me and zoe on UCU campus
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under the bougainvillea
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| i found zoe outside reading with some guys |
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| cows going to pasture |
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mike and i
Friday, July 30, 2010
Monday, July 26, 2010
reach out
finally fell asleep last night to the sound of the rain and drums beating and in the distance, music. yesterday was wonderful. worlds better. i think zoe's adjusting. we went to an amazing ugandan church service yesterday morning, the music was half in english half in lugandan, everyone was smiling and swaying and clapping and there was so much joy in the air. the kids (of whom there were about 50) did a performance and afterwards zoe asked if she could go to sunday school and then trompsed off with all the little african children up the hill to the children's chapel. she did great.
we tried not to be nervous. we tried to trust. i must admit i kept looking back at the hill- hoping, praying and trying not to anticipate her little blond head running down the hill with her head in stickyland. but she stayed- she played, she did it.
we had lunch at a friends house- zoe went to play with 'her new friend michelle' and mike and i walked to town. mukono is a dusty little side road town on a very busy road. i think it's the only road between kamapala and kenya. there are lots of trucks and no emissions testing on any vehicle. and there are no sidewalks, no crosswalks, no lights, no order. the people there are working hard- the children are wearing old t-shirts from the usa. it's not pretty or quaint. it's poor. but it is life- for most of the world.
today i went to Reach Out Mbuya to work in the HIV/AIDS clinic. i had been there 6 years ago working and then again 2 years ago for a visit. this is the place where i feel most alive. it is the place where i am most thankful for my profession- thankful that i'm doctor and have a skill that i love and that is useful- across the world.
on the way there- we passed through many streets and backroads that make mukono look like disneyland. so much poverty. tin roofs on mud shacks with dirty water and trash and kids playing barefoot in that water. goats running down the street. roosters crowing. meat hanging from palm brances with flies, and people selling anything they seem to have from the front of their houses.
Reach Out clinic starts each morning at 8 am with yoga- i'm not kidding. it's a holistic model- the clients and the staff- do yoga for about 20 minutes then clinic starts. we saw many many patients all with HIV, in different stages of illness- some for follow up and some for acute issues. we sat on plastic lawn furniture on cement floors with fabric half-dividers between us and filled out paper charts. we talked and examined and ordered and read x-rays- a man with fecal impaction- a young woman with disseminated kaposi's sarcoma-acute pneumonia- a few cases of malaria. a woman carried in, too weak to walk, with profuse diarrhea and vomiting, dehydrated and wasting away- with obvious AIDS, but no actual diagnosis. an 11 year old girl, in her school uniform, in clinic alone, who is failing anti-retroviral therapy- her cd4 count is dropping on medicine. where is her mother? is she still alive? i gave her a lollipop- because it was the best i could do.
i learned a few lugandan words; pain, cough, sputum and thank you. (that should serve me well touring around the city.) it felt real- it was as i'd remembered it to feel- like for some reason i had found my skin. but then that kind of made me sad. how does this reality mesh with my current reality? how can i do international medicine and homeschool a girl with special needs? what is my "calling"?
so i left today satisfied, confused, eagar for more, saddened by this illness. i left wondering about lots of things on the big and small scale. about injustice and fate, and choices and the non-choices in life- the things we're handed. about coping and still smiling. about how it's just shades of blue.
now it's dark again, there are tree frogs and drums in the distance.
we tried not to be nervous. we tried to trust. i must admit i kept looking back at the hill- hoping, praying and trying not to anticipate her little blond head running down the hill with her head in stickyland. but she stayed- she played, she did it.
we had lunch at a friends house- zoe went to play with 'her new friend michelle' and mike and i walked to town. mukono is a dusty little side road town on a very busy road. i think it's the only road between kamapala and kenya. there are lots of trucks and no emissions testing on any vehicle. and there are no sidewalks, no crosswalks, no lights, no order. the people there are working hard- the children are wearing old t-shirts from the usa. it's not pretty or quaint. it's poor. but it is life- for most of the world.
today i went to Reach Out Mbuya to work in the HIV/AIDS clinic. i had been there 6 years ago working and then again 2 years ago for a visit. this is the place where i feel most alive. it is the place where i am most thankful for my profession- thankful that i'm doctor and have a skill that i love and that is useful- across the world.
on the way there- we passed through many streets and backroads that make mukono look like disneyland. so much poverty. tin roofs on mud shacks with dirty water and trash and kids playing barefoot in that water. goats running down the street. roosters crowing. meat hanging from palm brances with flies, and people selling anything they seem to have from the front of their houses.
