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.

salt water

it's saturday, which means yesterday was friday, and i saw patients and taught fellows and went to meetings. one of my favorite patients came in- the one who is my age- the one who is dying, and is my age. she looked worse than i'd ever seen her- thin with a giant belly and legs filled with fluid, moving slowly with a new cane- and slightly yellow. i wanted to cry. there is something about caring for someone who is my age and dying that undoes me. i had to tell her it's time for hospice. i had to ask her where she wanted to be when she died. things we'd put off, needed answers. things she'd been thinking about, needed a voice. i hate when people ask me how they are going to die- what they are going to feel- what will happen to their bodies. it makes me feel like a phony. i can tell them what i've read- what i've seen- who knows what it really feels like. i asked her how she felt in her heart. she said OK- she's not scared- she doesn't want to be alone- or have pain. luckily she doesn't need to be alone or have pain. i hated saying goodbye because i won't see her for a month- or maybe never- so i hugged her a little longer and bit my lip. i'm leaving for uganda in 5 days- and will miss three fridays in a row. i'm afraid she won't be here when i get back. i'm afraid i'll miss her ending, and that hurts my heart.

it made my problems seem far smaller than they've seemed in a while.

we'd just got back from the beach at 10:30 the night before. the car trip- including a vomiting kid, a poop accident and a crying infant- and 9 hours in the car with 5 small children wasn't the hardest part. it had been a very up and down week for zoe- and thus the rest of us. it had been a week of me feeling really sorry for myself. of asking a lot of "why" and not saying enough "thank you". a week when i remember that as far as we've come, transitions remain hard for her, and that the beach which is full of sand, and noise and waves and salt and hot, bright sun, and unpredictable games to be played with other children, and sharp shells and birds- is asking a lot of a sensory overloaded kid. and i felt that pang of 'life will never be normal for us so why do we pretend'

so yesterday, i came home and ran- like forest gump -away and farther away- even though it was 100 degrees- and full humidity. i ran out my patient and friend's premature dying- i ran out my beach week with zoe in mild crisis mode- i ran out my inability to deal with my life in the put together way that i imagine i should. i ran until my water bottle was finished and i had nothing left and i couldn't cry because my body needed all the water and salt it had. i ran until i was thankful for the ability to run- for the gift of being able to care for sick people, and for the ocean and sand and salt and that i'm not overloaded by it. until i was thankful for zoe's ability to go into the waves sometimes, and also to know when to leave. and for the fact that life is a mystery and we don't know where it will really lead us next- but the path behind us helps prepare us. and the miracle that in all of it- we can find peace.

the bloody lip, the vacuum and the grace

today it was 103 degrees.

zoe was slightly sticky- mostly just crabby- low threshold land.
it's a hard place for her to be. and for me. for her i imagine it's hard because no one likes to be in a bad mood. for me it's hard because i'm waiting- for her to teeter off and fall into the bad place.

it might have been a good idea to play it safe. to stay in the air-conditioned house and watch movies. but i have this thing about not watching t.v and movies when it's beautiful and sunny, even if it's 103 degrees- it's like i feel guilty.

mike and i went to zion canyon for our 10 year wedding anniversary where we climbed up angels landing to renew our vows. the next day it was hot and dry and about 100+ degrees, and we had this amazing lodge room with a view of the canyon and a balcony and all i wanted to do was lay in that cool bedroom and watch a movie, but i was driven, compelled, to be outside. mike thought it was so funny that i couldn't allow myself the pleasure of just choosing to be inside and watch a movie for a few hours. i decided he was right. but it totally felt like i was doing something wrong- breaking some unstated, universal rule.

so anyway- i couldn't just follow her cue- beside the boys really wanted to go to the pool. so we did. now because i've opted for the "ooops mommy forgot the floaties" theme in order to encourage swimming, it means that i've got to be "tanto jump on it" all eyes on all kids all the time- and it's exhausting. add to that zoe having an off day- and my old, pre-nursing three kids- bikini top trying to fall off, and it makes for me wishing i had at least another pair of eyes and several more arms.

zoe found some kids to play with. they decided to play marco-polo. zoe had never played this before, but didn't tell them, and so attempted to follow along, which immediately resulted in her becoming the 'marco' role. then she was really lost- didn't know about closing her eyes, and appeared to not understand that she was supposed to tag someone. i kind of wanted to go and help her- but couldn't leave the boys. and i was kind of glad i couldn't leave the boys, because i didn't want to interfere.

that line again between teaching, vs rescuing, vs interfering.

the next thing i knew she is crying, because she apparently learned to close her yes and collided with one of the kids heads and is bleeding from her lips or somewhere- the dangers of braces. shes' really upset, and scared, and hurt, but mostly i think it was the tipping point for her. she had a moment of expected decompensation/ regression and i dragged them all out of the pool drooping bathing suit and all.

i thought about leaving. returning and going with the TV/movie plan- after all we'd done the sun thing. but i looked at the boy's faces and i just couldn't do it.

so we got some popsicles and had a break.

back in the pool- zoe found an old acquaintance from last summer who was there with her two friends. she did well for a while but then the brain pulled a switch and she got upset that she didn't know the friends, that she didn't know that any of them were going to be there that day, miss firing circuit. tipping point.

luckily it was time to go anyway- thank God for that already issued 5 minute warning.

she screamed -one loud scream on her way to gather our stuff.

i took a deep breath and tried to remember that this isn't about me. it's about her. helping her understand - helping her get it. anger doesn't really have a place here- or at least it won't be helpful. i kept reminding myself of my friend erin, who laughs and loves her life and rolls with it, six kids and all. i need more laughter i thought, even it the yuck parts. and i need to roll with it.

