official tweendome. it's happening. today- we entered the land of one of my least favorite words "orthodontia". braces with rainbow colored bands- of course!
she did great- seriously- in fact- i've been holding my breath- because it's been a shhhhhhh- (really good week- followed by a great weekend). i haven't been writing because i'm convinced i jinx it- i know- crazy- but if you were me, and anything seemed to set her off- including writing positive things on some random internet space- you'd avoid it too. but it feels good! and i'm so proud of her!
so here's to zoe and her new look- and her great weekend! fingers crossed and hands folded- lets hope it stays.
Monday, June 28, 2010
o
be here now
when i was in college, you could get a whole semester of PE credit for going on a 10 day outward-boundish experience called La Vida. it was a hiking, camping, self-exploration experience in the white mountains of new york. fantastic - i thought- more free time during the year and i like hiking. so i went the week before my junior year. i was dating mike and felt like it would be a good soul-searching time- hours of walking in the woods- no distractions- new people to meet and be with- and the grand finale was our "solo". 24 hours completely alone in the woods. this part was both exciting and terrifying. longed for and dreaded. i was craving some real alone time, i was wanting quiet- meditative-regrouping time, but i had never been alone-alone overnight- especially not in the woods. i had visions of bears, or worse yet some crazy man who lived in the woods- coming to get me when i least expected it.
the theme of the trip was "be here now". be in the woods. be beside this stream. be alone. be with out a shower for 10 days, and be ok with that. be tired and hungry- because sometimes life is like that. don't waste the week dreaming of your favorite food or what you're doing with your semester- be. here. now.
but what happens when life take us to places we don't want to be- ever? how do we do this? how are we when we're somewhere we don't want to be? what is the balance between trying desperately to move on- to avoid- but also accept where we are- and what about embracing it?
on the trip we made fun of this all the time. if someone was lamenting about missing their bed or their boyfriend- someone would shout out, "just be here now!" if someone was complaining about the mosquitoes or the blister on their foot, out it would come again, "be here now!". at which point the person complaining would shout " i am here, that's the problem, and i wish i could leave now!".
the lesson from being on that trip was and is my lesson for life. enjoy it- just because it is. take the good with the bad. don't miss the moments around us just because they don't smell good- or feel good. no one ever said any of it would be easy.
in the bugs and the heat and with a 70 pound pack on my back, dirty and tired with 8 more miles to go that day, i learned about endurance, and about the beauty in pushing onward, the comradery in the struggle. that the mountain air smells really sweet, and food tastes better when you're very hungry. that slowing down what you take in- does bring clarity.
finally the solo. we were dropped at our sites, i set up my tarp, i had a book and my bible and my journal. i was physically comfortable- no hiking that day- i had quiet and physical stillness. so i waited, for something- revelation or awareness- but all i felt was antsy and impatient and eager to be moving again. there wasn't inner stillness- and i was surprised.
but for me- that stillness comes with miles of walking ahead in a disciplined way.
the theme of the trip was "be here now". be in the woods. be beside this stream. be alone. be with out a shower for 10 days, and be ok with that. be tired and hungry- because sometimes life is like that. don't waste the week dreaming of your favorite food or what you're doing with your semester- be. here. now.
but what happens when life take us to places we don't want to be- ever? how do we do this? how are we when we're somewhere we don't want to be? what is the balance between trying desperately to move on- to avoid- but also accept where we are- and what about embracing it?
on the trip we made fun of this all the time. if someone was lamenting about missing their bed or their boyfriend- someone would shout out, "just be here now!" if someone was complaining about the mosquitoes or the blister on their foot, out it would come again, "be here now!". at which point the person complaining would shout " i am here, that's the problem, and i wish i could leave now!".
the lesson from being on that trip was and is my lesson for life. enjoy it- just because it is. take the good with the bad. don't miss the moments around us just because they don't smell good- or feel good. no one ever said any of it would be easy.
in the bugs and the heat and with a 70 pound pack on my back, dirty and tired with 8 more miles to go that day, i learned about endurance, and about the beauty in pushing onward, the comradery in the struggle. that the mountain air smells really sweet, and food tastes better when you're very hungry. that slowing down what you take in- does bring clarity.
finally the solo. we were dropped at our sites, i set up my tarp, i had a book and my bible and my journal. i was physically comfortable- no hiking that day- i had quiet and physical stillness. so i waited, for something- revelation or awareness- but all i felt was antsy and impatient and eager to be moving again. there wasn't inner stillness- and i was surprised.
but for me- that stillness comes with miles of walking ahead in a disciplined way.
Sunday, June 20, 2010
kung fu
sometimes you just show up and laugh. sometimes you just show up and cry. and sometimes you just show up.
that's how it felt at church today- just show up- in what ever form you're in. today, it was broken, and i'm not sure why. perhaps because i've had a migraine all weekend. perhaps because i'm just tired of zoe's relentless stickiness. i'm going back to that place of fearing whenever we go out -of how she'll be- of what will set her off. that lingering fear- lets me know that it'd been a tough few days.
yesterday- zoe and i went to see karate kid, the new one. i loved it. there were many poignant parts about the kung fu way- using it to create peace, not stir up anger or revenge. there were lessons learned about letting go, and embracing the new and growing up. and there was a quote from mr. han the kung fu teacher, who says to dre (the new karate kid),
" being still and doing nothing are two very different things."
so easy to forget that. to feel like we need constant motion, to feel like when we're still, we are going no where. so wrong. like the panicked person in the water who is flailing around trying to help themselves, when if they'd just roll onto their back and be still- they'd float- and achieve what you're trying to do with all that flailing.
it's like in yoga- getting into the pose is about subtly moving your body in opposite directions- back and forth, changing focus- into aligment- to achieve stillness- quieting the mind- letting go. when i'm all knotted up inside- i can't relax into the pose.
this afternoon zoe and i stopped by lily's house to drop something off. i'd done the usual 'prep' work-
"what if lily's not there?" " what if lily is with a friend?" so to prepare her for those unexpected things which might throw her off. (yes- exhausting, and annoying- but helpful)
we get there and lily is at the neighbors in the pool. i waited- nothing.
heather invited her to go say hi to lily at the neighbors pool. i waited- again, nothing.
suddenly she comes back with lily to borrow a suit and go swimming with the kids.
"OK. weird. sticky day- but if she wants to do it."
an hour goes by- i'm now at the poolside watching and talking to the grown-ups- again nothing. she is there playing happily. and i'm amazed. and confused. why was the morning tough? why was yesterday and last night tough? why is this going smoothly?
but then- she became sticky and unglued. they were playing a game she didn't know, she didn't think of- she wouldn't listen to what it was or how to play- she just began to spiral down around the fact that she didn't think of it- that she felt left out- that she didn't understand- crying and splashing and making a scene. i told her she needed to get out and sit for a minute and then the anger was directed at me. i was making her so mad- i was ruining her time with her friends.
then her brain got naked- out loud- why couldn't she just get a long with kids? why did she always feel left out? was this all because of her non-verbal learning disability? and she's shouting this from the pool. it's like her frontal lobe just unloaded. no filter. and she let it all out. all that people think- but don't say. we spent the next 15 minutes trying to regroup- starting and stopping - with lily trying her best to re-include her, re-assure her- and me with my heart mushing- trying to not be mad- to not be ashamed- to not pity her- trying to love her, to support her, to make her feel worthwhile, to help her understand.
but i didn't understand. i have no idea what set her off. no idea what goes through her head. but i hear all off it- she outputs all of the emotion- but with no logic behind it- no understanding of causality- i feel i feel i hate- but no because- it's like a disorganized gush of yuck.
and then it became like a bad 'lifetime movie'. we're in the car- she's crying, i'm trying not to, in dark sunglasses- some hokey music is playing and the emotion is palpable. then she starts to unwrap her dad's fathers day gift, and i grab it and shout at her- "WHAT are you doing!! WHY would you do that!" and snatch it away- and then my tears begin to fall. because what i said had nothing to do with the unwrapped harry potter movie that she'd picked out. it had everything to do with the fact that i hate that we can't just enjoy an afternoon at the pool. that she had to spill her guts to everyone about every thought or emotion that ran through her head. displaced anger. just what an already confused little kid needs.
when we pulled in the driveway-she asked me if this had to do with having a non-verbal learning disorder or autism. i climbed in the back seat- i told her she didn't have autism- she said," but do kids with nvld and autism have a hard time understanding and saying what they mean?" "yes" i said.