Reach Out clinic starts each morning at 8 am with yoga- i'm not kidding. it's a holistic model- the clients and the staff- do yoga for about 20 minutes then clinic starts. we saw many many patients all with HIV, in different stages of illness- some for follow up and some for acute issues. we sat on plastic lawn furniture on cement floors with fabric half-dividers between us and filled out paper charts. we talked and examined and ordered and read x-rays- a man with fecal impaction- a young woman with disseminated kaposi's sarcoma-acute pneumonia- a few cases of malaria. a woman carried in, too weak to walk, with profuse diarrhea and vomiting, dehydrated and wasting away- with obvious AIDS, but no actual diagnosis. an 11 year old girl, in her school uniform, in clinic alone, who is failing anti-retroviral therapy- her cd4 count is dropping on medicine. where is her mother? is she still alive? i gave her a lollipop- because it was the best i could do.
i learned a few lugandan words; pain, cough, sputum and thank you. (that should serve me well touring around the city.) it felt real- it was as i'd remembered it to feel- like for some reason i had found my skin. but then that kind of made me sad. how does this reality mesh with my current reality? how can i do international medicine and homeschool a girl with special needs? what is my "calling"?
so i left today satisfied, confused, eagar for more, saddened by this illness. i left wondering about lots of things on the big and small scale. about injustice and fate, and choices and the non-choices in life- the things we're handed. about coping and still smiling. about how it's just shades of blue.
now it's dark again, there are tree frogs and drums in the distance.
Saturday, July 24, 2010
Greeting from Uganda
zoe, mike and i are in uganda- literally. not like in the first posting ever, where i re -write "landing in holland" to be "landing in uganda- the experience of raising a child with special needs" - but literally, uganda.
we got here after one short flight with the boys to boston, to drop them with mikes parents; one long flight to amsterdam, and one long-er flight to uganda, followed by two hours of customs and diesel fumed car rides in the dark on dirt roads with few head lights but lots of traffic. we arrived to the little guest house at the uganda christain university, where pinapples and toast and tea awaited us. where we were welcomed by birds that caw like monkeys and bougainvillea in every color. and despite thousands of miles and planes, trains and car rides, despite other languages and cultural differences and not having a real shower, the toughest thing about being in uganda this time, is the same thing that's hard about atlanta- zoe.
why am i surprised? really. did i think the over the ocean flight would de-stick her? or that we'd magically go back to last time we were here with her, when she was 4 and just retreated into her own mind to escape her overwhelm? i think i was experiencing magical thinking.
right now mike is in the other room with her discussing our dinner with her new friend michelle- a beautiful 10 year old ugandan girl- an orphan recently adopted, who has clearly experienced much more loss than zoe has in her life- yet- she has her brain, which appears to function normally. we had her over for dinner tonight and zoe launched into a conversation about servants in 1904-which we tried to brush under the rug. she had already spent a while showing michelle her ipod shuffle, and telling her about american girl dolls, how expensive they are, that she has 2, and then apparently tried to explain the civil war. someone please teach me how to teach a class on the subtlies of cultural competancy to a child who has no, and i mean no, innate awareness.
i mean in some ways, God bless her, for jumping right in.
hi i'm zoe. we're both 10, and instead of discussing what we like to play, i'll point out that i'm a white american and you are a black african and then tell you all about the intense and horrible history of race relations in my country, but forget to report how the civil war ended or how we believe things ought to be, and how far we've come.
but really, when you try to dissect out what the human brain does naturally, how it absorbs and processes and intuits with out being taught- i'm only once again convinced of and humbled by the God who made us. this stuff isn't supposed to have to be taught!
but this isn't the hard part. the hard part is the hours (literally) of discussions we've had about her unarticulatable frustration with this inability. her "I KNOW!" must really be, " I WISH I KNEW!" but she can't say that. and how can you get mad at someone for what they just don't get- yet it is so maddening, especially because none of it is isolated- each moment for me has a past and a future. so it's especially hard and important for me to be here now. because in the crass words of my first boyfriend, "if you have one foot in yesterday and one foot in tomorrow, you'll just pee all over today".
so around the world- the moon is the same and our lives are the same- only with out two adorable little blond heads. and with out a run today, i can still say i'm thankful. so thankful for being here- for being able to go back to the clinic i love and help out, for connecting with friends who live here, for having this time with mike and zoe, to have the hard talks, the time to let her cry with out having to rush off and go somewhere, and a chance for her to experience a different life- and learn from it.
maybe we can re-write my old friends words, "if you have one arm in yesterday and one arm in tomorrow- you're ready for a hug today."
thanks for listening.
we got here after one short flight with the boys to boston, to drop them with mikes parents; one long flight to amsterdam, and one long-er flight to uganda, followed by two hours of customs and diesel fumed car rides in the dark on dirt roads with few head lights but lots of traffic. we arrived to the little guest house at the uganda christain university, where pinapples and toast and tea awaited us. where we were welcomed by birds that caw like monkeys and bougainvillea in every color. and despite thousands of miles and planes, trains and car rides, despite other languages and cultural differences and not having a real shower, the toughest thing about being in uganda this time, is the same thing that's hard about atlanta- zoe.
why am i surprised? really. did i think the over the ocean flight would de-stick her? or that we'd magically go back to last time we were here with her, when she was 4 and just retreated into her own mind to escape her overwhelm? i think i was experiencing magical thinking.
right now mike is in the other room with her discussing our dinner with her new friend michelle- a beautiful 10 year old ugandan girl- an orphan recently adopted, who has clearly experienced much more loss than zoe has in her life- yet- she has her brain, which appears to function normally. we had her over for dinner tonight and zoe launched into a conversation about servants in 1904-which we tried to brush under the rug. she had already spent a while showing michelle her ipod shuffle, and telling her about american girl dolls, how expensive they are, that she has 2, and then apparently tried to explain the civil war. someone please teach me how to teach a class on the subtlies of cultural competancy to a child who has no, and i mean no, innate awareness.
