memorial day

so it's memorial day and we had a fabulous weekend at the lake, in the mountains,  but the last several hours have been ruined by a 'sticky thought'.  and i'm embarrassed to say- it's not zoe's, it's mine.   i can't tell if it's really dumb or legit- but either way- i've allowed it to consume me.  maybe it's less of a sticky thought and more of an inflexibility. 

i decided sometime this morning that i wanted to get home while it was still light- that i wanted to be able to relax for a bit - that i wanted the kids to get in bed at a normal time- so we had talked about it, and we'd decided to leave at 4pm. 

well things happened and we were distracted and soon it was 4pm and we hadn't left, we hadn't even packed the cars.   then mike did the unthinkable- he told the boys he'd take them swimming once more before we left- and in the hot tub.  now- women know what this means.  this means changing the boys into swimsuits, life-vests, sunscreen- trekking down to the lake- swimming- then dragging boys out of water who don't want to go- changing out of wet bathing suits- having everyone go to the bathroom- finishing packing- gathering snacks and the dog, and getting in the car.  women know this means another hour and a half before 'go time'.  women know this means more whining, later bedtimes and thus more whining tomorrow all day.  thus my sticky thought.

well- i decided- i want no part of this- we have two cars- zoe and i are leaving.  so we did.  and i stewed on the road for almost 3 hours.  it wasn't until we were in atlanta and almost off the highway that it dawned on me that i was being just a little ridiculous.  that i was behaving a little like zoe.

it was a bit of an 'ah- hah' moment.  i was able to see that when you are in that place of utter annoyance over plans not happening as planned, that you can get so caught up in the pure spiraling irritation of it- that you loose the ability for rational thought.  OK so the kids go to bed an hour later- so the swim suits are wet on the way home- so people may be cranking in the morning.  it's just not that big of a deal!

and, it's memorial day.  what a wack thing to get hung up on. 
on a day when we think of and celebrate those who have died in service to our country. when we should think of those who have lost loved ones in service.  which makes me think of all those serving and those who have served- our veterans- my veterans.  a day when i should be so acutely reminded of the big picture- of what really matters- and leaving at a different time then planned, should roll of my back like water on a duck.


now we're all home- the kids are in bed and it's 9pm- i'm thankful for those veterans who gave their lives- and who's day of honor helps me remember the things that really matter- and those that probably don't.  but- it's another piece of insight into zoe and her great spinning world.

Greeting from Uganda

zoe, mike and i are in uganda- literally.  not like in the first posting ever, where i re -write "landing in holland" to be "landing in uganda- the experience of raising a child with special needs" - but literally, uganda. 

we got here after one short flight with the boys to boston, to drop them with mikes parents; one long flight to amsterdam, and one long-er flight to uganda, followed by two hours of customs and diesel fumed car rides in the dark on dirt roads with few head lights but lots of traffic.  we arrived to the little guest house at the uganda christain university, where pinapples and toast and tea awaited us. where we were welcomed by birds that caw like monkeys and bougainvillea in every color. and despite thousands of miles and planes, trains and car rides, despite other languages and cultural differences and not having a real shower, the toughest thing about being in uganda this time, is the same thing that's hard about atlanta- zoe.

why am i surprised? really.  did i think the over the ocean flight would de-stick her? or that we'd magically go back to last time we were here with her, when she was 4 and just retreated into her own mind to escape her overwhelm?  i think i was experiencing magical thinking. 

right now mike is in the other room with her discussing our dinner with her new friend michelle- a beautiful 10 year old ugandan girl- an orphan recently adopted, who has clearly experienced much more loss than zoe has in her life- yet- she has her brain, which appears to function normally.  we had her over for dinner tonight and zoe launched into a conversation about servants in 1904-which we tried to brush under the rug.  she had already spent a while showing  michelle her ipod shuffle, and telling her about american girl dolls, how expensive they are, that she has 2, and then apparently tried to explain the civil war.  someone please teach me how to teach a class on the subtlies of cultural competancy to a child who has no, and i mean no, innate awareness. 

i mean in some ways, God bless her, for jumping right in.

hi i'm zoe. we're both 10, and instead of discussing what we like to play, i'll point out that i'm a white american and you are a black african and then tell you all about the intense and horrible history of race relations in my country, but forget to report how the civil war ended or how we believe things ought to be, and how far we've come. 

but really, when you try to dissect out what the human brain does naturally, how it absorbs and processes and intuits with out being taught- i'm only once again convinced of and humbled by the God who made us. this stuff isn't supposed to have to be taught! 

but this isn't the hard part.  the hard part is the hours (literally) of discussions we've had about her unarticulatable frustration with this inability.  her "I KNOW!" must really be, " I WISH I KNEW!" but she can't say that.  and how can you get mad at someone for what they just don't get- yet it is so maddening, especially because none of it is isolated- each moment for me has a past and a future.  so it's especially hard and important for me to be here now.  because in the crass words of my first boyfriend, "if you have one foot in yesterday and one foot in tomorrow, you'll just pee all over today".

