then they played inside.  there was no drama.  there was no stickiness.  at the end of the time two of the girls wanted to walk to the park and sled more- my friend knew this would be too far and too much for zo- so she told her she could stay and play at the house until i came to get her.  this could have/ often would have- been a perfect melt down opportunity. but she just said she was disappointed and went to play with lily's new harry potter lego kit.

when she came home- i asked her how her afternoon was.  i'm thinking "fabulous! i played with the girls, we had fun, i didn't get upset- it was great!".  and i got, "i'm really jealous that lily has a harry potter lego kit and i don't!" in a really whinny voice as she stomped her feet.

and this is where, once again, i talk before thinking.  i said, "really?!?  that is your take home of the day?  i heard you did great! and that you had fun! and that you weren't sticky- and all you have to say is that your jealous about some legos?"

i didn't stop to think that probably- she was absolutely exhausted because of how good her afternoon was, because it takes her so much energy to follow along- to not be anxious- to not be overwhelmed- to stay with the conversation- and to manage her body on really icy hills and sidewalks when her vestibular system sends her different messages, and when it's really cold and she's wet and her sensory system is on overdrive. that for her- it's running a social marathon.  that not melting down about being left behind when the other girls went on to the park- was huge for her- and took a lot of work.

she said, "well, i didn't tell lily i was jealous, i didn't get upset, i saved it until now."

therein lies the greatness. the progress.  the growth.

because it's not about being 'cured' of her ways of thinking- it's about learning how to respond to her thoughts and emotions- about when to reign it in, and when it's safe to let it out.  it's about knowing that even if you feel upset that you can't go to the park- that your portion of the playdate is over, and you channel it into being jealous about some legos; that it would be weird to say that out loud.  and she got that- she did it.

i was so proud of her.  i said "high five for that good choice!" she said "no, i'm not doing well right now".  i told her what a big deal it was that she is not victimized by her sticky thoughts.  that she is learning to choose how manage her feelings- when to share them, when not to- that home is safe- she can go to that place of letting it out with us- that we get her.

it still trips me up that she doesn't know how to take a compliment- that she minimizes her successes. and that she doesn't seem to feel the joy she should feel when she triumphs socially. it could be a sign of her oblivion. that she just doesn't really care that much.  that maybe she really does care more about legos than relationships.  but i don't think so.  i think it's because she's a perfectionist- in all ways.  and she knows even though she didn't get sticky or upset-it probably doesn't classify as social triumph. she knows she's different and she didn't feel connected with those girls.  or maybe she did, but she was disappointed in not going to the park with them and it was channeled into jealousy.  i don't know.

what i do know is that peace doesn't come from no sticky thoughts.  peace doesn't come from no meltdowns in public- although i often fool myself into thinking that.  peace comes from being OK with what happens- whatever it is. peace comes from the stillness. and just as she is learning to make choices about how to manage her behavior, i'm learning to make choices about being still.

today my celtic book of prayer reading was:  "Stillness must begin in the heart.  It is a decision, an active choice, to become still, to still your soul. Sometimes, it is as if there is a bunch of monkeys in the tree-which-is-your-mind; and you will not still them by shouting.  If you speak quietly and gently- peace will result."

my mind often feels full of monkeys. and i'm not great at speaking quietly nor gently.  i need to move into actively choosing stillness. practicing it.  and ironically- zoe will be my inspiration.  

feel the music

i love how music can transport you to another time or another place. how it can elevate you where you are- so that the mundane process of making dinner becomes something else.  i've been listening to the sound track from the movie Red- it's french and dark and kind of haunting- it makes me feel that there is more out there- that i have histories behind me that i shouldn't forget about. 

sometimes i will go through long periods of forgetting about music (except in the car) and then when i find it again, i get so excited- it adds that other dimension- and makes things more alive.

i'll be honest- i'd like to say that zoe's been 'off' today- but really- it's me who's off.  i just woke up that way.
we have people coming and i think it stresses me out a little- but it really shouldn't -they are family-they know me- there doesn't need to be a lot of show- but there does need to be a lot of food.