i mean in some ways, God bless her, for jumping right in.
hi i'm zoe. we're both 10, and instead of discussing what we like to play, i'll point out that i'm a white american and you are a black african and then tell you all about the intense and horrible history of race relations in my country, but forget to report how the civil war ended or how we believe things ought to be, and how far we've come.
but really, when you try to dissect out what the human brain does naturally, how it absorbs and processes and intuits with out being taught- i'm only once again convinced of and humbled by the God who made us. this stuff isn't supposed to have to be taught!
but this isn't the hard part. the hard part is the hours (literally) of discussions we've had about her unarticulatable frustration with this inability. her "I KNOW!" must really be, " I WISH I KNEW!" but she can't say that. and how can you get mad at someone for what they just don't get- yet it is so maddening, especially because none of it is isolated- each moment for me has a past and a future. so it's especially hard and important for me to be here now. because in the crass words of my first boyfriend, "if you have one foot in yesterday and one foot in tomorrow, you'll just pee all over today".
so around the world- the moon is the same and our lives are the same- only with out two adorable little blond heads. and with out a run today, i can still say i'm thankful. so thankful for being here- for being able to go back to the clinic i love and help out, for connecting with friends who live here, for having this time with mike and zoe, to have the hard talks, the time to let her cry with out having to rush off and go somewhere, and a chance for her to experience a different life- and learn from it.
maybe we can re-write my old friends words, "if you have one arm in yesterday and one arm in tomorrow- you're ready for a hug today."
thanks for listening.
Monday, July 19, 2010
provisions
it was a day.
beautiful sun, a breeze, not to hot- the kind of day you're so glad you're alive.
it was a day of growth.
of the pendulum swinging and ending up in the right place. a day of grace. a day when i went to my dark place of abandon and then returned- stronger for it.
things were good until about noon.
we'd been at the pool for an hour or so- zoe had made a new friend named zoe who was learning how to swim. she patiently taught her- and gave her confidence and encouragement and the little girl did it. everyone was so happy and they swam around the pool together. it was good, perhaps too good. finally the boys were hungry and tired, but zoe decided she wanted to do a cannon ball. i don't even know what exactly she meant but i knew she'd never done it before and that by the sound of her voice, we were doomed. she was hovering over the side of the pool, toes curled in anxiety, flapping both wrists, as subtly as she could, and doing the self talk thing- "ok- you can do it, just move to the edge..." then flipping into the panicked "mom- am i going to hurt myself?" follow with "don't tell me - i KNOW what i'm doing!". i tried for about 15 minutes to 'help' with out helping. to be supportive and appear carefree, while i'm walking on eggshells- because she was beginning to unravel. calmly i told her that in fact we needed to go and that she was moving quickly into that place where she didn't want to be. that made her mad- and gave her something to channel all that negative energy into- me. she began to cry loudly and expressively that she was always the only one who can't do things. that she feels so badly that she can't do a cannon ball, that she NEEDS to do one now. that we CAN'T leave. that she WON'T leave. and the scene began..... her little brothers sensing the tension, obediently get out of the pool and get their shoes and towels.....people stare as her voice escalates and her frustration grows.... i long for my "she has a mild form of autism " sign, and acutely feel that pull between anger and pity and sorrow and the fear that this will get progressively worse. her little friend the new swimmer and her mother look puzzled and slightly anxious as well. and i'm hating it for her. for her overwhelm and her challenge. for not being able to get it together and just let it go. for the boys who are stuck with having "that kid" as their big sister. that kid who has fallen to bits.
and i want to cry because i've gone back to last summer, when i couldn't go to the pool with out this happening, and i've gone forward to tomorrow night when we're meeting people for dinner at the pool and i'm fearing this cannonball obsession all over again- and i'm exhausted by all of it, and thinking why me-poor me-poor, poor me.
the problem is, it becomes timeless. one 'little' incident, has histories and futures woven into it.
on the way to the car- i resolved that i couldn't do this anymore. that i needed to go back to work. that she needed to go to school- any school- maybe boarding school- in another country. i decided that i am no longer the man for the job. that i was already going to need years of therapy- and that even then- i may never recover. in my heart i yelled at God. i shook my fists. why is this so blinking hard!!! when will this ever end????
i was deflated, defeated and depressed. i put on my sunglasses and cried on the way home. zoe asked if this was because of her non-verbal learning disability. jude replied, yes- that is why you get sticky thoughts (the 5 year old therapist)- followed by saying, "and i have a yes-verbal learning disability" (the opposite of her) at which point i had to laugh. but i was too busy making my mental "i hate list" followed by my "i'm thankful list" which was much shorter, and i realized i had work to do.
when we got home and had lunch and the boys went to nap and zoe went to read- i got down to business- to what i do best- solve the problem. the left brain went into high gear and i got on line. i found every special ed school in the atlanta area and made lists, looked at websites, and made calls. i made an excel spread sheet and calculated the cost of school and what i'd earn going back to work. i felt productive- i felt hopeful- i felt in control- the opposite of how i felt at the pool.
so i ran upstairs to zoe and put it on her.
