the climb

i forget so quickly. 

i forget her challenge.  i forget that all the good days we have are little gifts.  and that they require tremendous effort on her part- and some fairy dust.  and when we've had a lot of good days, or even weeks, i begin to take them for granted.  i begin to settle into the false idea of a new normal.  i begin to live in this new place- i move in and get comfortable.  but then, unpredictably we'll have some moments.  and these moments don't jive with my new normal.  these moments are much more upsetting in my new place- even if they are relatively small moments.  so i get confused by her. i become frustrated by her, and angry and annoyed and impatient.  why are you messing this up?  why are we having this conversation? why have we not moved past xy or z?

i start hearing myself say things like, " but you're twelve!"  and "how many times have we been over this?" and then after a few days of this- i remember.

i remember that i've forgotten. her struggle. the global, pervasive, never-endingness of it.  i forget it's not grown out of.  it's not fixable.  it's not going.  i try to remember that it's not broken, but different. 

i go back to places i've been- the basics.  i go to the nvld website.  i read the list of challenges she lives with each minute.  i am reminded of how she didn't ask for this- that the way her brain works is not her fault.  that she actually copes very well given what she's dealing with.  i am humbled, deeply.  and then i become very, very sorry for my deep wrongness.  my impatience.  my inability to get it through my thick head.  the harm i cause by my lack of holding the tension of the opposites.  the tension that it can be a really good week- but she still has trouble regulating- that we can have no meltdowns- but her brain still struggles to get the buttons on her shirt matched up and through the holes.  that there is no wobbly voice but the steps to get ready in the morning are hard and take oh so much longer.  that not getting upset about someone sitting in your seat doesn't mean that you are not overwhelmed by the noise and number of kids and chaos of sunday school.

the list is long.  life is long.  and it feels longer when you don't move past certain check points that you'd expect you'd have move past by now.

and it feels longer when you don't know what you're hoping for exactly. 

it's like hiking up a mountain with no sense of where the top is, no idea how far you've come compared to where you are going.  so it becomes hard to know how to pace yourself.  once in a while you catch a glimpse of a nice plateau and so you run to it- only to be fooled- and the mountain goes on and on. 

mike can live in a place of just choosing the pace that works for him.  he settles in to the weight of his pack, the rate of ascent.  he doesn't need to look back or look forward except to make sure he won't stumble.  he's accepted that we don't know the height of the climb.  i envy this to my core.  because everything in me screams to know- how far? how much longer? what are we to expect? do we have enough water? or food? have we really come this far? what if we fall?  what if we get blisters?  what if we get so tired we can't ever reach the top?  what if the top stinks!  what if there is no view and it's so high that nothing grows up there and it's all dirt and rock and the clouds cover the perspective we'd have? 

the thing is, i'm not getting off this trail.  i'm not leaving my pack, and i can't go backwards, so what are my choices?  i need to settle in.  i need to find my pace- get used to the weight of my pack.  i need to trust in the God that made her and loves her more than i do.  i need to lean on my God of small things.

and i need to hope for the most amazing view ever.  but climb with my eyes wide open so i don't miss the beauty and the passion of life on the way up.

hope and ok with not

i just had a moment.  a moment of despair.  of what the *&^%&#* is going on here?
was it the email i got with the negative feedback on our home for sale by the 20th house viewer?
was it the fact that i was on hold with jetblue because they messed up my flight for my medical missions training course - my online booking somehow booked me for a flight in and out in one day- instead of the week i need to be there.  was it that i know it was a computer glitch and i know i wouldn't have done that- but somehow this internet error will cost us another 200$?  super.
or was it that zoe had a meltdown at the park because she couldn't find her friend when playing hide-and-go seek, and i had to spend 15 minutes helping her regroup in the car in 90 degree weather- explaining again how important flexibility is in playing- how she needs to try to read the confused look on her friends faces- to not get so angry- to not storm off and shake her voice and her body- to try to calm her inner turmoil so she can engage in the world as she seems to want to.

was it that at the sandwich shop i needed to sit next to her- to remind her to not lick the jam off her gluten free wrap bread- to not use her fingers to lap up the jam on the plate- to just sit and eat her food, while her brothers need no prompting- no reminding.

or was it that after almost two weeks of single parenting, especially her- i'm just running on fumes- and i'm tired of needing to do so much for her- to wash her hair- to put the rubber bands on her braces- to fasten her bathing suit top- to tell her to stop laughing forcefully and flapping her arms during a movie- tired of having to remind her of what to do- the order in which to do it- to keep her on task- to keep her from being distracted- to help her calm down when she gets stuck on a thought.  i'm tired of the unpredictability of each moment- and of the exhaustion that comes from wondering if these moments are for forever- what are we to expect out of her future?  out of our future?