"i don't want this!" she said.
" i know. i don't either." i said. " i hate it for you."
and then i outed myself about all the things i don't know. like why do little kids get cancer. and why do parents die, and why is it so hard for her to understand things and why does she get sticky thoughts. and why does God allow all this stuff to happen.
i told her all i did know was that i loved her, and God loved her, and that she was made for a special purpose- just as she is- nvld and all. and that anything else wouldn't be close to right. that she has a beautiful soul. that she is valuable just for being zoe.
being still is not doing nothing. i guess i should have know that because it's such hard work to just be still.
that's how it felt at church today- just show up- in what ever form you're in. today, it was broken, and i'm not sure why. perhaps because i've had a migraine all weekend. perhaps because i'm just tired of zoe's relentless stickiness. i'm going back to that place of fearing whenever we go out -of how she'll be- of what will set her off. that lingering fear- lets me know that it'd been a tough few days.
yesterday- zoe and i went to see karate kid, the new one. i loved it. there were many poignant parts about the kung fu way- using it to create peace, not stir up anger or revenge. there were lessons learned about letting go, and embracing the new and growing up. and there was a quote from mr. han the kung fu teacher, who says to dre (the new karate kid),
" being still and doing nothing are two very different things."
so easy to forget that. to feel like we need constant motion, to feel like when we're still, we are going no where. so wrong. like the panicked person in the water who is flailing around trying to help themselves, when if they'd just roll onto their back and be still- they'd float- and achieve what you're trying to do with all that flailing.
it's like in yoga- getting into the pose is about subtly moving your body in opposite directions- back and forth, changing focus- into aligment- to achieve stillness- quieting the mind- letting go. when i'm all knotted up inside- i can't relax into the pose.
this afternoon zoe and i stopped by lily's house to drop something off. i'd done the usual 'prep' work-
"what if lily's not there?" " what if lily is with a friend?" so to prepare her for those unexpected things which might throw her off. (yes- exhausting, and annoying- but helpful)
we get there and lily is at the neighbors in the pool. i waited- nothing.
heather invited her to go say hi to lily at the neighbors pool. i waited- again, nothing.
suddenly she comes back with lily to borrow a suit and go swimming with the kids.
"OK. weird. sticky day- but if she wants to do it."
an hour goes by- i'm now at the poolside watching and talking to the grown-ups- again nothing. she is there playing happily. and i'm amazed. and confused. why was the morning tough? why was yesterday and last night tough? why is this going smoothly?
but then- she became sticky and unglued. they were playing a game she didn't know, she didn't think of- she wouldn't listen to what it was or how to play- she just began to spiral down around the fact that she didn't think of it- that she felt left out- that she didn't understand- crying and splashing and making a scene. i told her she needed to get out and sit for a minute and then the anger was directed at me. i was making her so mad- i was ruining her time with her friends.
then her brain got naked- out loud- why couldn't she just get a long with kids? why did she always feel left out? was this all because of her non-verbal learning disability? and she's shouting this from the pool. it's like her frontal lobe just unloaded. no filter. and she let it all out. all that people think- but don't say. we spent the next 15 minutes trying to regroup- starting and stopping - with lily trying her best to re-include her, re-assure her- and me with my heart mushing- trying to not be mad- to not be ashamed- to not pity her- trying to love her, to support her, to make her feel worthwhile, to help her understand.
but i didn't understand. i have no idea what set her off. no idea what goes through her head. but i hear all off it- she outputs all of the emotion- but with no logic behind it- no understanding of causality- i feel i feel i hate- but no because- it's like a disorganized gush of yuck.
and then it became like a bad 'lifetime movie'. we're in the car- she's crying, i'm trying not to, in dark sunglasses- some hokey music is playing and the emotion is palpable. then she starts to unwrap her dad's fathers day gift, and i grab it and shout at her- "WHAT are you doing!! WHY would you do that!" and snatch it away- and then my tears begin to fall. because what i said had nothing to do with the unwrapped harry potter movie that she'd picked out. it had everything to do with the fact that i hate that we can't just enjoy an afternoon at the pool. that she had to spill her guts to everyone about every thought or emotion that ran through her head. displaced anger. just what an already confused little kid needs.
when we pulled in the driveway-she asked me if this had to do with having a non-verbal learning disorder or autism. i climbed in the back seat- i told her she didn't have autism- she said," but do kids with nvld and autism have a hard time understanding and saying what they mean?" "yes" i said.
"i don't want this!" she said.
" i know. i don't either." i said. " i hate it for you."
and then i outed myself about all the things i don't know. like why do little kids get cancer. and why do parents die, and why is it so hard for her to understand things and why does she get sticky thoughts. and why does God allow all this stuff to happen.
i told her all i did know was that i loved her, and God loved her, and that she was made for a special purpose- just as she is- nvld and all. and that anything else wouldn't be close to right. that she has a beautiful soul. that she is valuable just for being zoe.
being still is not doing nothing. i guess i should have know that because it's such hard work to just be still.
Saturday, June 19, 2010
hope and expectations
i'm thinking about expectations. and about hope. and disappointment.
this week has been strangely good-especially given that for zoe, it is by far the busiest she's been in a year. she is doing the summer school program at her old school, and the enrichment program afterwards. this means that her day is from 8:30-3pm then she has gone straight from there to either brain balance or her social group, and then home- one day she even had a dinner play date.
in addition, her psychiatrist decided to taper her off of prozac- to see how she does.
i've been waiting for the shoe to drop. i've been waiting for her to fall to bits.
on monday, the first day, i did get a call from her via the school summer time principle about her frustration over not being able to "make a basket". i interpreted this as an art project- weaving a basket- it turns out she was taking about shooting hoops. she found it so funny that i misunderstood her, that she quickly recovered and went back to her day.
tuesday was beautiful. a little crabby with her brothers in the evening- but over all- she did well.
wednesday she had a bit of trouble on the math section of brain balance- but let it roll right off her- went on to the dinner play date and it was smooth sailing. even the times when a meltdown was in the forecast- she reigned it in. i was amazed. that night at home- she sat talking on the phone to her friend for 20 minutes. that was a first!
by thursday, i was kind of in awe, but also feeling really disconnected from her. missing time with her, but also wondering what was going on in her head. she hadn't said much about things- which isn't strange i guess- but i was so curious. was she checked out? was she OK but tired? was she .... separating herself from me...(which is a great and important thing). i tried to talk to her, but couldn't get much - just "things are fine!"
but i'm so used to things not being fine. i'm so used to hearing about how not fine things are. maybe i felt like it was time for me to hear good things- if good things were happening. i think i also wanted my possible guilt to be resolved- that i hadn't pushed her too hard- with this summer school thing. but perhaps, no news is good news?
friday- as you all know, is my work day. i leave the house at 6:15 when everyone is asleep. when i talked to mike at 8:30- he sounded awful. had the ball dropped? she'd gotten mad when he told her for the umpteenth time to get dressed (so i'm sure it was an excited and possibly angry command at that point). she threw her snow globe across the room- shattering it to smithereens.
pretty dramatic. she is not a violent kid.
but - instead of a chorus of seemingly meaningless whined "i'm sooorrrryyy"'s, she said "i'm so ashamed." and didn't talk the whole way to school. then apologized. finally, appropriate timing.
i finished early at work and went to pick her up at school to drive to brain balance - she wasn't there waiting. she was in the school psychologists office.