"zoe, do you want to be home schooled?"
desperately wanting, in that moment for her to say "no! thank God you finally asked. i want to be with other kids and teacher who's not nutballs!"
but i got, "mom, i'm reading!"
i thought about calling mike - sharing my data collection with him- venting about the pool/cannon ball episode- surely he'd see the light.
then i realized that i needed to just be still.
that acting or reacting out of fear is always the wrong choice. that much of my life i rush and re-act, i get pushed to a point and make a move out of fear or i put it on others to reign me in- usually mike. usually i make him do my dirty work. present him with my angst, and my hairball plan to get rid of it- and let him be the calm voice of reason. which sets up the dynamic of him as my saving grace and me as the wild overwhelmed scatterbrain.
but not today.
today, i reigned it in.
today, i was able to sit with it, alone. and in the stillness, i found what i was looking for. the answer was already there. the decision was made- by me. i am going to home school again next year- as scared as i am- because i love her, and we're not done.
"Be as a bird perched on a frail branch that she feels bending beneath her, still she sings away, all the same, knowing she has wings."
victor hugo
beautiful sun, a breeze, not to hot- the kind of day you're so glad you're alive.
it was a day of growth.
of the pendulum swinging and ending up in the right place. a day of grace. a day when i went to my dark place of abandon and then returned- stronger for it.
things were good until about noon.
we'd been at the pool for an hour or so- zoe had made a new friend named zoe who was learning how to swim. she patiently taught her- and gave her confidence and encouragement and the little girl did it. everyone was so happy and they swam around the pool together. it was good, perhaps too good. finally the boys were hungry and tired, but zoe decided she wanted to do a cannon ball. i don't even know what exactly she meant but i knew she'd never done it before and that by the sound of her voice, we were doomed. she was hovering over the side of the pool, toes curled in anxiety, flapping both wrists, as subtly as she could, and doing the self talk thing- "ok- you can do it, just move to the edge..." then flipping into the panicked "mom- am i going to hurt myself?" follow with "don't tell me - i KNOW what i'm doing!". i tried for about 15 minutes to 'help' with out helping. to be supportive and appear carefree, while i'm walking on eggshells- because she was beginning to unravel. calmly i told her that in fact we needed to go and that she was moving quickly into that place where she didn't want to be. that made her mad- and gave her something to channel all that negative energy into- me. she began to cry loudly and expressively that she was always the only one who can't do things. that she feels so badly that she can't do a cannon ball, that she NEEDS to do one now. that we CAN'T leave. that she WON'T leave. and the scene began..... her little brothers sensing the tension, obediently get out of the pool and get their shoes and towels.....people stare as her voice escalates and her frustration grows.... i long for my "she has a mild form of autism " sign, and acutely feel that pull between anger and pity and sorrow and the fear that this will get progressively worse. her little friend the new swimmer and her mother look puzzled and slightly anxious as well. and i'm hating it for her. for her overwhelm and her challenge. for not being able to get it together and just let it go. for the boys who are stuck with having "that kid" as their big sister. that kid who has fallen to bits.
and i want to cry because i've gone back to last summer, when i couldn't go to the pool with out this happening, and i've gone forward to tomorrow night when we're meeting people for dinner at the pool and i'm fearing this cannonball obsession all over again- and i'm exhausted by all of it, and thinking why me-poor me-poor, poor me.
the problem is, it becomes timeless. one 'little' incident, has histories and futures woven into it.
on the way to the car- i resolved that i couldn't do this anymore. that i needed to go back to work. that she needed to go to school- any school- maybe boarding school- in another country. i decided that i am no longer the man for the job. that i was already going to need years of therapy- and that even then- i may never recover. in my heart i yelled at God. i shook my fists. why is this so blinking hard!!! when will this ever end????
i was deflated, defeated and depressed. i put on my sunglasses and cried on the way home. zoe asked if this was because of her non-verbal learning disability. jude replied, yes- that is why you get sticky thoughts (the 5 year old therapist)- followed by saying, "and i have a yes-verbal learning disability" (the opposite of her) at which point i had to laugh. but i was too busy making my mental "i hate list" followed by my "i'm thankful list" which was much shorter, and i realized i had work to do.
when we got home and had lunch and the boys went to nap and zoe went to read- i got down to business- to what i do best- solve the problem. the left brain went into high gear and i got on line. i found every special ed school in the atlanta area and made lists, looked at websites, and made calls. i made an excel spread sheet and calculated the cost of school and what i'd earn going back to work. i felt productive- i felt hopeful- i felt in control- the opposite of how i felt at the pool.
so i ran upstairs to zoe and put it on her.
"zoe, do you want to be home schooled?"
desperately wanting, in that moment for her to say "no! thank God you finally asked. i want to be with other kids and teacher who's not nutballs!"
but i got, "mom, i'm reading!"
i thought about calling mike - sharing my data collection with him- venting about the pool/cannon ball episode- surely he'd see the light.
then i realized that i needed to just be still.
that acting or reacting out of fear is always the wrong choice. that much of my life i rush and re-act, i get pushed to a point and make a move out of fear or i put it on others to reign me in- usually mike. usually i make him do my dirty work. present him with my angst, and my hairball plan to get rid of it- and let him be the calm voice of reason. which sets up the dynamic of him as my saving grace and me as the wild overwhelmed scatterbrain.
but not today.
today, i reigned it in.
today, i was able to sit with it, alone. and in the stillness, i found what i was looking for. the answer was already there. the decision was made- by me. i am going to home school again next year- as scared as i am- because i love her, and we're not done.