i think i also have PTSD (post traumatic stress disorder) from two thanksgivings ago- and even a little bit from last year.

two years ago- zoe was at her absolute low point-her most anxious - her most out of control.  we were away at mikes parents house-we had our lovely au pair with us- and it was crazy town.  i can't really remember the details- just lots of tears from pretty much everyone- and a knot in my stomach the whole time-and a lot of stickiness.  there was distress. 

i think seasons are like this- we revisit things- we are cyclical - like nature. it's unavoidable.  and our senses have a memory that is stronger than just our thinking mind. ( i opened jude's old baby diaper bag the other day- and the scent of the bag- brought me instantly back to the basement of a hospital - waiting, waiting-endlessly for his first MRI to finish.)

the music- same thing- transportation.

so maybe the offness of today was just about remembering deep inside my head.  somehow my emotions knew what was going on in there, feeling the past two seasons, but i wasn't conscious of it.

i did know that i was off.  i did know that i needed to go for a run. and it helped.  there is something about movement that can bring quiet- running out the intensity inside.  making your body take on some of the work the mind is doing.  it's balancing.

this is what helps zoe most when she's off.  we stretch and exercise. she does push ups or her brain balance exercises- or 'wheel barrow'.  same thing.  hopefully she'll find her adult language for "engine work"- she'll find running or yoga or something that re-sets her. 

she's doing so well- i sometimes forget where we've been.  she's maturing.  she's funny- as in - has a good sense of humor.  she's connecting with her emotions. she's calling me out on mine.  it's so good to see.  zoe has always connected with music.  when she was two years old, she was listening to jazz and said, "oh - this is django reinhardt!" she'd heard it once. still she can hear a few notes and know who is singing or playing, she can recall all the words to a song she's heard once or twice- she recognizes the tone of the singer-the timber of the voice.  last week mike had a work party.  there was an irish band playing.  zoe was there with him and immediately started to dance- and improvise an irish jig.  the band loved it- they handed her a tambourine. she danced and played all night- not shy- in her moment of glory. zoe at her best.

maybe this thanksgiving will be different from the past two.  maybe i'll be able to replace those memories with some new ones.  maybe it will be full of song and transportation.

beautiful day

beautiful day, beautiful world.  beauiful girl. and i'm trying to get my head out of africa, although my heart is really there.

these days are scrumptious - truly.  the light reminds me of northern california- crisp and angled and sharp. not that thick, hot dusty air i've been used to.  it seems to energize and clear the head.

yesterday we went apple-picking. or tried too.  they were out of apples to pick.  and we were stuck in traffic for an hour- because of a moonshine festival.  that's right. moonshine.  red-neck awesomeness. it was coupled with an old car show, country music and a lot of motorcycles and fried food. every thing from an entire fried onion, to fried pies.  anyway- we finally made it, two moms and nine children (only three were mine- go erin!!).  it was so fun.  what was best for me was the normalness of it all.  zoe was pretty much just a kid.  there was no drama. can i say how much i love no drama? i love it.  my spine could relax. i could enjoy myself.  i could spread my attention equally between my three kids.  i could focus on spending time with my friend. 

it's the small things in life.  and i think what i'm actually most thankful for, in addition to having a great day with her, is the perspective i get from all those bad days. when things go smoothly- it's not to be overlooked- not to be taken for granted. it's to be celebrated!

so cheers!

one step forward

getting ready for homeschooling. ok, i've been ready but little bryn hasn't started preschool and really, it won't work until he starts.  i'm getting excited- but getting nervous. hopeful, but prepared.  we're trying a new method this year- the charlotte mason method. 

last year we didn't have a method- we winged it.  we used the american girl books as a backbone for reading/ phonics and history. she did copy work.  i tried worksheets for spelling and grammar from different books at different grade levels. i did another history book for the ancient times.  we did bible and art.  we did math- many ways.  we did geography related to what we read and also worked our way through part of the united states and their capitals.  it worked i guess.  it was very us. very fly-by-the-seat. flexible- perhaps too flexible.  i didn't feel i had a system which kind of bothered me. but what is worse- is i constantly felt like she was behind- that i was behind- that i was straddling two grades and not trusting anything.  that i wasn't sure if i should test her and make sure she knew it all well before moving on.  i would have days when i felt like she needed to sit there until it was done and days when i would let her call the shots more.  but, overall, i think she learned and we didn't kill each other- almost- a few times, but not quite.

