patch the hole

know yourself. know what matters to you. now - live by it.

last friday was full. i had six patients in the morning clinic- several with acute needs, and i was behind on my personal agenda of things i needed or wanted to get done that afternoon at work. i had to finish a talk on homelessness and palliative care and needed a few hours at work, no interruptions- to get it done. i was going to present my research plan to a group of potential collaborators and people much more advanced than i am in the field of research.

no sooner had i sat down at the computer then i heard someone outside my office cubicle door mumbling. they sounded lost.
"can i help you?" i said through my door.
"they told me to come back here."
i opened the door - and there stood a very thin disheveled man with a giant protruding stomach holding my business card.

" Mr. R? is that you?? i've been looking for you for a month!"

mr. r is my homeless palliative care clinic patient. my only homeless palliative care clinic patient. and i'd only seen him once before. he had then gone missing, AWOL, from the homeless program. no one could find him- he didn't have a phone- and he was not in his usual places. i was convinced that he would end up dead or near dead, under a bridge. that i had failed him, because some how in our interaction, he must have become scared off- and instead of keeping his appointments and following up- he'd fled. i really had been looking for him. i mean, talking to his social worker regularly, contacting the other clinics, looking in the computer for some evidence of his whereabouts. and he had come to signify for me the problems in our system. he became the embodiment of the trouble- the flesh behind the research. how do we deliver really good end of life care to the homeless and disenfranchised? how do we coordinate their care? how do we communicate effectively? how do we really help them - with medications, symptom control, re-enter a social situation, re-connect with their families- find them a place to be- to rest- to be cared for in the last few months of life? this is my career goal- my area of interest and possibly research.
and there he was- a month later- not dead, not almost dead in the ER- but in my office, holding my card- ready for some help. he knew where to come. he had been living under a highway bridge. he hadn't been drinking. he'd lost his last place with his stuff and all his medicines. he was hungry and he'd borrowed 2 dollars to take a MARTA shuttle to the VA.
i did what seemed natural. i did what felt right. i gave him a hug. i made him some miso soup. and i let him use my cell to call his sister. and i admitted him to the hospital to take care of all his many medical and social needs at once.

i went on my trip three days later. i presented my research plans. the first day i was there- i got excited about it all. the academic world. the research ideas. but i kept thinking about mr. r. and how his return, made my day. it was so meaningful. because once again, it's the litte things that matter. it's the individual. it's not the big power point presentation or the grant or the paper in a good journal. but it's mr. r, whose family hasn't known where he is for years- finding him. it's him knowing that people care for him. that we're really not all that different. we all get hungry. we all get sick. we all need a hug.

this is what matters. ultimately.

i just started reading the book called The Hole in our Gospel writen by richard stearns,the president of World Vision. i'm only on chapter 2 and i've been crying through the whole book. (yes kim- the ugly cry). because it's what i've been longing to hear. because it's the truth. because the whole point of Jesus was and is love, redemption, social transformation, radical change. being broken by the broken and changing our lives. caring for those who suffer- all around us- caring for eachother. and the beautiful thing is, the thing that i tell my kids- the thing i remind zoe- is that we can all do this. we don't need to be doctors or architects or scientists. we just need to care, to love, and to live it. and everyone can do that.

perspective

sometimes you just have to get outside of yourself to really see your life. we're too close. myopic. the little things blurr together and we can't see the difference- we can miss the growth. the day to day change seems so small or non-existent and it takes another pair of eyes to see. my moment to moment- as you know- is a challenge. it is full of repetition- it's full of lessons learned and re-learned. it's one step up and two steps back.
so yesterday i got some perspective. yesterday i got to see zoe through someone else's eyes- from someone who hadn't seen her in a year. and it was Gods gift to me.

i heard that she is so different from last summer. that she has insight and is self-aware. that she knew when to stop and when to wait and when to tell people that she has a non-verbal learning disorder. that she is doing so well.

i think the best part was that this perspective came from someone who doesn't know her well- and doesn't know what had been going on or what this year has been like. he was blinded to the intervention. just two points in time. and this happened when zoe was at the guster concert with her dad- meeting lily and her family and friends and there was so much potential for disaster- for stickiness.
but instead it was fun. it was her living her life and enjoying it. her not overwhelmed, not obsessive, not in her own world. it was zoe engaged and delightful. zoe making other people feel good. and even if it we have a terrible week - i will hold on to the perspective of that alaskan visitor- who can see my daughter in a way that i can't - who could see the forest through the trees.

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.

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.