"Be as a bird perched on a frail branch that she feels bending beneath her, still she sings away, all the same, knowing she has wings."
victor hugo
Saturday, July 17, 2010
salt water
it's saturday, which means yesterday was friday, and i saw patients and taught fellows and went to meetings. one of my favorite patients came in- the one who is my age- the one who is dying, and is my age. she looked worse than i'd ever seen her- thin with a giant belly and legs filled with fluid, moving slowly with a new cane- and slightly yellow. i wanted to cry. there is something about caring for someone who is my age and dying that undoes me. i had to tell her it's time for hospice. i had to ask her where she wanted to be when she died. things we'd put off, needed answers. things she'd been thinking about, needed a voice. i hate when people ask me how they are going to die- what they are going to feel- what will happen to their bodies. it makes me feel like a phony. i can tell them what i've read- what i've seen- who knows what it really feels like. i asked her how she felt in her heart. she said OK- she's not scared- she doesn't want to be alone- or have pain. luckily she doesn't need to be alone or have pain. i hated saying goodbye because i won't see her for a month- or maybe never- so i hugged her a little longer and bit my lip. i'm leaving for uganda in 5 days- and will miss three fridays in a row. i'm afraid she won't be here when i get back. i'm afraid i'll miss her ending, and that hurts my heart.
it made my problems seem far smaller than they've seemed in a while.
we'd just got back from the beach at 10:30 the night before. the car trip- including a vomiting kid, a poop accident and a crying infant- and 9 hours in the car with 5 small children wasn't the hardest part. it had been a very up and down week for zoe- and thus the rest of us. it had been a week of me feeling really sorry for myself. of asking a lot of "why" and not saying enough "thank you". a week when i remember that as far as we've come, transitions remain hard for her, and that the beach which is full of sand, and noise and waves and salt and hot, bright sun, and unpredictable games to be played with other children, and sharp shells and birds- is asking a lot of a sensory overloaded kid. and i felt that pang of 'life will never be normal for us so why do we pretend'
so yesterday, i came home and ran- like forest gump -away and farther away- even though it was 100 degrees- and full humidity. i ran out my patient and friend's premature dying- i ran out my beach week with zoe in mild crisis mode- i ran out my inability to deal with my life in the put together way that i imagine i should. i ran until my water bottle was finished and i had nothing left and i couldn't cry because my body needed all the water and salt it had. i ran until i was thankful for the ability to run- for the gift of being able to care for sick people, and for the ocean and sand and salt and that i'm not overloaded by it. until i was thankful for zoe's ability to go into the waves sometimes, and also to know when to leave. and for the fact that life is a mystery and we don't know where it will really lead us next- but the path behind us helps prepare us. and the miracle that in all of it- we can find peace.
it made my problems seem far smaller than they've seemed in a while.
we'd just got back from the beach at 10:30 the night before. the car trip- including a vomiting kid, a poop accident and a crying infant- and 9 hours in the car with 5 small children wasn't the hardest part. it had been a very up and down week for zoe- and thus the rest of us. it had been a week of me feeling really sorry for myself. of asking a lot of "why" and not saying enough "thank you". a week when i remember that as far as we've come, transitions remain hard for her, and that the beach which is full of sand, and noise and waves and salt and hot, bright sun, and unpredictable games to be played with other children, and sharp shells and birds- is asking a lot of a sensory overloaded kid. and i felt that pang of 'life will never be normal for us so why do we pretend'
so yesterday, i came home and ran- like forest gump -away and farther away- even though it was 100 degrees- and full humidity. i ran out my patient and friend's premature dying- i ran out my beach week with zoe in mild crisis mode- i ran out my inability to deal with my life in the put together way that i imagine i should. i ran until my water bottle was finished and i had nothing left and i couldn't cry because my body needed all the water and salt it had. i ran until i was thankful for the ability to run- for the gift of being able to care for sick people, and for the ocean and sand and salt and that i'm not overloaded by it. until i was thankful for zoe's ability to go into the waves sometimes, and also to know when to leave. and for the fact that life is a mystery and we don't know where it will really lead us next- but the path behind us helps prepare us. and the miracle that in all of it- we can find peace.