the charlotte mason method allows children to move at their own pace.  it doesn't compare them with a standard.  it trusts that the child will learn- that we are all learning - that we are to guide and direct.  it uses literature, it uses "real books" not text books, to learn.  it values time outdoors, play, real life.  i'm really still learning the method and i have no idea how it will go over. but i'm excited.

i've been far from this writing because zoe is doing well.  she's been doing really well. and you know when i write it- things change. :) maybe her brain is balancing.  maybe because she turns 11 next week. who knows.

what do i  mean by "better" anyway?  i mean she's both more engaged and less sticky.  and when she gets sticky- she gets over it faster and with less drama. there is more flexibility. there is more self awareness- "oh i guess i don't need to apologize". (instead of just saying "I'M SORRY!"- in response to anything we remind her about- "zoe can you get your shoes on?" "I'm SORRY mom!!")

what do i mean by more engaged? she asks questions like, "mom what kinds of games did you used to play when you were little?" and then listens and responds to the answers. or "dad, how was your day today? how did things go at work?" or "aunt linds, what interesting things have happened in your lifetime?" 

for those of you with typical kids- this might seem silly.  but you have no idea how happy it makes us!  to see her be able to climb outside her own head- her own world- her own sensory system and enter into someone else's experience and then to draw parallels with other things in her life or history- is so exciting! the dots are starting to connect- her world is starting to make more sense and she's finding her place in it- and she is more calm, less stressed, happy. 

and that is what we want for her.  happiness.  peace. 

we will officially start homeschooling this week.  and perhaps all this zen will go out the window.  one of the hardest things about kids with learning differences is their inconsistency.  you can reach a new place and then loose it.  one step up, two steps back.  but we'll keep walking- moving forward- in stillness of spirit- and with faith.  so thankful for the weeks like these!

live it full

she died. my patient who was 39. the day i got back from Uganda- but i found out at work on friday. i'm really sad and i miss her. i miss her ability to smile and enjoy life even in pain, even while dying, even while dying young. i had a feeling that it would be like this- that she'd be gone when i came back, and i hated being right. on friday, i signed a death certificate of another beloved patient, and found out a new patient of mine, also 39- died the day before. what do i expect? i do end-of-life care. but somehow, it sneeks up on me. somehow it does surprise me- it does make me sad. it makes me question how i live.

things have been good lately. i write less when things are good- because writing it out helps me- it's my process (and, you know i fear jinxing it). there are differences with zoe- they are subtle but they are good. the way she recovers from things that upset her. the way she's able to be present in the upset- not far off in an unreachable place. she's connecting the pieces- she's picking up things she didn't before. she's a little less sticky- more re-directable.

this sunday in sunday school, she got overwhelmed by the newness- new grade, new teacher, new kids- she felt left out- so she said, "i'm going to disappear." and ran out. she came into the sanctuary and found me-looking like she was going to cry- but she didn't. i whispered did she need me to come out with her, or could she just sit quietly with us. she needed me to talk- so we left the room.

she told me how she felt- how she hated how she felt - how she didn't want to feel this way- and that she wanted to cry- and wanted to know if this was because of her nvld. i told her that everyone feels this way in new situations and that it's normal. that we all have to figure out how to handle that feeling- and that i was proud of her for being so quiet about how she felt because i know it feels bigger to her. that i was proud of her for holding it together- for describing her emotions so well, for taking the time to re-group.  after a few minutes, she wanted to go back to class.  and she did- by herself.  and it was all good.  this is huge! this would never have happened a year ago! there are changes - sometimes i forget to see them.

so i will look at my life more.  i will see the little victories and the big ones- because today i can- and other people can't. because while life is full- it should be lived fully- and because i've seen people- who live it fully, even when it's barely there.

thank you ms. b- you won't be forgotten.