and then there it was.

leaving the building to get to the garage was a large vacuum, and it was on.

vacuums are the remaining loud inanimate object that can unwind zoe.

it was even 'the loud part'. the part that cleans rugs.

i thought fo' sho' zoe would haul off screaming with her bloody lip and all- flapping her arms and using that wiggly voice. but she didn't. she looked at it puzzled and said, " is that the loud part? because it doensn't seem so loud."

we went to the car. we talked about feelings and actions being different. we talked about how our actions affect others. we talked about being flexible and not so rigid. we talked about not screaming, but how well she handled the scary vacumm.

the grace was in my friend erin's example - and the grace i was given to remove my emotions from this situation and be: a parent. not an angry person who needs therapy because i'm so broken by having a child with special needs. (although i definitely would benefit from some therapy, again :)

the grace came as stillness.

the princess and the pea

of my three children, only one of them doesn't really care what he wears these days. the middle one. he likes me to pick it out, he gets dressed- life goes on. the little one, throws a fit about each item- and just when you think there is a pattern or a favorite- he changes his mind. today he put back everything i'd laid out- including last weeks favorite shirt, and the spiderman underwear (he wanted diego today). and then there is zoe. bless her heart. she cares what she wears in her mind- and then her body has to weigh in too. she'll pick out something and then need to change because it's too scratchy, too tight, even though last week it was fine.
you would think that by now, i would be used to this. you would think that i would not longer care- but no. somedays it just makes me crazy- because that shirt is soft, and i've cut the tags out of everything she owns, even the remnants of a tag are out with a seam-riper. HOW can it still be scratchy???

today, as i'm helping zoe change her shirt for the third time, and exclaiming that it's almost impossible for this shirt to be uncomfortable, and she's apologizing again for the the way she was made, and i'm feeling like the worst mother in the world again, i remembered the story of the princess and the pea. that the prince who'd searched high and low for a real princess, could only be sure that the bedraggled girl who showed up at his door,was really a princess because she felt that pea beneath twenty mattresses. because she was so sensitive. over-sensitivity as a sign of royalty - not a sign of weakness or something to be frustrated by. but of pure beauty and truth. and despite her appearance, her sensitivity won his heart.

and true or not, it softened me. and i apologized, again. we found something that worked and went on with our day.

and the prince and princess lived happily ever after.

the grinch

one of the things that's hardest about having a kid with nvld is that it's kind of the opposite of "Groundhog Day" (the movie). everyday when i wake up- i have no idea how zoe will be. there are days when the planets have aligned and life is as sunny as can be and i wonder if maybe she doesn't have a learning disorder at all, maybe i've been all wrong. but then the next day even, all that goes out the window and she'll be completely off. like someone smeared peanut butter all over her brain, and it's just not working and she's ultimately frustrated, and honestly, who can blame her?

last week was a perfect example- monday, was a pretty good day, especially because mondays are classically our hardest. tuesday was rainy and kind of awful- math wasn't coming, she couldn't remember the names of the state capitals, she melted down over not being able to spell "piece" (i can barely spell it- the i-e thing!) and reading was a challenge. wednesday was a dream! her handwriting was excellent, she was focused and determined- she did piano and typing independently- she thought it was funny when she forgot how to spell a word- and she shone at math! and thursday was kind of like monday. if we could figure out what it is that makes a wednesday, we'd be set. we'd both be set. because try as i may to reign it in, i'm like an amusement park mirror- i take where ever she is and massively distort it. i over react. i get frustrated with her frustration. i even get frustrated at her inability. "what do you mean you can't can tie that? you did it yesterday?"

oh- right, that is the problem.
oh right and it's not your fault.
oh yeah- and you feel really bad about it too.
oh right, this is actually, YOUR LIFE.


people have said that having nvld is like trying to write backwards with your non-dominant hand while on muscle relaxants and living in a foreign country. imaging your sensory system is off, so you receive signals of pain when you're having your hair brushed, the vacuum sounds like being on the runway of an airport with out headphones, and when you close your eyes you feel off balance. now imaging that you can't block out the ticking of the clock while someone is talking to you. so now you don't really know what the person is saying, because not just is there a clock, but also a dog barking outside, and three other people taking at the table next to you. now its you're "turn" in the conversation, but you've missed part of what they said because of the distractions, and the persons tone of voice is confusing to you, you aren't sure if they're joking or mad at you, and their facial expression is also unclear. so you do what's easiest- when it's your "turn", you just talk. you talk about what you know- american girl dolls or harry potter or whatever comes to mind even if you just said it. this of course confuses the other person, so their tone and expression are even more difficult to read. you're not sure what to do, but you have a good intuition that this isn't going so well, so you internalize that and it begins to chip away at your self esteem. and then after years of this, you become really stressed out and anxious when you're in social situations- or places where you know you'll be overwhelmed. and it's hard to forgive yourself and accept that this is just who you are. it's hard to understand why God make you this way. it's hard to love yourself. and it's unfair, really unfair.

sometimes in these moments when i think I can't take it any more- i see how absolutely unbelievable she is. and i'm so humbled. i think i know her so well, and i do. but i have no idea of what it's actually like to be her. she has to deal with the inconsistency of this every minute of everyday. she is the one who wakes up and doesn't know if today she'll remember the motor sequencing to tie her shoe. if words will come out easily or if she'll struggle with saying what she means. if math will make sense or not.
when i can get it though my thick head to remember this,
my small heart grows three sizes that day and i ride triumphantly on my sleigh, down to whoville where i myself, can carve the roastbeast.