Thursday, July 8, 2010
the bloody lip, the vacuum and the grace
today it was 103 degrees.
zoe was slightly sticky- mostly just crabby- low threshold land.
it's a hard place for her to be. and for me. for her i imagine it's hard because no one likes to be in a bad mood. for me it's hard because i'm waiting- for her to teeter off and fall into the bad place.
it might have been a good idea to play it safe. to stay in the air-conditioned house and watch movies. but i have this thing about not watching t.v and movies when it's beautiful and sunny, even if it's 103 degrees- it's like i feel guilty.
mike and i went to zion canyon for our 10 year wedding anniversary where we climbed up angels landing to renew our vows. the next day it was hot and dry and about 100+ degrees, and we had this amazing lodge room with a view of the canyon and a balcony and all i wanted to do was lay in that cool bedroom and watch a movie, but i was driven, compelled, to be outside. mike thought it was so funny that i couldn't allow myself the pleasure of just choosing to be inside and watch a movie for a few hours. i decided he was right. but it totally felt like i was doing something wrong- breaking some unstated, universal rule.
so anyway- i couldn't just follow her cue- beside the boys really wanted to go to the pool. so we did. now because i've opted for the "ooops mommy forgot the floaties" theme in order to encourage swimming, it means that i've got to be "tanto jump on it" all eyes on all kids all the time- and it's exhausting. add to that zoe having an off day- and my old, pre-nursing three kids- bikini top trying to fall off, and it makes for me wishing i had at least another pair of eyes and several more arms.
zoe found some kids to play with. they decided to play marco-polo. zoe had never played this before, but didn't tell them, and so attempted to follow along, which immediately resulted in her becoming the 'marco' role. then she was really lost- didn't know about closing her eyes, and appeared to not understand that she was supposed to tag someone. i kind of wanted to go and help her- but couldn't leave the boys. and i was kind of glad i couldn't leave the boys, because i didn't want to interfere.
that line again between teaching, vs rescuing, vs interfering.
the next thing i knew she is crying, because she apparently learned to close her yes and collided with one of the kids heads and is bleeding from her lips or somewhere- the dangers of braces. shes' really upset, and scared, and hurt, but mostly i think it was the tipping point for her. she had a moment of expected decompensation/ regression and i dragged them all out of the pool drooping bathing suit and all.
i thought about leaving. returning and going with the TV/movie plan- after all we'd done the sun thing. but i looked at the boy's faces and i just couldn't do it.
so we got some popsicles and had a break.
back in the pool- zoe found an old acquaintance from last summer who was there with her two friends. she did well for a while but then the brain pulled a switch and she got upset that she didn't know the friends, that she didn't know that any of them were going to be there that day, miss firing circuit. tipping point.
luckily it was time to go anyway- thank God for that already issued 5 minute warning.
she screamed -one loud scream on her way to gather our stuff.
i took a deep breath and tried to remember that this isn't about me. it's about her. helping her understand - helping her get it. anger doesn't really have a place here- or at least it won't be helpful. i kept reminding myself of my friend erin, who laughs and loves her life and rolls with it, six kids and all. i need more laughter i thought, even it the yuck parts. and i need to roll with it.
and then there it was.
leaving the building to get to the garage was a large vacuum, and it was on.
vacuums are the remaining loud inanimate object that can unwind zoe.
it was even 'the loud part'. the part that cleans rugs.
i thought fo' sho' zoe would haul off screaming with her bloody lip and all- flapping her arms and using that wiggly voice. but she didn't. she looked at it puzzled and said, " is that the loud part? because it doensn't seem so loud."
we went to the car. we talked about feelings and actions being different. we talked about how our actions affect others. we talked about being flexible and not so rigid. we talked about not screaming, but how well she handled the scary vacumm.
the grace was in my friend erin's example - and the grace i was given to remove my emotions from this situation and be: a parent. not an angry person who needs therapy because i'm so broken by having a child with special needs. (although i definitely would benefit from some therapy, again :)
the grace came as stillness.
zoe was slightly sticky- mostly just crabby- low threshold land.
it's a hard place for her to be. and for me. for her i imagine it's hard because no one likes to be in a bad mood. for me it's hard because i'm waiting- for her to teeter off and fall into the bad place.
it might have been a good idea to play it safe. to stay in the air-conditioned house and watch movies. but i have this thing about not watching t.v and movies when it's beautiful and sunny, even if it's 103 degrees- it's like i feel guilty.
mike and i went to zion canyon for our 10 year wedding anniversary where we climbed up angels landing to renew our vows. the next day it was hot and dry and about 100+ degrees, and we had this amazing lodge room with a view of the canyon and a balcony and all i wanted to do was lay in that cool bedroom and watch a movie, but i was driven, compelled, to be outside. mike thought it was so funny that i couldn't allow myself the pleasure of just choosing to be inside and watch a movie for a few hours. i decided he was right. but it totally felt like i was doing something wrong- breaking some unstated, universal rule.
so anyway- i couldn't just follow her cue- beside the boys really wanted to go to the pool. so we did. now because i've opted for the "ooops mommy forgot the floaties" theme in order to encourage swimming, it means that i've got to be "tanto jump on it" all eyes on all kids all the time- and it's exhausting. add to that zoe having an off day- and my old, pre-nursing three kids- bikini top trying to fall off, and it makes for me wishing i had at least another pair of eyes and several more arms.
zoe found some kids to play with. they decided to play marco-polo. zoe had never played this before, but didn't tell them, and so attempted to follow along, which immediately resulted in her becoming the 'marco' role. then she was really lost- didn't know about closing her eyes, and appeared to not understand that she was supposed to tag someone. i kind of wanted to go and help her- but couldn't leave the boys. and i was kind of glad i couldn't leave the boys, because i didn't want to interfere.
that line again between teaching, vs rescuing, vs interfering.