face the music

i'm happy. today was good. nothing spectacular happened. it was just a good day.
i found zoe some pink heart pants at a thrift store- old well worn and so, very soft- she wore them- even with one tag still in. we had to rush to get to piano and then math tutor (who is my saving grace- and because zoe and i have been hitting a wall lately- is now doing math several half hours each week instead of the one hour slot). then to drop the boys, then back to get her from math. we ran some errand with minimal obsessing over small items that caught her eye and came home to do school. it took an hour for her to write her list of 10 words and their definitions. this is better than yesterday (1.5 hours). the time is not a measure of her ability- it's her distractability and her stubbornness. she's done the words in 15 minutes very well- but that is rare. and i've decided, right or wrong and i'm still not sure, to make her finish them, no matter what. for the sake of learning to finish a task. that life is not always fun. that when it's hard, you still have to keep going. because that is right. today, she stopped after word 3 and wrote a letter to her dad (about 5 sentences) and tried to get out of the word list because she had written that instead. i actually considered it. it was true that she'd written quite a bit, and that part of why we homeschool is to be flexible (and isn't that what i'm always telling her to do?) and i considered the possibility of a meltdown, and my avoiding a meltdown by giving in. but i held my ground. and she did it- eventually.

a few years ago i heard a talk from a wonderful psychologist who now knows zoe well and has given me hope when i was hopeless- and she said that with "these kids" we (parents, teachers etc) often will avoid situations that we suspect might bring out a meltdown. i was totally guilty of that- and actually had never official acknowledged it. i mean, i'd avoided using the vacuum or blender. i'd started buying pre-ground coffee. i'd not told her where her glasses were, but conveniently moved them to somewhere obvious- knowing she'd want to find them with out help. and i'd answered (OK told a little white lie) that i'd seen the dog we just drove by, when i might not have fully seen it- because it was so hard for her to not have us share an experience.
"but you needed to see that dog- if i saw it, you have to see it too!" i know there is some philosophical thing going on there- some epistemologic dilemma- it can only really exist if i saw it and my mother saw it.

but i've learned that each potential meltdown is a learning opportunity in disguise. and that avoidance is not doing anyone any favors (well, honestly, except for in that moment- which i suppose does count for something :) so i've learned to face them. to be willing to walk with her into those scary threatening places. to show her that i'm not afraid. because if i am, where does that leave her? eventually i'd love for her to walk into an active grinding, blending coffee shop that's being vacuumed, while wearing fully tagged clothes, and not feel like covering her ears, yelling and running away. but how will we get there if we avoid it all the time?

so sometimes i 'let' her vacuum, and with warning, after a lot of self talk and "making peace" with the vacuum- she'll do it- even with "the loud part". she can now laugh at the blender (to help ease the stress). and just say calmly- "i hate the sound of that coffee grinder- don't you?"

so it does work- meltdowns aren't the end of the world- really, together we can face the music and there is progress, sometimes in leaps, sometimes in bits.

it was all the staplers fault

lets just say- i knew we'd be in for it today. mike is in miami. it's raining- it's been raining and it's going to keep raining. and my barometer for how zoe will do today, showed - trouble likely.

these days when i walk the boys around the corner to preschool- she does her writing assignment. this entails copying a list of either spelling words or vocab words with their definitions- today it's the later. P.S. -it's thursday- and we've been copying the same words all week. how she does with this task is a pretty good measure of what kind of day we're in for. as i unlock the door, i whisper a small prayer- please let her be done with her words, and please let her have done a good job, and feel good about it- inside, she's playing and proudly announces she's done - phew! excellent!
"let's go look at your words!"
oh dear God-
she has basically scribbled shaky parkinson's like words all over the page- she's standing next to me smiling- "oops! i guess i was a little cold".
"do you think there is a better way you could have handled being cold?"
"i guess i could have gotten a coat on."
"yup. OK- lets do it again."
then began the half hour of dillydallying - she decides to sharpen her pencil- then every pencil in the box. she wants to apologize again for not doing good work. she wants to ask me some random question about some object on the desk. finally after i threaten to throttle her and tell her she can not get up until she's done, that she may not speak until she's done- she spends 10 minutes max and does very well.