"oh great!" i thought. "can we just have one good week. just one."
and it was that feeling like the scene in The Pink Panther Strikes Again, when Inspector Dreyfus has finally recovered from this crazy inability to deal with Chief Inspector Clouseau, and he exits the psychiatrists office- freed from the asylum, and upon seeing Clouseau for 5 minutes is once again, chasing him around the parking lot yelling 'kill him! kill him!!" and the camera pans to the window above, in the psychiatrists office, where he is watching, shaking his head in disappointment.
it's that feeling like, try as we may, it just doesn't ever really go away. that the school psychologist is thinking, "right so she can hold it together for 4 days, but then we have trouble."
the thing is, i don't care really, what the school psychologist thought or thinks. it's just that it gets tiring to be in that place of ..'.aaahhhhh...maybe things have turned out alright' and then have the rug snatched out. and this time, the rug wasn't even moved! and again, i see that it's all about me, my interpretation of things, my "needs", my levels of intolerance, or tolerance. she's done amazingly well- has far exceeded any of my expectations- i'm so proud of her! but to me, i was riding that wave of "normal". i was moving into that place of, "we've arrived". i was having daydreams about her returning to school full time, and loving it, fitting right in and having the experience that i had as a girl. i was dreaming about full identification with my daughter. i was forgetting that actually, nothing is broken. that there is no "done" - that "normal " for us, is this.
hope and expectations and disappointment are things we all deal with. and they can get all mucked up together. i see it all the time with my patients. at the end of life- hope is really important. but expectations can ruin that- expectations breed disappointment. and hope for the wrong things usually means that expectations have jumped in. hope is the right brain, expectations are the left brain- always trying to quantify things- create reachable marks. get into that school- vs. have a happy learning experience. live for 6 more months, vs. have a peaceful existence for as long as i have left. hope is open, and flexible. expectations are rigid and breakable. even the way the words look and sound.
so again, i'm on the same learning path as zoe- less rigid, more flexible. less left brain, more right brain. much more hope and much less expectation.
being still and letting go. ahhh, the surprises that await!
this week has been strangely good-especially given that for zoe, it is by far the busiest she's been in a year. she is doing the summer school program at her old school, and the enrichment program afterwards. this means that her day is from 8:30-3pm then she has gone straight from there to either brain balance or her social group, and then home- one day she even had a dinner play date.
in addition, her psychiatrist decided to taper her off of prozac- to see how she does.
i've been waiting for the shoe to drop. i've been waiting for her to fall to bits.
on monday, the first day, i did get a call from her via the school summer time principle about her frustration over not being able to "make a basket". i interpreted this as an art project- weaving a basket- it turns out she was taking about shooting hoops. she found it so funny that i misunderstood her, that she quickly recovered and went back to her day.
tuesday was beautiful. a little crabby with her brothers in the evening- but over all- she did well.
wednesday she had a bit of trouble on the math section of brain balance- but let it roll right off her- went on to the dinner play date and it was smooth sailing. even the times when a meltdown was in the forecast- she reigned it in. i was amazed. that night at home- she sat talking on the phone to her friend for 20 minutes. that was a first!
by thursday, i was kind of in awe, but also feeling really disconnected from her. missing time with her, but also wondering what was going on in her head. she hadn't said much about things- which isn't strange i guess- but i was so curious. was she checked out? was she OK but tired? was she .... separating herself from me...(which is a great and important thing). i tried to talk to her, but couldn't get much - just "things are fine!"
but i'm so used to things not being fine. i'm so used to hearing about how not fine things are. maybe i felt like it was time for me to hear good things- if good things were happening. i think i also wanted my possible guilt to be resolved- that i hadn't pushed her too hard- with this summer school thing. but perhaps, no news is good news?
friday- as you all know, is my work day. i leave the house at 6:15 when everyone is asleep. when i talked to mike at 8:30- he sounded awful. had the ball dropped? she'd gotten mad when he told her for the umpteenth time to get dressed (so i'm sure it was an excited and possibly angry command at that point). she threw her snow globe across the room- shattering it to smithereens.
pretty dramatic. she is not a violent kid.
but - instead of a chorus of seemingly meaningless whined "i'm sooorrrryyy"'s, she said "i'm so ashamed." and didn't talk the whole way to school. then apologized. finally, appropriate timing.
i finished early at work and went to pick her up at school to drive to brain balance - she wasn't there waiting. she was in the school psychologists office.
"oh great!" i thought. "can we just have one good week. just one."
and it was that feeling like the scene in The Pink Panther Strikes Again, when Inspector Dreyfus has finally recovered from this crazy inability to deal with Chief Inspector Clouseau, and he exits the psychiatrists office- freed from the asylum, and upon seeing Clouseau for 5 minutes is once again, chasing him around the parking lot yelling 'kill him! kill him!!" and the camera pans to the window above, in the psychiatrists office, where he is watching, shaking his head in disappointment.
it's that feeling like, try as we may, it just doesn't ever really go away. that the school psychologist is thinking, "right so she can hold it together for 4 days, but then we have trouble."
the thing is, i don't care really, what the school psychologist thought or thinks. it's just that it gets tiring to be in that place of ..'.aaahhhhh...maybe things have turned out alright' and then have the rug snatched out. and this time, the rug wasn't even moved! and again, i see that it's all about me, my interpretation of things, my "needs", my levels of intolerance, or tolerance. she's done amazingly well- has far exceeded any of my expectations- i'm so proud of her! but to me, i was riding that wave of "normal". i was moving into that place of, "we've arrived". i was having daydreams about her returning to school full time, and loving it, fitting right in and having the experience that i had as a girl. i was dreaming about full identification with my daughter. i was forgetting that actually, nothing is broken. that there is no "done" - that "normal " for us, is this.
hope and expectations and disappointment are things we all deal with. and they can get all mucked up together. i see it all the time with my patients. at the end of life- hope is really important. but expectations can ruin that- expectations breed disappointment. and hope for the wrong things usually means that expectations have jumped in. hope is the right brain, expectations are the left brain- always trying to quantify things- create reachable marks. get into that school- vs. have a happy learning experience. live for 6 more months, vs. have a peaceful existence for as long as i have left. hope is open, and flexible. expectations are rigid and breakable. even the way the words look and sound.
so again, i'm on the same learning path as zoe- less rigid, more flexible. less left brain, more right brain. much more hope and much less expectation.
being still and letting go. ahhh, the surprises that await!
Tuesday, June 15, 2010
landing in uganda
i want to write more about the early years with zoe, when we were trying so hard to understand her needs, when we were in that awful place of denial alternating with hyper-concern. when we felt most alone, unclear of what supports we needed or could / should have, when we wanted a diagnosis and feared labels so deeply.
so this is where i left off- part ii- after 'the beginning'.
zoe has the advantage of being extremely cute and charming. she has always been like that. when she was 8 months old, we went to italy for a month. she was still immobile and happy that way, so traveling was relatively easy. everyone loved her- of course it was italy- the most child-friendly of all europe it seems. when we got home, most of my friends had started residency and i was doing the mommy thing. zoe and i started going to gymboree- a little kids play group/gym activity. it's one of those places where you can't believe someone would ever talk in that high squeaky baby voice and sing silly baby songs in front of other people. where parents get to brag about whatever milestone their kid has just reached, where moms can talk about the woes and joys of baby life and kids can smile and stare at each other and watch with fascination as some other big person squeaks,
" i see zoe unnnndeeeerrrr the parashute, i see bradley unnnnnndddeerrr the parachute......" while their moms clap or drum the mat they're sitting on, as instructed.
it felt weird, it felt forced, i didn't fit in, and neither did my baby.
ever week started off with "introductions" and everyone says their name, their baby's name and how old the child is- and what they've done that week. it was 12 weeks long.