the next thing i knew she is crying, because she apparently learned to close her yes and collided with one of the kids heads and is bleeding from her lips or somewhere- the dangers of braces. shes' really upset, and scared, and hurt, but mostly i think it was the tipping point for her. she had a moment of expected decompensation/ regression and i dragged them all out of the pool drooping bathing suit and all.
i thought about leaving. returning and going with the TV/movie plan- after all we'd done the sun thing. but i looked at the boy's faces and i just couldn't do it.
so we got some popsicles and had a break.
back in the pool- zoe found an old acquaintance from last summer who was there with her two friends. she did well for a while but then the brain pulled a switch and she got upset that she didn't know the friends, that she didn't know that any of them were going to be there that day, miss firing circuit. tipping point.
luckily it was time to go anyway- thank God for that already issued 5 minute warning.
she screamed -one loud scream on her way to gather our stuff.
i took a deep breath and tried to remember that this isn't about me. it's about her. helping her understand - helping her get it. anger doesn't really have a place here- or at least it won't be helpful. i kept reminding myself of my friend erin, who laughs and loves her life and rolls with it, six kids and all. i need more laughter i thought, even it the yuck parts. and i need to roll with it.
and then there it was.
leaving the building to get to the garage was a large vacuum, and it was on.
vacuums are the remaining loud inanimate object that can unwind zoe.
it was even 'the loud part'. the part that cleans rugs.
i thought fo' sho' zoe would haul off screaming with her bloody lip and all- flapping her arms and using that wiggly voice. but she didn't. she looked at it puzzled and said, " is that the loud part? because it doensn't seem so loud."
we went to the car. we talked about feelings and actions being different. we talked about how our actions affect others. we talked about being flexible and not so rigid. we talked about not screaming, but how well she handled the scary vacumm.
the grace was in my friend erin's example - and the grace i was given to remove my emotions from this situation and be: a parent. not an angry person who needs therapy because i'm so broken by having a child with special needs. (although i definitely would benefit from some therapy, again :)
the grace came as stillness.
Wednesday, July 7, 2010
it is well with my soul
it's july. it's been cooler than june- thank God. i guess i've been busy, and that things have been good- because i usually am more prone to writing when things are rough- to get it out. and things have been fairly even.
i was watching zoe at the pool yesterday. i was remarking at the difference from last summer, and it's pretty amazing. for one thing- she can really swim now- she's all over the pool, underwater, doing handstands- diving for rings- and having underwater tea parties- she's gotten to the place where she can play in the water comfortably- where she can connect with other kids- because she's able to do the things they do- play the games they like- at least some of them.
but more than that- she is able to make friends in a more mature way- she's more confident- and she's OK with getting a "no".
last summer was very formulaic.
"Hi i'm zoe- what's your name?"
"i'm jane."
"hi jane- how old are you?"
"six"
"oh, i'm 10. do you want to be friends?"
and if the kid said no- she would get upset- or turn to the next kid (literally next to 'jane') and repeat her dialogue. it was awkward.
now- it is much more generic- organic- real. there is still some scriptedness to it- but she doesn't always reveal her age, and she doesn't always ask to "be friends" but more "do you want to play".
last summer, it was an ordeal to even get to a place where she even wanted to make friends- because she was so upset with just trying to swim. i remember not being able to handle having her and her brothers at the same time for very long. she required so much, and they were 4 and 2. it seemed so unfair. she was in such a place of turmoil and tension- but they had needs too- i was very overwhelmed.
yesterday- we all went to the pool. i had thought that some of her friends might be there and made the potential mistake of telling her this. when we got there- i was wrong and she didn't know anyone. last summer, this would have been a full on disaster. she would have fallen to bits. but yesterday, she said,
"i guess i'll go make some new friends!" and was off and swimming.
amazing.
i heard her ask a few kids if they wanted to play- before her formal introductions- (much less awkward) and she got a few "no thanks" responses- which she just rolled with.
again, amazing.
after a few minutes, she found some girls her age and had a great time.
meanwhile, i was able to spend the whole time with the boys- focusing just on them- with an occasional check in with zoe. and yesterday jude put it together and swam for the first time!
this is fantastic- it might seems like baby steps, but last summer, was truly awful at times- and the pool was almost always a mild or even full blown disaster.
that said, there are the little subtleties that she needs to learn. like not asking the spanish speaking mother of jude's friend if she is the nanny (because she speaks spanish). like not saying "mom there is a retarded african american boy in the pool- that's what i heard someone say". in those moments i'm amazed and saddened that she really doesn't understand so much about social communication. that this child- who is such a gentle soul- who would never purposely hurt or offend anyone- has - by just not knowing or not being able to pick up on the social cues. she doesn't pick up on the offended tone of the spanish speaking mom asking, "why do you think i'm the nanny?!" or on the expression on the faces of her new friends when she repeated the comment she'd heard about the boy in the pool. she needs to be taught these things- and she hates that.
on the way home, we talked about her offending comments- after much praise to all three kids for their great job swimming and making friends. and she was mad, and said i'd hurt her feelings by telling her that her comments were not appropriate. she kept saying "i KNOW!" and it think she does know, something. she knows that somethings is off, but isn't sure what- and doesn't seem to make the connection with what she said. like being another country where you don't speak fluently. i remember living in costa rica and saying "yo soy muy embarassada!" which was met with much laughter. i thought i was saying, " i'm so embarrassed", but i'd said, "i'm so pregnant". i knew something was off, but until some explained it to me- i didn't really get it.