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.

letting go

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

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

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

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

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

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

finding the pose

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

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

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

joy

i had a patient today in clinic who i really like. i've seen her about 4 times now. she is my age. she is dying. she comes in about every month- always calm- always together- always kind- peaceful.
a year ago, she was fine. now, her body is not- but she is- she really seems fine.
so today i asked her why.
she told me -her faith.
"in what?" i asked.
in Jesus, she said. we know so little, and the real picture is so big, we just see a small piece of it, she said. none of us know when our time is up- so live well, she said. be present- enjoy it- savor it.
so wise.
she's mastered what i keep trying to grasp- to just be- no matter what. to not let the stresses get to me so befuddled. to not be so easily enchanted by the sunshine and in despair over a bad zoe day. here is a woman who is dying when she shouldn't be. who has every right to be sad and angry and bitter, resentful, and unhappy. but she doesn't let her new reality change her person- she doesn't let her cancer, steal her joy. wow.

this week was spring break for everyone. we were home for our "stay-cation". zoe went for a sleepover one night and was gone the entire next day. so i had time with just the boys. it was so fun. i actually played with them- and enjoyed it. i know that sounds crazy, but i spend a lot of time organizing things and driving them and feeding them- but not nearly enough time - just playing. that next day when zoe was home- it was really hard. suddenly i was back in the world of sticky thoughts and hypersensitivity- and immediately i became grumpy and sad. mostly i was sad at myself for being so lame. for being so easily swayed. for allowing her mood- her challenges- her differences to dominate my mood and my person. for knowing that my response is key- i can make it better or worse, for everyone.

i remember when mike and i were going through the prenatal diagnosis with jude- we decided that no matter what the outcome, no matter how disabled he might be- we wouldn't let it destroy our joy. it was a really important decision- a commitment that we would hold each other accountable to. i'm seeing now, with zoe, that we need to make that commitment again. i see how often, i let our circumstances - our tough moments - spiral me down- eat at my joy- poke holes in it. deflate me. i leave today and zoom in to the future, terrified. i chew on all the decisions that i need to make about her and question the ones we've already made. i spend so much time in worry or dread that i miss the living it.


so i left clinic today feeling so blessed by this woman's presence. blessed by our connection and so thankful for her willingness to share her wisdom. to show me that it's possible. to remind me that joy is not happiness- it's bigger and deeper. that life can be so hard- but we are not swallowed by the badness. there is and can always be- our joy.
find it, hold on to it.

the beginning

mothers always know. they know. so listen to them.
when zoe was a few weeks old- i looked at her back when changing her and thought her spine looked curved. "no! that is just her moving around!" said everyone. then when she was three months old- she couldn't lift her head up - she could hold it up well when she was held, but couldn't lift it up off the floor or crib- and so would move her head back and forth and get really frustrated- and hated, for this reason, being put on her stomach. we went to the doctor expecting- "oh don't worry about it." and got sent for an x-ray. we were told the differential diagnoses- torticolis - or nothing- or klippel-feil syndrome. no one ever likes the word "syndrome" - it just sounds bad. i was a medical student at the time- and went straight for the books to see what potentially was wrong with my baby. i remember reading about klippel-feil syndrome (a triad of short neck, low posterior hair line, and fusion of the cervical vertebrae) and the other associated problems ( congenital heart defects, kidney defects, scoliosis or other vertebral problems) and i remember praying- please God, anything but klippel-feil syndrome. doing the x-ray was awful- as was waiting for the results. then - there it was. looks like some fusion of the cervical vertebrae- you'll need to go see an orthopedic surgeon to clarify the diagnosis. but i knew what that meant. it meant klippel-feil syndrome.

this started a battery of tests and specialty visits including, cardiology, and an echocardiogram, blood work, genetics specialist, a renal ultrasound, and full spine films. i remember each time praying, "please God, let this organ be OK." when we went to the cardiologist- while i'm holding down a screaming 4 month old- he says, "cool! two heart defects- see that right there?"
never, ever, should 'cool' and 'defect' be in the same sentence.
never, ever, should you treat a fellow member of the health profession like a colleague discussing an interesting case, when she is a parent and you're talking about her kid!
don't they teach people anything in medical school?

the rest of the x-rays continued to reveal more "defects". curvature of the lumbar spine, missing part of one vertebra and fusion to the one above. sprengels deformity of the shoulder. she'll definitely need surgery, it's just a matter of when. and i remember feeling overwhelming sadness for this little child with her deformities. and worry. and anger. why was this happening to her? to us?

one of my childhood neighbors was an orthopedic surgeon and his wife also a doctor. their second child was born with "clubbed feet". they had heard what we were going through and called to support us. i remember vividly her first question, "how are you dealing with the guilt?" wow. here is a woman who had been there- who had carried a child in her womb, born with a "deformity". a physician who knew that there was no known cause of these orthopedic conditions and yet like me, had walked through every week of her pregnancy trying to trace what she did, or ate, to took, or saw at what moment that could have caused her baby to suffer- to be different- to be facing a life of difference. sure i'd felt guilt- intense guilt that only a mother can feel- but how was i dealing with it? i think i just sat on the couch, on the phone and cried. and that is OK because that is what i needed so badly. someone to acknowledge it. to tell me that it was normal to feel that. someone to name it because it was so real.


just before all of this went down, i had been interviewing for an OB/GYN residency. i had flown out to san francisco with zoe at 3 months to convince a group of doctors that they should hire me to work for them 100 hours per week for the next 4 years. i remember driving through the marin hills and thinking that this was crazy. i had a newborn. i needed to stop- i needed to slow down. the next day, i pulled out of the match (the process of ranking and being ranked for residency programs). it meant i'd jumped off the merry-go-round and was taking a year off. i think i also knew, the way only a mother does- that there was something wrong with my baby. and two weeks later zoe had that first x-ray.