"hi, i'm kris. this is zoe, she's 9 months old and she can sit up and just learned to roll over!"
"hi i'm kris, this is zoe, she's 10 months old and she can still sit up and roll over!"
" hi i'm kris and this is zoe, she's 11 months and she can sit and roll over."
it was the first time i'd felt the "yuck" in a while. i didn't know these people. i didn't know if i should explain something-
"hi i'm kris, this is zoe, she's delayed and we're starting physical therapy."
or if i should just ignore it. i just didn't know.
i also didn't fit in with the mom culture part. i was home, but i wasn't a 'stay-at-home'. i was technically a doctor, but had never practiced medicine- so i couldn't say i was a doctor, really.
so i kind of felt like a phony all around.
i say all this, because having a child with special needs, follows you where ever you go- even into the little places. think about when your kid fell and got a black eye and you're in the market and people are staring at you or taking a second look, like who is that mother and what is she doing to her kid? and you feel the need to explain what happened because you're afraid people will think you socked your child. or that if you explain it to a total stranger, then surely you'll seem like you're covering something up.
landing in uganda (see first post 'guess i'll go eat worms') is like that.
it feels like you're underwear is showing - all the time. and it takes a while to get used to that.
at gymboree, at 10 months old, i wasn't there.
i'd go to physical therapy each week and look around and part of me would feel so thankful becaue it could be worse. and part of me, couldn't believe that this was my life, her life. that i'd accidentally joined that club- the sick kid club- that i never wanted to join.
and i would be at home, watching her scream as i put her on her stomach - thrashing her head back and forth- unable to roll over- and i'd know that loving her meant that i couldn't just pick her up or roll her over, but i could sit beside her in her pain and frustration, crying myself often, and tell her that i love her, that she could do it and rub her tiny back.
having children has made me think about God differently.
because there have been many times in my life when i felt like zoe on her stomach- trapped, helpless, angry, hurting- and have screamed out to God, " just roll me over!" "get me out of here!" " i hate this!"
and now i know how much He wanted to, but knew better. knew that what ever i was stuck in, i needed to be there and figure the way out in order to get where i needed to go next, to learn that path. but He has never left me on my stomach and walked away. and that's what matters. non-abandonment.
yet this i call to mind and therefor i have hope-
because of the Lord's unfailing love we are not consumed.
His mercies are new every morning.
lamentations 3: something
i have leaned on this verse many times- i've even posted it before. i like it because of the words; hope, unfailing love and not consumed- and because of 'new every morning'; so most of it. it's a promise- and i hold onto this.
because sometimes i feel like i'm about to be consumed. zoe does too. everyone does, really.
all these 10 years later- life for me, can feels like this- being on my stomach, unable to roll over- it's the same lesson. zoe needed to do it herself, but she needed me beside her. the challenges continue, all the milestones are hard, but bit by bit she gets there. my milestones are different, they're not physical, they're emotional. trickier. and i'm so thankful for the God who sat and continues to sit beside me- present in the struggle.
so this is where i left off- part ii- after 'the beginning'.
zoe has the advantage of being extremely cute and charming. she has always been like that. when she was 8 months old, we went to italy for a month. she was still immobile and happy that way, so traveling was relatively easy. everyone loved her- of course it was italy- the most child-friendly of all europe it seems. when we got home, most of my friends had started residency and i was doing the mommy thing. zoe and i started going to gymboree- a little kids play group/gym activity. it's one of those places where you can't believe someone would ever talk in that high squeaky baby voice and sing silly baby songs in front of other people. where parents get to brag about whatever milestone their kid has just reached, where moms can talk about the woes and joys of baby life and kids can smile and stare at each other and watch with fascination as some other big person squeaks,
" i see zoe unnnndeeeerrrr the parashute, i see bradley unnnnnndddeerrr the parachute......" while their moms clap or drum the mat they're sitting on, as instructed.
it felt weird, it felt forced, i didn't fit in, and neither did my baby.
ever week started off with "introductions" and everyone says their name, their baby's name and how old the child is- and what they've done that week. it was 12 weeks long.
"hi, i'm kris. this is zoe, she's 9 months old and she can sit up and just learned to roll over!"
"hi i'm kris, this is zoe, she's 10 months old and she can still sit up and roll over!"
" hi i'm kris and this is zoe, she's 11 months and she can sit and roll over."
it was the first time i'd felt the "yuck" in a while. i didn't know these people. i didn't know if i should explain something-
"hi i'm kris, this is zoe, she's delayed and we're starting physical therapy."
or if i should just ignore it. i just didn't know.
i also didn't fit in with the mom culture part. i was home, but i wasn't a 'stay-at-home'. i was technically a doctor, but had never practiced medicine- so i couldn't say i was a doctor, really.
so i kind of felt like a phony all around.
i say all this, because having a child with special needs, follows you where ever you go- even into the little places. think about when your kid fell and got a black eye and you're in the market and people are staring at you or taking a second look, like who is that mother and what is she doing to her kid? and you feel the need to explain what happened because you're afraid people will think you socked your child. or that if you explain it to a total stranger, then surely you'll seem like you're covering something up.
landing in uganda (see first post 'guess i'll go eat worms') is like that.
it feels like you're underwear is showing - all the time. and it takes a while to get used to that.
at gymboree, at 10 months old, i wasn't there.
i'd go to physical therapy each week and look around and part of me would feel so thankful becaue it could be worse. and part of me, couldn't believe that this was my life, her life. that i'd accidentally joined that club- the sick kid club- that i never wanted to join.
and i would be at home, watching her scream as i put her on her stomach - thrashing her head back and forth- unable to roll over- and i'd know that loving her meant that i couldn't just pick her up or roll her over, but i could sit beside her in her pain and frustration, crying myself often, and tell her that i love her, that she could do it and rub her tiny back.
having children has made me think about God differently.
because there have been many times in my life when i felt like zoe on her stomach- trapped, helpless, angry, hurting- and have screamed out to God, " just roll me over!" "get me out of here!" " i hate this!"
and now i know how much He wanted to, but knew better. knew that what ever i was stuck in, i needed to be there and figure the way out in order to get where i needed to go next, to learn that path. but He has never left me on my stomach and walked away. and that's what matters. non-abandonment.
yet this i call to mind and therefor i have hope-
because of the Lord's unfailing love we are not consumed.
His mercies are new every morning.
lamentations 3: something
i have leaned on this verse many times- i've even posted it before. i like it because of the words; hope, unfailing love and not consumed- and because of 'new every morning'; so most of it. it's a promise- and i hold onto this.
because sometimes i feel like i'm about to be consumed. zoe does too. everyone does, really.
all these 10 years later- life for me, can feels like this- being on my stomach, unable to roll over- it's the same lesson. zoe needed to do it herself, but she needed me beside her. the challenges continue, all the milestones are hard, but bit by bit she gets there. my milestones are different, they're not physical, they're emotional. trickier. and i'm so thankful for the God who sat and continues to sit beside me- present in the struggle.