interesting that her name means 'life' - like hello, get used to it, this is your life.  it is what it is.

coming home to old friends and family i'm faced with seeing her differences more glaringly.  everyone else's kids - who are her age or  younger- are growing and maturing normally- becoming themselves- doing things independently- and i feel like we are stuck, straddling the age range from 3-12 in one child.  and it's isolating.  it's depressing.  it's an awakening- or a great big reality check. 

she's different.
she's special.
your life is not normal.
it never will be.

what do you do with that?  how do you live in it?  how do you create expectations or goals or even hopes and dreams for a child like zoe?  what is too much to hope for?  what is too little? and doesn't that devalue her? what kind of a parent hopes too little?

i need to continually find that balance between accepting and hoping-but with out waiting for what i'm hoping for to happen. hoping with out needing to ever get there.  it's the waiting and the needing that mess me up.

last night i was up late with my dear old friend of 15 years who we are staying with this week.  she asked me how i think zoe is doing- what we expect for her- what we think will happen with her.  and after a long day, in a long week,  sitting on her couch- i just let my guard down and said in full disclosure- i just don't know.  i don't know anything.  i don't know how i think she's doing because one minute i think she's 'better' and one minute i can't believe she's done something and the inconsistency makes me crazy.  i said 'i don't know' because it requires a comparison of some sort- 'better' than what?  'worse' than what?  i don't know what my expectations are- i don't know what my hopes are- i don't know what to expect.  i know what i'm afraid of- i know what i want for her.  but do i hope for that? 

and this is where the stillness comes in.

i'm sitting here, on hold with jetblue- hoping not to be one of those crying basket-cases on the phone- but feeling like this might be the moment that i fall to bits.  that this might be the moment that i let down my hair and explain to some random telephone strangers all the woes of my life.
...but i have no money to pay the difference! i'm leaving in a month to be a missionary in africa!
....but i have a child with special needs and my husband's been away and i'm worn down thin!
...but i'm really tired and i don't need this right now!

and a feeling of complete comfort washed over me- a feeling of stillness- that collected all my bits and stuck them tightly back together.  and i realized that 200$ is just not that big of a deal.  that it's ok to be tired.  that i am not consumed.  i am not in bits.  that there is hope- even if i don't know what it looks like or sounds like or how many times i need to wash hair. 

that i just have to live it- each inconsistent moment at a time-even stumbling and tripping and falling.  that there is no 'answer'.  that 'i don't know' is OK. 

stone walls

sometimes you don't appreciate a place until you leave it.  that for me, is new england.  i'm loving being back here- to the warmth and the salt and the granite rocks and the longness of the summer days and the old friends and the crusty sameness.  the family-owned businesses that remain after 30 years- the metal siding houses next to tiny wooden saltbox houses with plaques that say 'circ 1802' and converted barns and two lane highways and the red sox- all of it- i'm loving it.


i love driving around and seeing, just off the road, hidden slightly in the tree overgrowth-the stop and start of stone walls.  markers all over new england of a past- an example of form following function- boundaries of stone- rocks removed for field tilling- for vegetable growth- for sustenance- placed thoughtfully to define an area- an area that might be no longer- but the wall remains- the stones placed like a monument- now part of the landscape, stay.  i didn't notice them when i grew up here.  i walked on them- added to them- rearranged them- hid things in them- but never thought about them.

today i was tired of being a single parent.  i was tired of saying 'sit still and eat', tired of having to remind people to get dressed, tired of not having back up- and i hadn't even woken up zoe yet- zoe my slowest get-readier- zoe who likes to mosey- to take her time- to chitchat often at the most inappropriate and inconvenient times.  so i tried to get ready- to finish the boys and get her breakfast all laid out before waking her.  i tried to be patient when she took forever to finish her medicine- when she explained that she was just grumpy because i'd woken her up- when she asked from more bagel before even eating the one on her plate.  i explained, calmly, that after she finished she needed to go straight upstairs and get dressed- that she couldn't and shouldn't do anything else before being dressed- that i needed to trust her- that we were all trying to get out of the house in 30 minutes for church.
'okay mom!  i know!'  (said as if it's absurd that would need to spell it out- as if she usually has it under control) and i went upstairs to get dressed.

but the margarita glasses on the dining room table were too much to pass by- what if she stacked them?  what if she made a sculpture with them?  how would that look?

and it's times like this when i really wonder what- if anything- goes on in her brain?  is she thinking 'this is probably a bad idea but i want to do it anyway?'  or 'i know i'm supposed to go get dressed- but i'll just do this first'?  or is it just the simple not thinking- just being- there, in the moment- as if i never said anything- as if we're not going anywhere- as if life can just be lived that simply- that obliviously.