i know it's not eating worms- but this makes me crazy. because she can clearly do the task- yet instead of 10 minutes- it was literally an hour of "work".

but, here is the good news- here is the grace-
6 months ago- this would have disintegrated into a total melt down mess. 6 months ago, she would NEVER have been able to sit down and and regroup and actually do the words- she would have cried and said she was stupid and thrown her pencil down. she would have been unable to pull it back together and move on to the next subject.
this is huge progress!!

how quickly we forget. and each time the words take an hour- its a learning opportunity- for both of us. the irony is we're both working on the same things- she practices getting it together- i practice getting it together. and when i can stop and see the progress- when i can get through my own over annoyance at the task not being completely in a timely fashion :) and when i can see that what's so much more important than writing a list of words, is being proud of yourself, of getting it together, or learning to try again when you fail then i'm so proud of her- because this is where it's at- where it needs to be.


and here's why we quickly forget. i knew it would happen! i knew it.
it just took a few hours.

i pull up in the car to pick zoe up from OT and see her in the hall, doing her "boneless" dance ie: this is my body's way of saying i'm extremely frustrated and i give up.
my response- oh crap- deep breath.
the therapist asks if they can have 5 minutes.
sure- i mean great- if you can work through this with her in 5 minutes-and i get a happy kid- fantastic, and good luck with that.
10 minutes. and out she storms, red-faced, pursed lips and stomping feet. as i suspected. i wonder what happened- kind of- but i kind of don't care- i really don't want to deal- deep breath.
" I WANTED TO FINISH MY PROJECT BUT THE STAPLER BROKE!!"
oh- now i get it, totally great reason to get upset and throw a fit and waste 3 peoples time and make your brothers wait for us as we're late for pick up. that damn stapler! in my calm -annoyed- but calm voice i ask her to get in the car so we can get the boys. and instantly - seriously- as if a blanket of warm goodness has descended on her- she says, "i'm sorry mommy- i just got really upset."

again- there is the grace- there is the progress. only i can't see it because
while i'm calmly talking to her in the way way back, through the rear view mirror, i'm having not-so-calm-images of this being the rest of my life. of her never being able to handle being back at school because if you write like you have parkinsons and you go to bits over a stapler- no one will want you there. and i'm envisioning her trying to have a job, but melting down because the office copier is stuck. and while i'm talking about choices- i'm thinking that zoe really should have been born to the landed gentry in victorian england where manners defined you (she is undyingly polite) and ladies had other people wash their hair, and dress them- so all her OT needs would be bypassed. she could sip tea and wear a shawl and go for strolls in the garden. when they didn't have staplers and copiers.

"mommy i think my head was just too full and it had to come out."

"what do you mean zoe?, help me understand what that means."

"i just don't know. "

"but if we could figure it out- we could fix it."

"maybe it's just part of 'my disorder'- maybe it's just me."

maybe she's right again. maybe it's about accommodation and adjustment, not cure, or fix. it's about the long distance run- not the sprint. rats. deep breath.

as we drove on, we talked about flexibility. we talked about our actions having consequences on other people. we talked about not having control over much of what happens in life- like broken staplers-(or having kids with learning disorders) and we talked about having control over ourselves and our responses to life. we talked about choices.

"mommy next time i'll make a better choice, next time i'll be flexible."

but will i? will i be able to have faith in her- going on and out into the world to accomplish what ever God made her to do- big or small? what if temple grandins mom had not pushed her - different not less. what if annie had given up on helen keller? my mom used to say that raising kids was like putting pennies in the bank- sometimes it feels like with zoe-i'm putting $10 bills into a magic bank that changes each bill into a penny- so much effort and it takes so much more time.

but if i peel off the layer of the stapler scene fear, and really look into my heart- i do see her doing great things- small possibly, but none the less great things, because she already does. and because look at her progress!

"Little darling, it's been a long cold lonely winter
Little darling, it feels like years since it's been here
Here comes the sun, here comes the sun
and I say it's all right"

no really- here comes the sun!!