always listen to your heart- your guts- the mind can be so confusing- but the other parts often know. i knew i needed to stop. i knew i needed some time - God knew even more- knew that in 2 weeks i'd have a lot more on my plate- i'd have a diagnosis i'd never even heard of given to my daughter. and that over the next year, we'd deal with the beings of delays and therapy, seeds of worry would be planted, and a long path would begin to unfold.


interestingly, this space isn't about 'living, loving and learning with a girl with klippel-feil syndrome'. what i thought would have been the end of me- was only the beginning and has proven so far, to be not that big of a deal. i often forget that she has this diagnosis- except for the bi-annual follow up x-rays- she's never had surgery and the holes in her heart closed up naturally- all bits of healing- answered prayers- it's good to remember that.

and it reminds me that suffering is relative. i thought at the time that having this orthopedic challenge would be such a burden for her- for us. now, compared to the learning struggles she has, it seems like nothing. and yes i've gone down the path of - OK God, you could have cut her a break!- who has nvld and klippel-feil syndrome and wears glasses and has a funny shoulder (sprengel's deformity)?

but He knows what he's doing even when i don't. and it's perfectly orchestrated. He knew that knowing the next 10 years of challenge all at once would have been too much for us- we needed it in bits. He knew that i would need that year off with zoe- to spend hours literally trying to get her to role over, to crawl, to climb stairs. that i would have broken apart- trying to do all that and process it while being in residency. and years later when we were finding out before kindergarten that she was "severe enough to need special education" it was the same week that we found out jude had hydrocephalus at my 20 week ultrasound. this was for us the "wake up call"- this was the moment when there was no denying- that something was really wrong with her learning, yet i wasn't even phased that she was going to get an IEP (individual educational plan) and need OT and PT and speech at school- because suffering is relative. and that timing, ironically was another example of Gods grace.

lemons

today i'm remembering. today is a new day. it is a new beginning. and i thank God for that. the slate is wiped clean. there will be new opportunities to be still and know. to be still and trust. to be still and listen. i like to move around a lot- being still is hard. i like to think i know- i like to figure out how to know. but today i'm remembering that i just need to be.

when i was in glen ellen for my friends 40th- we watched a bad movie- but the first line of the movie was good-
when life give you lemons, make lemonade.

last week was hard. i had stuff to do at work that was stressing me out- and that i'm sure contributed to zoe's challenged week, which then stressed me out further. that happens to us. we feed off eachother- and last week it was a downward spiral. and each little setback felt like miles back. and each mole hill felt like a mountain. and i began to question everything, again. why am i homeschooling her? i can't do this. maybe she's not learning anything. maybe this isn't what she needs. what should we do? what about the summer? and on and on. trying to know. not at all still.

yesterday was easter. i'm up in the north carolina mountains. years ago, i was sad about something (can 't even remember what) - and more sad about my lack of perspective and i was crying to mike, 'why do i always make mountains out of mole hills!" and he said "but mountains are so much more beautiful than molehills." sometimes i have to turn things into something huge- then step back and see that even in the tremendous size and with awe and even fear- life is beautiful.

so yesterday i was trying to remember. remember where we'd been. to step back and see the mountain, the beauty and how far we'd already climbed. to remember who zoe really is- underneath the sticky thoughts and easy frustration- the overwhelm and the distance that can come from that-complicated i'm sure, by pre-teen hormones. and i remembered zoe and her lemonade stand.

a few summers ago when she was 8, she'd been asking to have a lemonade stand. i had kept promising her, and she'd kept nagging me- and finally one late afternoon- i said OK. she loves coming up with an idea, and then making it happen. she loves getting all the parts together and feeling proud that she's done it. so she got a box and set it up in the drive way. she got some paper cups and ice, and we made some lemonade and went outside. our street doesn't get a lot of foot traffic- but there were some neighbors out. someone stopped and zoe gave him a cup.
"how much does it cost?" he said.
"it's free!" he gave her a quarter.
then about 15 minutes later and no more customers, zoe spied a neighbor out gardening. she decided to bring her a glass of the lemonade. i watched her walk three houses down- very carefully- not to spill. i watched her talk to the woman for a minute and then turn and come running up the hill back to our driveway. she had a gigantic grin and was shouting,
"mommy! mommy! it's working, the lemonade stand is working!!"
"what do you mean zoe?"
"it's making people happy!!"

this little girl who's been given quite a few lemons- was making lemonade. this little girl who could be so soured by it- was having a lemonade stand.
she was giving away the lemonade.
she was happy, so happy, because she was making other people happy- with her lemons- with her lemonade.

this is who zoe is- and how beautiful is that!

so today- i will live in today- i will be obedient to my call to be her mom- to love her deeply, sticky, sweetly, lemony, set back or leaps forward. today we will hike up part of the mountain - and we will see the beauty.