i only know this happened because the tower of margarita glasses came crashing down and smashed into smithereens sending glass shards into three rooms- on table, chairs, floors, rugs, everywhere.

and it wasn't that i was mad at the broken glasses, or even at the 15 minutes it took to vacuum it all up when trying to get out the door- it was, it is, the unreliability of my life- of our lives.  it is that i can't depend on her to follow simple directions- i can't depend on her to behave almost 12.  it is that reminder that her brothers at 6 and 4, are more trustworthy than she is.  and that inconsistency creates stress.

i tried to tell her that- but i was mad.  exasperated mad.  and i used too many words- words like 'i can't trust you'  and 'you're more work than your brothers combined'.  words that i hope and pray flitted out of her brain like my instructions had earlier- words that i hope and pray didn't settle in to damage a self image. because it's much easier to clean up broken glass than a broken person.

so after church and after the church picnic, i went for a run and i ran past many stone walls- all different sizes and heights and levels of care and maintenance.  i thought about the fields i ran past- now beautiful and grassy and gardened- now with out those stones.  i thought about how hard it must have been to dig them out- to lug them over to the side of the property- to stack them- to try and place the flat sides on the top.  i thought about the work involved and the time- the slowness of the process and the lack of immediate gratification.

life is full of stones. 
and what do we do? leave them?  move them? stack them?
do i make something beautiful with them?  something functional?  something significant that will stand through time- that will be a reminded of what was- of hard work- of goodness despite? 
or do i just complain?  do i trip over them and wish i had a different piece of land.

i know i do a lot of that- tripping and wishing.  but i want to settle into that place of accepting my land- my life- my girl.  i want to stay in that place of moving the stones gently- of placing them carefully- of preparing the land- of making the garden. and in the process, i want to use those stones to build a wall.

grace rains down

somewhere there is a lesson in here.  but i can't find it yet.

today started with a glorious half an hour with zoe.  she floated downstairs dressed and pleasant, ate her breakfast and gave everyone good morning hugs.  i was pretty psyched.  off to a good start.  but, as soon as it was time to do school, we were back in sticky-land.  i was trying really hard to keep my zen- to not let her funk affect me.  i didn't want to yell. after she finished her copy work, i needed a break.  i decided it was going to be one of those slow days- i decided not to push against resistance.  one of the things you learn in medical residency when you're putting a line in someone (any kind of a catheter into a vein or artery) is not to push against resistance.  you pull back, re-angle and gently try again.  when placing a catheter if you push into resistance, bad things can happen.  same with zoe- it can backfire-so i let it go.

a few hours later, she'd placed all 50 of her stuffed animals and dolls in the hall, as if they were having a meeting.  i told her if she wanted to watch a video, she'd need to clean them up.  i even outlined what that would entail.  when i returned from an errand she was watching a video, so i went to check the hall.  she had done it, but by dumping it all on her bed.  i told her to go back upstairs and finish the job.  well.... you'd have thought i'd asked her to clean the entire house with a toothbrush. it was ridiculous.

i'm sitting there, trying to understand, how the wind of her spirit can turn so quickly, how we can start somewhere peaceful and end up with her screaming like a baby. and i'm left feeling like someone has taken a vacuum to my insides- hollowed me out- i am empty.  trying to keep my emotional distance- but finding myself sucked into her vortex.

then i got an email.  actually it was a facebook message from someone i went to college with.    someone who i did 'lavida' with (see post- http://bestillandknowkw.blogspot.com/2010/06/be-here-now.html) lavida is an outward-bound-ish trip.   10 days of hiking in the white mountains of new york and the trip ends with a 10 mile run.

she wrote to thank me for encouraging her on that last part of our venture- our 10 mile run.  it took me a minute to place her- to go back 20 years and remember.  but i did remember.  i remember that she had an amazing attitude and great determination- but at that time in her life- she was not a runner.  i wasn't either- well not a long distance one.  but for some reason running with her and focusing on 'helping' her along- gave me the perfect distraction from my own pain- and enabled me to finish the 10 miles too.  she wrote that since then she's gone on to run 4 half marathons and a triathlon.  she is now, a runner.    she said that my persistence, and faith in her, impacted her well beyond the 10 miles.  she thanked me for being a light in her life so many years ago.

how often you get a note like that? i mean it felt like i was showing up at my own funeral.  it reminded me of so much more than that trip and that run down a mountain.  it reminded me again of the interconnectedness of our lives- how we impact each other and don't even know it.  it also reminded me again of the little things, the little moments in life, of our words, those that can plant themselves deep in us and sprout beauty or root down deep and choke us years later.  it reminded me of reciprocity. she was thankful to me, but i was so thankful to her- because together we got down that mountain- we each brought something different- she needed encouragement, i needed someone else to focus on.