on the way home it thought about emailing that mother and explaining that zoe has a nonverbal learning disorder- but realized she wouldn't know what that means- because no one ever does. or i could call it a mild form of autism perhaps- but then i thought, why? i can't spend my life correcting things for her- of for me- because really, it was about me being embarrassed- and i need to separate from that. i wanted to hide behind her label. to wave the "she has something like autism" flag - like a monopoly 'get out of jail free' card. but that's not fair to her. she shouldn't be defined by one part of her- she shouldn't be defined by a disability- when 95% of the time, she makes people feel really good!
we'll keep working on this, but it will probably be a life long struggle for her to learn when to hold her tongue, and what the facial expressions and tones of voice mean, and then how to adapt her behavior accordingly. and my struggle will be to teach her lovingly, with out blame or shame, and to stand beside her in those moments and be ok with a little awkwardness.
i was watching zoe at the pool yesterday. i was remarking at the difference from last summer, and it's pretty amazing. for one thing- she can really swim now- she's all over the pool, underwater, doing handstands- diving for rings- and having underwater tea parties- she's gotten to the place where she can play in the water comfortably- where she can connect with other kids- because she's able to do the things they do- play the games they like- at least some of them.
but more than that- she is able to make friends in a more mature way- she's more confident- and she's OK with getting a "no".
last summer was very formulaic.
"Hi i'm zoe- what's your name?"
"i'm jane."
"hi jane- how old are you?"
"six"
"oh, i'm 10. do you want to be friends?"
and if the kid said no- she would get upset- or turn to the next kid (literally next to 'jane') and repeat her dialogue. it was awkward.
now- it is much more generic- organic- real. there is still some scriptedness to it- but she doesn't always reveal her age, and she doesn't always ask to "be friends" but more "do you want to play".
last summer, it was an ordeal to even get to a place where she even wanted to make friends- because she was so upset with just trying to swim. i remember not being able to handle having her and her brothers at the same time for very long. she required so much, and they were 4 and 2. it seemed so unfair. she was in such a place of turmoil and tension- but they had needs too- i was very overwhelmed.
yesterday- we all went to the pool. i had thought that some of her friends might be there and made the potential mistake of telling her this. when we got there- i was wrong and she didn't know anyone. last summer, this would have been a full on disaster. she would have fallen to bits. but yesterday, she said,
"i guess i'll go make some new friends!" and was off and swimming.
amazing.
i heard her ask a few kids if they wanted to play- before her formal introductions- (much less awkward) and she got a few "no thanks" responses- which she just rolled with.
again, amazing.
after a few minutes, she found some girls her age and had a great time.
meanwhile, i was able to spend the whole time with the boys- focusing just on them- with an occasional check in with zoe. and yesterday jude put it together and swam for the first time!
this is fantastic- it might seems like baby steps, but last summer, was truly awful at times- and the pool was almost always a mild or even full blown disaster.
that said, there are the little subtleties that she needs to learn. like not asking the spanish speaking mother of jude's friend if she is the nanny (because she speaks spanish). like not saying "mom there is a retarded african american boy in the pool- that's what i heard someone say". in those moments i'm amazed and saddened that she really doesn't understand so much about social communication. that this child- who is such a gentle soul- who would never purposely hurt or offend anyone- has - by just not knowing or not being able to pick up on the social cues. she doesn't pick up on the offended tone of the spanish speaking mom asking, "why do you think i'm the nanny?!" or on the expression on the faces of her new friends when she repeated the comment she'd heard about the boy in the pool. she needs to be taught these things- and she hates that.
on the way home, we talked about her offending comments- after much praise to all three kids for their great job swimming and making friends. and she was mad, and said i'd hurt her feelings by telling her that her comments were not appropriate. she kept saying "i KNOW!" and it think she does know, something. she knows that somethings is off, but isn't sure what- and doesn't seem to make the connection with what she said. like being another country where you don't speak fluently. i remember living in costa rica and saying "yo soy muy embarassada!" which was met with much laughter. i thought i was saying, " i'm so embarrassed", but i'd said, "i'm so pregnant". i knew something was off, but until some explained it to me- i didn't really get it.
on the way home it thought about emailing that mother and explaining that zoe has a nonverbal learning disorder- but realized she wouldn't know what that means- because no one ever does. or i could call it a mild form of autism perhaps- but then i thought, why? i can't spend my life correcting things for her- of for me- because really, it was about me being embarrassed- and i need to separate from that. i wanted to hide behind her label. to wave the "she has something like autism" flag - like a monopoly 'get out of jail free' card. but that's not fair to her. she shouldn't be defined by one part of her- she shouldn't be defined by a disability- when 95% of the time, she makes people feel really good!
we'll keep working on this, but it will probably be a life long struggle for her to learn when to hold her tongue, and what the facial expressions and tones of voice mean, and then how to adapt her behavior accordingly. and my struggle will be to teach her lovingly, with out blame or shame, and to stand beside her in those moments and be ok with a little awkwardness.