Sunday, June 13, 2010
becoming "mom"
it's official. i now have three different names- in a stage appropriate way. zoe has now dropped the "y" and i have become "mom". to jude, i'm "mommy", and to bryn, i'm still mama. (thank God). i'm not ready to just be "mom" but i know it's coming soon.
we just got back from camping in north georgia- it was beautiful- filled with kids and fireflies and freedom and marshmallows and tents and all that stuff that unites us. grownups, kids, nature.
but on saturday morning before we left, i was not feeling that. i was so stressed. we had so much to do, to pack- you know, kids and travel. but mostly, honestly, it was because of zoe. of where she already was. of how she almost always is with her best friend lily, the daughter of one of my oldest and best friends. it's so ironic. that my sister-friend, zoe's God-mother; and her daughter, who is the closest in age to my daughter of all my friends kids; are the people that zoe has the hardest time with. maybe its the passion- the intensity of loving someone who you feel competitive with, loving someone you're jealous of, loving someone who you feel you should be able to so closely relate to, yet your differences are palpable. maybe it's likely looking the mirror and seeing what you're not.
i can totally relate.
because a similar dynamic existed between her mother and me when we were growing up.
heather was my closest friend. we met at church when we were six, lived about 45 minutes apart and spent as many friday afternoons as we could convincing our mothers to meet at the 'half way point' and let us spend the weekend together at one of the houses- until sunday morning. pretty much, all we did was laugh. a lot. we turned everything into funny. we never had stress or competition with other friends because we didn't go to school together, or live in the same town. things were pretty great for us for about 7 years. then we hit puberty, or atleast heather did. and thus began the great divide.
she was tall, blonde, beautiful and had breasts. i was short, brown haired, flat chested and had braces. it was pretty bad- for me. it was also the summer that we decided to travel across the country together-to visit our grandparents houses, both couples lived on the beach and so we spent our time in bathing suits. me, in my swim-team-style speedo one-piece, and heather in her much more flattering filled out teen suit. we were literally a foot apart in height, and i looked like her much younger cousin. this was the first summer of about the next 4 that i felt invisible. and it's a bad feeling- to not exist.
the next summer, we went on a missions trip to peru with our youth group. we were 2 of three girls and 17 boys. our youth group leader had a major crush on heather, as did at least 16 of the 17 boys. it was an intense 3 weeks and we all got really close with each other. heather was nicknamed "mona lisa" by the boys. because she was 'perfect, but not likely to get any better'. i was nicknamed "potential". (which i guess is better than "hopeless").
what i remember, is feeling incredibly conflicted. i so loved her and just wanted things to be the way they were - when it was us with out all the externals. i hated how deeply jealous i'd become of her- with her height and her boobs and her newly acquired ability to flirt. i hated the annoying way everyone oogled her where ever we went, and how she seemed to love it but deny it all at once. i hated most of all- the distance that i felt from her- because i didn't get her, and i knew she really didn't get my perspective. we laughed less and we fought more, but we still laughed more than most people- and that was something.
i think the third summer, she had a boyfriend. while this entered in a whole new level of envy, it was somehow better- because she'd become comfortable in her new skin and suddenly i was thrown into the world of boys- which really, with out her, was unlikely at that point. i was the cute little friend of the girl with the boyfriend- a step up from "potential".
it was hard that most of the boys i was interested in, were much more interested in her- which of course, didn't make me want to introduce her- but again the conflict- because of course i wanted them to meet- she was like my other half.
by the next summer, i'd finally grown several inches and some breasts, had my braces off,and had a boyfriend too- and the playing field was even again. of course, before, there hadn't even been a game.
this is not unique- everyone goes through the teen years- everyone feels jealous and left out and competitive. but it is kind of funny and painful- to relive a much more magnified version, with our daughters in there early 'tweens.
this is a tricky thing about parenting- separating your junk from their junk- and not assuming you have the same junk.
last week jude had his first t-ball practice. (this deserves it's own blog post) but it was the same issue for me- snipping my baggage from what is his life. basically, he hated t-ball. he felt bad, stressed, miserable, afraid, guilty (like he was supposed to like it), and any other negative emotion you could drum up. it was so sad for me to watch, because i love that kid so much! it didn't help that i was the only mom there with a bunch of overly enthusiastic dads, that my kid didn't even know how to get his glove on, and that i had the other two kids distracting me. i didn't help that i happened to be wearing a miniskirt and a white wife beater- so i couldn't sit down in the grass and looked questionable- in an erin brachovic sort-of-way. but what was really awful was that i felt that jude- my old-souled child, felt pushed when not ready, felt that his dislike was somehow a disappointment (which is wasn't) and it was the first time that i ever saw him with that 'shamed thing. like recognizing he had no clothes in the garden of eden.
and i wondered at what point in our parental consciousness do we become 'self-aware' for our kids. at what point as parents do we think differently of our children- in an 'i remember that feeling- yuck' sort of way. when a 1 year old is scared to try something new at the playground and starts to cry and reach for mom- everyone laughs and comforts him and says, "oh, it's ok- he must not be ready!" and life goes on and no one even remembers it- or writes about it! but a few years later- it carries all this meaning- drama. jude at t-ball was like the flying practice scene from rudolf the red-nosed reindeer.
so watching our children grow up and become people is hard- fun- and full of beautiful agonies. now we have moved away from the business of making babies and into the world of making people. how we respond to those yucky, shamey feelings at t-ball or with the jealousy of beautiful best friends especially in the setting of social learning challenges, is so much bigger than what stroller to buy, whether we should have an epidural, or how much preschool TV is appropriate. and it's that much harder, because lets face it, we don't remember exactly how much TV we watched as kids, but we know how deeply felt are those feelings of becoming real- finding ourselves- forming our identities. we remember the words our parents said, or didn't say; what they felt or what we interpreted that they felt, we took it all in, digested it, and added it to our person. now- as parents- we start to re-live it and sometimes to go back to those places in us that can even still be tender if we're honest. but we have the opportunity to know this and filter our our junk before we help them interpret their worlds, and we have the blessing of being able to relate- and to share our stories.
so maybe four years of being the flat-chested short girl was worth it. maybe watching my little blonde brother struggle with little league was valuable too.
maybe becoming "mom" from "mama" isn't so bad after all.
we just got back from camping in north georgia- it was beautiful- filled with kids and fireflies and freedom and marshmallows and tents and all that stuff that unites us. grownups, kids, nature.
but on saturday morning before we left, i was not feeling that. i was so stressed. we had so much to do, to pack- you know, kids and travel. but mostly, honestly, it was because of zoe. of where she already was. of how she almost always is with her best friend lily, the daughter of one of my oldest and best friends. it's so ironic. that my sister-friend, zoe's God-mother; and her daughter, who is the closest in age to my daughter of all my friends kids; are the people that zoe has the hardest time with. maybe its the passion- the intensity of loving someone who you feel competitive with, loving someone you're jealous of, loving someone who you feel you should be able to so closely relate to, yet your differences are palpable. maybe it's likely looking the mirror and seeing what you're not.
i can totally relate.
because a similar dynamic existed between her mother and me when we were growing up.
heather was my closest friend. we met at church when we were six, lived about 45 minutes apart and spent as many friday afternoons as we could convincing our mothers to meet at the 'half way point' and let us spend the weekend together at one of the houses- until sunday morning. pretty much, all we did was laugh. a lot. we turned everything into funny. we never had stress or competition with other friends because we didn't go to school together, or live in the same town. things were pretty great for us for about 7 years. then we hit puberty, or atleast heather did. and thus began the great divide.
she was tall, blonde, beautiful and had breasts. i was short, brown haired, flat chested and had braces. it was pretty bad- for me. it was also the summer that we decided to travel across the country together-to visit our grandparents houses, both couples lived on the beach and so we spent our time in bathing suits. me, in my swim-team-style speedo one-piece, and heather in her much more flattering filled out teen suit. we were literally a foot apart in height, and i looked like her much younger cousin. this was the first summer of about the next 4 that i felt invisible. and it's a bad feeling- to not exist.