it also reminded me of the importance of patience and determination, of the possibility of change.  of the unexpectedness and surprise of life.  it made me wonder how different her life would have been if she hadn't finished the 10 miles- would it be different?  maybe not- but my day would be different with out her return words of encouragement today.

i think the lesson is - life just is- so run it and see where it takes you.
it will surprise us- sometimes in good ways, sometimes in not so good ways.
it's monotonous much of the time.
but, we are building cathedrals- the things we do can have lasting impact.
so, i shouldn't be so bothered by the quickly changing winds of her mood- or the raining coolness of a day i wish were sunny.  i need to remember not to push against the resistance in life- accept what is- run through it- and encourage someone else on the way.

and let the grace rain down.

killing me softly

that's how it felt this morning.  she was killing me softly. or maybe slowly- but none the less, killing me.

i might be being overly dramatic- it's possible- but do we REALLY need to have the conversation AGAIN about how you're bored with copy work, how you think it's stupid, after you've sat at the table making scribbly letters for 15 minutes.  Really? it's two sentences to copy - how boring could it be?

it was one of those mornings.  and the thing is- i mildly care about her learning to write- i mean- it's more important that she learn to type- but i care about her learning the other things that go along with copy work.  things like- time management, attention to detail, staying on task, sticking with it even if you don't like it- having pride in your work.

maybe it was a morning like- the wii game (see post reconnecting the circuits) where her processing was off- but i think not.  because after many patient attempts to cajole her into doing her work- including a) the understanding sympathetic approach, b) the humor approach, c) the understanding but firm approach- i was left with d) DO YOUR **#***!!##**  WORK!!!!.  and the unfortunate part is, that's what always gets her to snap out of it and become full of remorse and in 15 minutes she's finished her copy work and done her math- and done them pretty well.

and this is what is killing me softly- or perhaps loudly.  i don't want to have to yell at her- i don't want to be that person.  even more, i don't want to establish a pattern where she responds only to anger- where she needs someone else to motivate her- and in a negative way.  i don't want a pattern of her requiring feeling bad and guilty and ashamed- to get it together.  because it can become that all those negative feelings - form her self image.  yikes.

the funny part of this was the copy work itself.  it's a quote that says :

"People are successful at the things to which they devote most of their time and effort.  It's a question of deciding what's important in  you life and working hard to achieve it."

i think she'd made her choice.  and copy work wasn't on her top 10.  unfortunately googling powerpuff girls won't get you very far in life.  (which i impulsively shared with her).

i asked her why it took yelling for her to respond.  she didn't know. i told her i was done yelling.  she can just sit and do it until it's done- the consequence of taking a long time and doing silly letters- is that she'll have to sit there longer and redo it- not that i would come through to realign her with shouting.  i told her that you can lead a horse to water but you can't make him drink.

she gave me the confused face. and i was again reminded of the difference between our brains.  she is baffled by metaphors- she is literal- concrete- specific- so why am i talking about horses and water in the middle of this conversation? 'killing me softly' would be a challenge.  i am the complete opposite- to a fault.  i use and abuse language and i love it.  to me, words are magical- you can transform them- sometimes even make them up- you can manipulate them - take them out of one context and try them in another and it can work.  or get  you in trouble.  words are musical and sentences - well, you can hide things inside of them.  there are layers of meaning- in the order of our words, in the spelling, in the emphasis, in the punctuation.  i love this.

but i forget this all the time.  i speak to her in metaphor- i use random associations and make crazy links between things that probably don't go together.  it's just who i am and it's hard for me to remember that this use of language is hard for her to understand.  but maybe it's good- i usually explain it- i usually don't get frustrated- i usually can laugh at myself for generating the silly phrase or association- i don't criticize her for not knowing it- for missing it- i can't expect people to climb inside my head - especially zoe.

right now it's warm and stormy.  i'm again outside on the porch.  the trees are wiggly, the sky darkening- i can smell the rain coming and the air is talking.  before the storm- when it was a calmer, sunnier kind of beautiful- i made the kids go out and play for an hour- i told them i didn't care about homework- i cared about them moving their bodies and using their imagination- i told them to make something, find something new, build something, fight something, climb something.  i told them to lie down on the ground- to smell the earth- and to look up- through the leaves on the holly tree that holds her leaves year-round- and see the patterns of the sky- i told them to pay attention. to embrace their worlds- because it's in those moments- under trees or up in trees under the sky- that you figure out what's important in your life and what you want to devote your time to - where you should spend your energy. outside is the magic.

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.