so around the world- the moon is the same and our lives are the same- only with out two adorable little blond heads.  and with out a run today, i can still say i'm thankful.  so thankful for being here- for being able to go  back to the clinic i love and help out, for connecting with friends who live here, for having this time with mike and zoe, to have the hard talks, the time to let her cry with out having to rush off and go somewhere, and a chance for her to experience a different life- and learn from it.

maybe we can re-write my old friends words, "if you have one arm in yesterday and one arm in tomorrow- you're ready for a hug today." 

thanks for listening.

provisions

it was a day.

beautiful sun, a breeze, not to hot- the kind of day you're so glad you're alive.

it was a day of growth.

of the pendulum swinging and ending up in the right place. a day of grace. a day when i went to my dark place of abandon and then returned- stronger for it.

things were good until about noon.

we'd been at the pool for an hour or so- zoe had made a new friend named zoe who was learning how to swim. she patiently taught her- and gave her confidence and encouragement and the little girl did it. everyone was so happy and they swam around the pool together. it was good, perhaps too good. finally the boys were hungry and tired, but zoe decided she wanted to do a cannon ball. i don't even know what exactly she meant but i knew she'd never done it before and that by the sound of her voice, we were doomed. she was hovering over the side of the pool, toes curled in anxiety, flapping both wrists, as subtly as she could, and doing the self talk thing- "ok- you can do it, just move to the edge..." then flipping into the panicked "mom- am i going to hurt myself?" follow with "don't tell me - i KNOW what i'm doing!". i tried for about 15 minutes to 'help' with out helping. to be supportive and appear carefree, while i'm walking on eggshells- because she was beginning to unravel. calmly i told her that in fact we needed to go and that she was moving quickly into that place where she didn't want to be. that made her mad- and gave her something to channel all that negative energy into- me. she began to cry loudly and expressively that she was always the only one who can't do things. that she feels so badly that she can't do a cannon ball, that she NEEDS to do one now. that we CAN'T leave. that she WON'T leave. and the scene began..... her little brothers sensing the tension, obediently get out of the pool and get their shoes and towels.....people stare as her voice escalates and her frustration grows.... i long for my "she has a mild form of autism " sign, and acutely feel that pull between anger and pity and sorrow and the fear that this will get progressively worse. her little friend the new swimmer and her mother look puzzled and slightly anxious as well. and i'm hating it for her. for her overwhelm and her challenge. for not being able to get it together and just let it go. for the boys who are stuck with having "that kid" as their big sister. that kid who has fallen to bits.

and i want to cry because i've gone back to last summer, when i couldn't go to the pool with out this happening, and i've gone forward to tomorrow night when we're meeting people for dinner at the pool and i'm fearing this cannonball obsession all over again- and i'm exhausted by all of it, and thinking why me-poor me-poor, poor me.

the problem is, it becomes timeless. one 'little' incident, has histories and futures woven into it.

on the way to the car- i resolved that i couldn't do this anymore. that i needed to go back to work. that she needed to go to school- any school- maybe boarding school- in another country. i decided that i am no longer the man for the job. that i was already going to need years of therapy- and that even then- i may never recover. in my heart i yelled at God. i shook my fists. why is this so blinking hard!!! when will this ever end????

i was deflated, defeated and depressed. i put on my sunglasses and cried on the way home. zoe asked if this was because of her non-verbal learning disability. jude replied, yes- that is why you get sticky thoughts (the 5 year old therapist)- followed by saying, "and i have a yes-verbal learning disability" (the opposite of her) at which point i had to laugh. but i was too busy making my mental "i hate list" followed by my "i'm thankful list" which was much shorter, and i realized i had work to do.

when we got home and had lunch and the boys went to nap and zoe went to read- i got down to business- to what i do best- solve the problem. the left brain went into high gear and i got on line. i found every special ed school in the atlanta area and made lists, looked at websites, and made calls. i made an excel spread sheet and calculated the cost of school and what i'd earn going back to work. i felt productive- i felt hopeful- i felt in control- the opposite of how i felt at the pool.

so i ran upstairs to zoe and put it on her.

"zoe, do you want to be home schooled?"

desperately wanting, in that moment for her to say "no! thank God you finally asked. i want to be with other kids and teacher who's not nutballs!"

but i got, "mom, i'm reading!"

i thought about calling mike - sharing my data collection with him- venting about the pool/cannon ball episode- surely he'd see the light.

then i realized that i needed to just be still.

that acting or reacting out of fear is always the wrong choice. that much of my life i rush and re-act, i get pushed to a point and make a move out of fear or i put it on others to reign me in- usually mike. usually i make him do my dirty work. present him with my angst, and my hairball plan to get rid of it- and let him be the calm voice of reason. which sets up the dynamic of him as my saving grace and me as the wild overwhelmed scatterbrain.

but not today.

today, i reigned it in.

today, i was able to sit with it, alone. and in the stillness, i found what i was looking for. the answer was already there. the decision was made- by me. i am going to home school again next year- as scared as i am- because i love her, and we're not done.