the next summer, we went on a missions trip to peru with our youth group. we were 2 of three girls and 17 boys. our youth group leader had a major crush on heather, as did at least 16 of the 17 boys. it was an intense 3 weeks and we all got really close with each other. heather was nicknamed "mona lisa" by the boys. because she was 'perfect, but not likely to get any better'. i was nicknamed "potential". (which i guess is better than "hopeless").
what i remember, is feeling incredibly conflicted. i so loved her and just wanted things to be the way they were - when it was us with out all the externals. i hated how deeply jealous i'd become of her- with her height and her boobs and her newly acquired ability to flirt. i hated the annoying way everyone oogled her where ever we went, and how she seemed to love it but deny it all at once. i hated most of all- the distance that i felt from her- because i didn't get her, and i knew she really didn't get my perspective. we laughed less and we fought more, but we still laughed more than most people- and that was something.
i think the third summer, she had a boyfriend. while this entered in a whole new level of envy, it was somehow better- because she'd become comfortable in her new skin and suddenly i was thrown into the world of boys- which really, with out her, was unlikely at that point. i was the cute little friend of the girl with the boyfriend- a step up from "potential".
it was hard that most of the boys i was interested in, were much more interested in her- which of course, didn't make me want to introduce her- but again the conflict- because of course i wanted them to meet- she was like my other half.
by the next summer, i'd finally grown several inches and some breasts, had my braces off,and had a boyfriend too- and the playing field was even again. of course, before, there hadn't even been a game.
this is not unique- everyone goes through the teen years- everyone feels jealous and left out and competitive. but it is kind of funny and painful- to relive a much more magnified version, with our daughters in there early 'tweens.
this is a tricky thing about parenting- separating your junk from their junk- and not assuming you have the same junk.
last week jude had his first t-ball practice. (this deserves it's own blog post) but it was the same issue for me- snipping my baggage from what is his life. basically, he hated t-ball. he felt bad, stressed, miserable, afraid, guilty (like he was supposed to like it), and any other negative emotion you could drum up. it was so sad for me to watch, because i love that kid so much! it didn't help that i was the only mom there with a bunch of overly enthusiastic dads, that my kid didn't even know how to get his glove on, and that i had the other two kids distracting me. i didn't help that i happened to be wearing a miniskirt and a white wife beater- so i couldn't sit down in the grass and looked questionable- in an erin brachovic sort-of-way. but what was really awful was that i felt that jude- my old-souled child, felt pushed when not ready, felt that his dislike was somehow a disappointment (which is wasn't) and it was the first time that i ever saw him with that 'shamed thing. like recognizing he had no clothes in the garden of eden.
and i wondered at what point in our parental consciousness do we become 'self-aware' for our kids. at what point as parents do we think differently of our children- in an 'i remember that feeling- yuck' sort of way. when a 1 year old is scared to try something new at the playground and starts to cry and reach for mom- everyone laughs and comforts him and says, "oh, it's ok- he must not be ready!" and life goes on and no one even remembers it- or writes about it! but a few years later- it carries all this meaning- drama. jude at t-ball was like the flying practice scene from rudolf the red-nosed reindeer.
so watching our children grow up and become people is hard- fun- and full of beautiful agonies. now we have moved away from the business of making babies and into the world of making people. how we respond to those yucky, shamey feelings at t-ball or with the jealousy of beautiful best friends especially in the setting of social learning challenges, is so much bigger than what stroller to buy, whether we should have an epidural, or how much preschool TV is appropriate. and it's that much harder, because lets face it, we don't remember exactly how much TV we watched as kids, but we know how deeply felt are those feelings of becoming real- finding ourselves- forming our identities. we remember the words our parents said, or didn't say; what they felt or what we interpreted that they felt, we took it all in, digested it, and added it to our person. now- as parents- we start to re-live it and sometimes to go back to those places in us that can even still be tender if we're honest. but we have the opportunity to know this and filter our our junk before we help them interpret their worlds, and we have the blessing of being able to relate- and to share our stories.
so maybe four years of being the flat-chested short girl was worth it. maybe watching my little blonde brother struggle with little league was valuable too.
maybe becoming "mom" from "mama" isn't so bad after all.
Monday, June 7, 2010
thank you
i want to thank you and apologize. especially to candie.
i want thank those of you who read this and respond, who are out there somewhere, and "get it", whether you have a zoe or not, who also try to be still and know.
it means so much- to be able to share and connect- and it really helps me to process my days, our life. and to know that sometimes our experience helps others feel less alone- that is the grace.
and i want to apologize for my technical ineptitude. i have tried, really tried to respond to all the comments- and i still haven't figured it out!! it even looks like it will post my reply, but it doesn't! so forgive me- and feel free to help me- if you know how. but please know your words are so valued and received and appreciated- and someday i know i'll figure it out!
so thank you deeply.
i want thank those of you who read this and respond, who are out there somewhere, and "get it", whether you have a zoe or not, who also try to be still and know.
it means so much- to be able to share and connect- and it really helps me to process my days, our life. and to know that sometimes our experience helps others feel less alone- that is the grace.
and i want to apologize for my technical ineptitude. i have tried, really tried to respond to all the comments- and i still haven't figured it out!! it even looks like it will post my reply, but it doesn't! so forgive me- and feel free to help me- if you know how. but please know your words are so valued and received and appreciated- and someday i know i'll figure it out!
so thank you deeply.
Sunday, June 6, 2010
how we write the story
i want to trade mine in for a new one.
yes i'm talking about my daughter.
today, i just want a neuro-typical 10 year old. i don't want to have to have to spend a hour and then have mike spend an hour talking out how to not say to some one, "is your dog about to die?" and then deal with all the dis-ease that comes with that. her anger at having to be told what is socially correct, her anger at not knowing, her anger at me for telling her that- for disrupting her perfectly constructed day of good feelings. she hates negative feelings- when they come, she is like someone teetering on the edge- and if pushed over - she'll ride the downward spiral into the dark place, a place of facing the things she likes to not think about, like having a nonverbal learning disorder, and having a hard time understanding the subtleties of language and expression.
she fell hard. and i sat on the bed while she sat in the rocking chair yelling,
"i hate my brain! i want a new one! fix it- you're a doctor! fix my brain- i need a surgeont" it probably wasn't the right time to correct her and say "it's surgeon not surgeont", but i couldn't help it.
and when i told her that she had a good brain- it became, " i hate being ten- ten is a stupid age- why did i ever have to turn ten!" it's always blame- something else is responsible for her feelings. and as i'm listening to her, i'm having a little bit of an out-of-body experience. part of me wants to laugh as the level of drama and part of me was so overly annoyed because i wanted us all to go to the summer festival in our neighborhood, and part of me was annoyed at the same thing she was dealing with. i was so angry at her brain too. so mad that things don't come naturally to her, that i have to teach her what to say, and then deal with the fall out of that.
after my hour of trying - i realized i was done and getting no where fast- so i took the boys to the festival and mike and zoe met us after another hour of her crying through her bad place. at that point, i was hot and bothered- cranky but trying.
at the festival her music school had a stage and her teacher asked if she wanted to play-
"oh dear God" i thought- not today- today we're teetering- today might be disastrous.
her teacher asked what she wanted to play?
silent night
it's june
oh- yankee doodle
and with that, she just hopped up and started to play, in a very flexible way- she made a few mistakes- but roled with it- she even fell getting off stage and landed on the keyboard, making a very dramatic exit, but didn't even care- it was like no big deal.
and this is the mystery of this child. she had a complete meltdown over being told what might not be a good thing to say, in the privacy of her own home. but has no fear or anxiety about getting on a stage, with out any preparation and playing piano- doesn't get phased by error or even care that she fell off the stage. not perfect- but ok with her mistakes. i would never have been able to do that. but the fact is, it could have been reversed- on another day. she could have thrown a fit on stage and pounded the keyboard and cried, and not cared about being corrected in conversation.
from what i remember from psychiatry rotations, stress is significantly exacerbated by unpredictability. humans can deal pretty well, even with really hard and terrible stuff, when we know when it's coming. high stress comes from not knowing when the ball will drop- not knowing when your brain won't be able to do math- or when you can't formulate your idea with words- or when your daughter might loose it.
when we left the festival mike took the boys home, and zoe and i went off so she could buy something with her money. but nothing at the art festival was under 8 dollars. we finally found a little store and after much debate she settled on a set of glitter animal "silly bands".
i tried to convince her to buy the 'fairydust'- but she wasn't interested- rats!
i'm thinking "phew" these are what a "normal" 10 year old girl would buy (maybe 8 year old, but close enough). we managed to escape another tiny stuffed animal or plastic princess crown, or wind up toy. but did zoe want to wear them on her wrist? no - she wanted to play with them, to line them up and count them, to have them have conversations with each other- to compare their features. now we were at the ice cream store, (she had the non-dairy sorbet- delicious) and in front of us are three girls her age. they're wearing armfuls of silly bands. they have shirts written on or signed by their friends, they're just hanging out.
i felt that heart pang. that longing- for normal- that feeling of feeling sorry for us. followed quickly by guilt and then sadness at my short sightedness- my human simplicity- my inability to ride it out- to have her bravery. i want to stand on the stage of my life- and be ok with not-normal, with "different, not less" and believe it.
most days, thankfully, aren't like this. most days i see her for her beautiful, amazing, interesting self- with out a thought of comparison. most days i don't think of "normal or not normal". and in reflection, i'm acutely aware of my disability, my weakness, the parts of my heart that are hard, selfish; much more so than hers.
she's working through the really hard stuff of her life. she's becoming her own. i need to spend more time re-framing it for me and letting her just be.
because really...
she spent the morning, grieving her challenge with appropriate social communication- and her ten year old desire for independence from her parents.
she then pulled it together- had fun and hung out with a friend at the festival, and played her first piano gig- she bought some age-appropriate toys and was very creative in her use of them.
it's all in how we write the story-
yes i'm talking about my daughter.
today, i just want a neuro-typical 10 year old. i don't want to have to have to spend a hour and then have mike spend an hour talking out how to not say to some one, "is your dog about to die?" and then deal with all the dis-ease that comes with that. her anger at having to be told what is socially correct, her anger at not knowing, her anger at me for telling her that- for disrupting her perfectly constructed day of good feelings. she hates negative feelings- when they come, she is like someone teetering on the edge- and if pushed over - she'll ride the downward spiral into the dark place, a place of facing the things she likes to not think about, like having a nonverbal learning disorder, and having a hard time understanding the subtleties of language and expression.
she fell hard. and i sat on the bed while she sat in the rocking chair yelling,
"i hate my brain! i want a new one! fix it- you're a doctor! fix my brain- i need a surgeont" it probably wasn't the right time to correct her and say "it's surgeon not surgeont", but i couldn't help it.
and when i told her that she had a good brain- it became, " i hate being ten- ten is a stupid age- why did i ever have to turn ten!" it's always blame- something else is responsible for her feelings. and as i'm listening to her, i'm having a little bit of an out-of-body experience. part of me wants to laugh as the level of drama and part of me was so overly annoyed because i wanted us all to go to the summer festival in our neighborhood, and part of me was annoyed at the same thing she was dealing with. i was so angry at her brain too. so mad that things don't come naturally to her, that i have to teach her what to say, and then deal with the fall out of that.
after my hour of trying - i realized i was done and getting no where fast- so i took the boys to the festival and mike and zoe met us after another hour of her crying through her bad place. at that point, i was hot and bothered- cranky but trying.
at the festival her music school had a stage and her teacher asked if she wanted to play-
"oh dear God" i thought- not today- today we're teetering- today might be disastrous.
her teacher asked what she wanted to play?
silent night
it's june
oh- yankee doodle
and with that, she just hopped up and started to play, in a very flexible way- she made a few mistakes- but roled with it- she even fell getting off stage and landed on the keyboard, making a very dramatic exit, but didn't even care- it was like no big deal.
and this is the mystery of this child. she had a complete meltdown over being told what might not be a good thing to say, in the privacy of her own home. but has no fear or anxiety about getting on a stage, with out any preparation and playing piano- doesn't get phased by error or even care that she fell off the stage. not perfect- but ok with her mistakes. i would never have been able to do that. but the fact is, it could have been reversed- on another day. she could have thrown a fit on stage and pounded the keyboard and cried, and not cared about being corrected in conversation.
from what i remember from psychiatry rotations, stress is significantly exacerbated by unpredictability. humans can deal pretty well, even with really hard and terrible stuff, when we know when it's coming. high stress comes from not knowing when the ball will drop- not knowing when your brain won't be able to do math- or when you can't formulate your idea with words- or when your daughter might loose it.
when we left the festival mike took the boys home, and zoe and i went off so she could buy something with her money. but nothing at the art festival was under 8 dollars. we finally found a little store and after much debate she settled on a set of glitter animal "silly bands".
i tried to convince her to buy the 'fairydust'- but she wasn't interested- rats!
i'm thinking "phew" these are what a "normal" 10 year old girl would buy (maybe 8 year old, but close enough). we managed to escape another tiny stuffed animal or plastic princess crown, or wind up toy. but did zoe want to wear them on her wrist? no - she wanted to play with them, to line them up and count them, to have them have conversations with each other- to compare their features. now we were at the ice cream store, (she had the non-dairy sorbet- delicious) and in front of us are three girls her age. they're wearing armfuls of silly bands. they have shirts written on or signed by their friends, they're just hanging out.
i felt that heart pang. that longing- for normal- that feeling of feeling sorry for us. followed quickly by guilt and then sadness at my short sightedness- my human simplicity- my inability to ride it out- to have her bravery. i want to stand on the stage of my life- and be ok with not-normal, with "different, not less" and believe it.
most days, thankfully, aren't like this. most days i see her for her beautiful, amazing, interesting self- with out a thought of comparison. most days i don't think of "normal or not normal". and in reflection, i'm acutely aware of my disability, my weakness, the parts of my heart that are hard, selfish; much more so than hers.
she's working through the really hard stuff of her life. she's becoming her own. i need to spend more time re-framing it for me and letting her just be.
because really...
she spent the morning, grieving her challenge with appropriate social communication- and her ten year old desire for independence from her parents.
she then pulled it together- had fun and hung out with a friend at the festival, and played her first piano gig- she bought some age-appropriate toys and was very creative in her use of them.
it's all in how we write the story-
Friday, June 4, 2010
teaching the gray
i shouldn't be writing- i should be sitting on the couch with Jude who is 104 degrees. but the little one is asleep and zoe is at brain balance with mike- so i will have a brief moment of ...ahhh - with my coffee.
i was thinking about the last few days with zoe and the comedy of her seemingly different behavior depending on my posts. i'd write she's doing awfully and she then she'd have a great day- etc. and i realized the apple doesn't fall far- or perhaps the apple is significantly influenced by the tree. the fact that i dichotomize her behavior into all good or all bad is so not helpful. and here i am, trying to teach her to live in the gray- to be less extreme-
really kris? really?
i think i need to spend some more time being still. i think i need to be more accepting of where we are "now", where ever that is, and less concerned with it's overall significance. because really there are good and bad moments in every day- in every hour. sometimes i hear zoe emphatically say, "this is the worst day of my whole entire life!" , usually spurred on by something like not being able to get her shirt buttoned. and i find myself trying to re--frame it for her. dissecting the day - so she will see that what feels like the end of the world, or is enough to classify as a bad day, is really only a bad moment, and that there have been good moments as well, often more so than the bad ones. trying to regulate response- to learn to judge the level of drama.
and that is the humility of parenting. it's kind of like looking in the mirror when you don't want to. seeing all of your own struggles and issues in your child. hearing yourself 'teach' them the right way, while you're working on it yourself. i'm horribly dramatic with those nearest to me. mike reminds me all the time- even in my writings here. it's all or nothing- we're on the road to recovery or we're doomed to a life of endless therapy and lesson repeats.