"Be as a bird perched on a frail branch that she feels bending beneath her, still she sings away, all the same, knowing she has wings."
victor hugo

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.

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.

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.

begonias and the little agonies

sunshine and little buds and flowers are everywhere and i'm feeling lucky. i'm feeling blessed.  because last year-this season was so bad. so hard. so dark, even in it's springness.  an old friend is in a dark dark place today- with her little child who is suffering.  he has similar challenges to zoe in some ways- but right now his are eating him up-and his family- who suffers along with him.  i've not been down their exact path- but i know that place of hopelessness and fear- where they have been living for months- that place of utter exhaustion and confusion and guilt and anger.  the crawling to Jesus.  i remember so well.  and i will be back to that place many times again i'm sure- because life brings us all there at some point or another, especially those with special kids.

when i first started "being home" i had all sorts of expectations for myself.  to suddenly jump into the ultimate mommy role.  part of this was genuinely soul felt and desired, and part was a type A personality thing.  i remember last june in the evening, after a really long and hard day with zoe, i had decided to lug the three kids to the market to buy food for dinner and the appropriate makings for “rainbow cake” which i’d convinced myself i needed to do as a project to be a good stay at home happy mom (inspired by meg duerksen :).  and i needed some white wine- for sanity.  the boys were in the cart – the special spaceship cart with steering wheels- and i had a list- and zoe had her mind calling to her over and over.  she was just in that sticky place of no return.  overwhelmed by the amount of stuff, the background noises, she couldn't stop asking for everything, and i mean everything in site, and in a very panicked voice.  at first i got annoyed.  then i ran into a neighbor and remembered my manors and calmed down.  i  managed to get through fruits and vegetables and the bakery with only an extra avocado and some peaches.  (she doesn't even like avocados!) in the flower section- zoe presented  me with an 18$ small bamboo plant with a dangling mini-disco ball and a dead teacup arrangement for 8$.  i had myself together, ooed and ahhed over them and explained while she had great taste :), we didn’t need any plants.  next came the large lily plant- again, complements but please put it back-
"daddy hates lilies"
" why?"
"they smell like funerals."

 then came the sunflowers- i could feel my blood pressure rise- really- i now believe you can feel that depite my medical trainings belief otherwise.  finally, i saw some begonias for $3.99.

“ zoë ", i said, “ you may pick out one of those begonias in any color and we can get that”. 

on one hand feeling relief that we’d satisfied some unquenchable idea, but also let down that i’d given in and
we still hadn’t gotten to the part of the supermarket with aisles!  with begonia in tow, she wanted CapriSun juice boxes, (we have apple ones from Trader Joes at home).  then some random Mexican sauce- (she doesn’t like Mexican food).  each time i said no was met by a dramatic exclamation of how unfair it all was and how i was mean and then followed by many whinny "but why???'s" 

 then we approached the dreaded cereal aisle- which i’m convinced is put there to test all parents with children under 18.

"no you can’t get cookie crips, or frosted flakes, or lucky charms or sugar smacks or anything else that is not on the list!!!!!!"

 i had had it.  seriously, i wanted to rip that begonia out of her sweaty little hands and wring her neck!  she knew i was mad. she held the begonia up and literally hid behind it in the wine aisle – i’m sure a sure sign of likely parental misconduct- especially in the alcohol section. 

 finally we arrived at the fish counter.  i was trying to buy tilapia when she noticed the lobsters in the tank. 

“excuse me sir? are these lobsters happy or mad?”  oh here it comes...

 “well, probably mad, because they’d rather be in the ocean.” 

“ well then I think you are a mean man- a mean, mean man! keeping these lobsters in this tank!”  she shouted.  people were now staring.

anger was now replaced by that shame.  that embarrassment.  

it was 95 degrees outside- 110 inside me. we drove home and i put on Noggin- crack for kids- had a glass of wine and made dinner.  i allowed myself to feel deeply sorry for myself – when no one was looking except the dog. her obsessiveness was worsening. her sticky thoughts were overtaking her.  it seemed that everywhere we went - she couldn't handle it.  and i couldn't handle her.

after dinner and clean up and bath time and bed time and much help from Mike,  i sat outside on the phone with one of my best girlfriends and the warm evening hugged me. she reminded me of who i am, of who zoe is, with her differently wired brain, she acknowledged the struggle, and she forgave me. i was at peace- even in this day, even with this girl, even with myself- who i can never escape from.  

zoe came outside after her shower, she said she was sorry, she said perhaps if i sing to her in the market to remind her to not ask for things it would help.  i forgave her.  i asked her to forgive me for forgetting, and yelling, and not understanding her.  it’s OK mommy, and she sang her favorite Billy Bragg song, “at the top of the stairs the lights on..” 

this is Life.   beautiful begonias beside the little agonies.