I said to my soul, be still and wait without hope
For hope would be for the wrong thing; wait without love
For love would be love of the wrong thing; there is yet faith
But the faith and the love and the hope are all in the waiting.
Wait without thought, for you are not ready for thought:
So the darkness shall be the light, and the stillness the dancing.
T. S. Eliot, Four Quartets
just be. take it as it comes. when it rains, let it rain. chances are we'll be in a similar place next month, and next year- because life isn't black and white- but i think it's more than gray. i think it's blue and green- like joni mitchell sings. it's not a box with sharp corners, it's bendy and flexible and surprising.
and it feels so much better to be in this place.
i was thinking about the last few days with zoe and the comedy of her seemingly different behavior depending on my posts. i'd write she's doing awfully and she then she'd have a great day- etc. and i realized the apple doesn't fall far- or perhaps the apple is significantly influenced by the tree. the fact that i dichotomize her behavior into all good or all bad is so not helpful. and here i am, trying to teach her to live in the gray- to be less extreme-
really kris? really?
i think i need to spend some more time being still. i think i need to be more accepting of where we are "now", where ever that is, and less concerned with it's overall significance. because really there are good and bad moments in every day- in every hour. sometimes i hear zoe emphatically say, "this is the worst day of my whole entire life!" , usually spurred on by something like not being able to get her shirt buttoned. and i find myself trying to re--frame it for her. dissecting the day - so she will see that what feels like the end of the world, or is enough to classify as a bad day, is really only a bad moment, and that there have been good moments as well, often more so than the bad ones. trying to regulate response- to learn to judge the level of drama.
and that is the humility of parenting. it's kind of like looking in the mirror when you don't want to. seeing all of your own struggles and issues in your child. hearing yourself 'teach' them the right way, while you're working on it yourself. i'm horribly dramatic with those nearest to me. mike reminds me all the time- even in my writings here. it's all or nothing- we're on the road to recovery or we're doomed to a life of endless therapy and lesson repeats.
I said to my soul, be still and wait without hope
For hope would be for the wrong thing; wait without love
For love would be love of the wrong thing; there is yet faith
But the faith and the love and the hope are all in the waiting.
Wait without thought, for you are not ready for thought:
So the darkness shall be the light, and the stillness the dancing.
T. S. Eliot, Four Quartets
just be. take it as it comes. when it rains, let it rain. chances are we'll be in a similar place next month, and next year- because life isn't black and white- but i think it's more than gray. i think it's blue and green- like joni mitchell sings. it's not a box with sharp corners, it's bendy and flexible and surprising.
and it feels so much better to be in this place.
Wednesday, June 2, 2010
how far
so maybe i'm wrong. maybe she is better off dairy. maybe it's the fairy dust again. maybe if i write the bad stuff, the good follows, and vice versa- so prepare for a lot of venting :).
the last two days have been great! and sandwiched in between was a conference call with one of the therapists from her social group. it was so good - to hear how far she's come this year, how comfortable she is in her own skin, that she's engaged and interactive in an appropriate way, that she even has leadership skills. God is good. there was also the affirmation that pulling her out of school was the right thing to do last year. and it reminded me of all that i'd forgotten last week when i was bogged down with worry about whether she'd learned enough about her verb tenses. i was reminded that you can always learn grammar, you can always learn more history and science, you can improve your math and reading- but you can't get back years of low self esteem. a broken self image. it's harder to make up for the inability to connect with your peers- those are the things that form us- that give us the confidence to learn and to apply our learning. suddenly i realized how far we've come and how no matter how hard it's been- we're the better for it. it's time we'll never regret. foundational. formative.
the ability to learn reciprocity- the understanding that we are separate from other people and that's OK- that we all have similar but never the exact experience: this is a challenge for zoe, and children with nvld. and to become accepting and embracing of this is hard- but it's happening and that is so exciting. self actualization- self acceptance. she's getting it! and i think this is part of where the intense desire for independence is coming from. she is realizing that she is her own. and it's that much harder for her - given this challenge of reciprocity.
tonight mike is out of town and i took the kids out for dinner. they were arguing over who got to color with which crayons- zoe's voice began to escalate- and i acknowledged it, she started to say, " i think i know that already" (her buzz words, her sticky words, words that usually mean were in for it) she stopped at "i think..." then zoe calmly said to me, "mommy- maybe you can let us work it out."
i love that. when she changes mid course. it's almost better than just getting it right initially- because i get a window into her brain. i get to hear the process- the correction.
the same thing happened at the zoo today. there were several situations where i was holding my breath- times when i had to be still and ride it out- hold my tongue, not intervene- when i could predict the meltdown- the stickiness- the confusion on the other childs face- the embarrassment. but i was still and i waited, and fortunately- i was wrong. she let it slide (whatever it was)- she knew when to hold it in and when to let it go. i was so proud of her- because while it doesn't look like anything to anyone else- i know how far she's come. i know she's forming new pathways- she's learning from her choices.
you go girl- blossom on into the flower you are and are meant to be- and as you bloom we will watch in amazement - water you with love and learn from your process.
the last two days have been great! and sandwiched in between was a conference call with one of the therapists from her social group. it was so good - to hear how far she's come this year, how comfortable she is in her own skin, that she's engaged and interactive in an appropriate way, that she even has leadership skills. God is good. there was also the affirmation that pulling her out of school was the right thing to do last year. and it reminded me of all that i'd forgotten last week when i was bogged down with worry about whether she'd learned enough about her verb tenses. i was reminded that you can always learn grammar, you can always learn more history and science, you can improve your math and reading- but you can't get back years of low self esteem. a broken self image. it's harder to make up for the inability to connect with your peers- those are the things that form us- that give us the confidence to learn and to apply our learning. suddenly i realized how far we've come and how no matter how hard it's been- we're the better for it. it's time we'll never regret. foundational. formative.
the ability to learn reciprocity- the understanding that we are separate from other people and that's OK- that we all have similar but never the exact experience: this is a challenge for zoe, and children with nvld. and to become accepting and embracing of this is hard- but it's happening and that is so exciting. self actualization- self acceptance. she's getting it! and i think this is part of where the intense desire for independence is coming from. she is realizing that she is her own. and it's that much harder for her - given this challenge of reciprocity.
tonight mike is out of town and i took the kids out for dinner. they were arguing over who got to color with which crayons- zoe's voice began to escalate- and i acknowledged it, she started to say, " i think i know that already" (her buzz words, her sticky words, words that usually mean were in for it) she stopped at "i think..." then zoe calmly said to me, "mommy- maybe you can let us work it out."
i love that. when she changes mid course. it's almost better than just getting it right initially- because i get a window into her brain. i get to hear the process- the correction.
the same thing happened at the zoo today. there were several situations where i was holding my breath- times when i had to be still and ride it out- hold my tongue, not intervene- when i could predict the meltdown- the stickiness- the confusion on the other childs face- the embarrassment. but i was still and i waited, and fortunately- i was wrong. she let it slide (whatever it was)- she knew when to hold it in and when to let it go. i was so proud of her- because while it doesn't look like anything to anyone else- i know how far she's come. i know she's forming new pathways- she's learning from her choices.
you go girl- blossom on into the flower you are and are meant to be- and as you bloom we will watch in amazement - water you with love and learn from your process.
