it's quiet. completely quiet- i think for the first time in over two weeks. mike just took the kids to the park- so i can do work- but my mind is foggy and full of cold medicine and my heart is full of needing to feel things and my soul has been so thirsty for the sound of nothing- that i'm just sitting here enjoying it.
you notice silence only in relation to it's absence - noise- which we're surrounded by. my 'alone time' is usually in the midst of a lot of noise- laughing, crying, music, a movie in the background. so this is delightful and i will indulge in a moment of peace.
last night i kept waking up. i was thinking how easily 'africa' roles off the tongue when you say it at a party- when you tell people you're moving there- but how the reality of it won't. i've had this cold and a little fever and when ever you're sick you just want to be home- and have your mom. you don't want to be in a strange place, a strange, foreign third-world place- far away from your mom by an ocean and almost a continent. so at 3am with a cough- 'africa' didn't sound so good.
it was also because yesterday zoe and i went to a valentines party hosted by one of her friends who has autism. i only knew one person- the host, but i felt at home, because i was. i was with a community of people who get it and are still OK. and i realized that saying we're moving to africa and moving to africa are very different. we are leaving our resources, we're leaving our community, we're leaving people who get it- who get her- who sometimes even, get me.
the party was a mix of typical kids and spectrum kids and zoe who was feeling 'off'. (i know it sounds crazy- even to me- but i think it's because she ate a large gluten filled lunch the day before). anyway, there were a lot of great parents to talk with- parents who, like me, stay at a drop-off party, because we're not sure how our kids will do. parents who's kids also don't eat gluten or dairy and need to take medicine to help them with the anxiety of fitting into a world that doesn't make sense. parents whose kids notice every sound in the room and are easily distracted by them. parents who have spent years worth of hours trying to understand their children and do what's best for them. parents who spend many many thousands of dollars on testing and treatment and schooling and therapy and tutors and food. parents who know that this is not what they signed up for, but it's what they got. parents who live with the uncertainty of the future for their child, and themselves. who live with the uncertainty of each day- sometimes of each moment, and the frustrating predictability of unpredictability. parents who must decide whether to avoid social situations or encourage them, to stay home 'cause it's easier- or go and risk a melt-down, risk looks of confusion, of pity, risk being seen with the reality of your life lived with your underwear showing.
and as i watched these kids, my kid, i kept seeing their strengths and uniqueness. i could see the joy in their dancing- and hand-flapping freedom- the brilliance of number and sound memory- the ability to be in the moment. and as i watched their parents i was even more amazed, by their strength and uniqueness. there was joy and there was peace. there was an acceptance and an openness. there was an overall sense that life is just life, people just people, a party is a party, autism is just one part of things. there wasn't consumption, there wasn't shame, there wasn't embarrassment- well, except for me.
zoe was kind of off- and i knew it. she's also been going through this season of self-discovery. trying to understand her nvld in relation to autism, to typical kids, to aspergers. she's been asking a lot of questions- she's been trying to categorize people- to understand. so i reminded her to please not ask people or their parents if they or their child has autism. of course, after 15 minutes, she'd started. i could tell people were a little thrown- because zoe is kind of hard to place. she's not 'typical' but she has great eye contact, she's hyper-verbal, and she can engage in a pretty good dialogue now (not just the one sided thing she used to do). the other parents were very understanding, of course.
i began to see, again, that i have problems. that i seem to continue to twirl through the stages of 'grieving'. but these parents all seemed to have arrived somewhere that i want to be. like they'd found platform 9 3/4 to get to hogwarts express, where i just keep crashing into the brick wall. but in harry potter's world, you need to look for it and believe it exists and be a wizard- muggles can't see it.
then in church i began thinking about the difference between faith and belief. i tend to think i have a strong faith in God- but now i'm wondering if i have a strong belief, but not as much faith as i thought. "Faith makes the choice to trust based on the joining of heart and mind." because faith chooses the thinking of the heart over the thinking of the mind. and faith is what's transformative. when i look at my struggles with zoe i'm not sure i have full faith in that. and i want to. so badly.
i want to more than believe it exists, i want to have faith it exists. faith that despite all the difference and challenge- it will be OK. faith that i, too, will 'arrive'- stop twirling- and just BE STILL. faith in Gods universal provision- even in africa- even in illness- even with a nonverbal learning disorder.
it's in the letting go. i know this.
it is in the loving. i know this.
it's in the brokenness of the heart- that there is more room.
so i will wait.
"I said to my soul, be still, and wait without hope
For hope would be hope 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. " TS ELIOT
but maybe, in the dancing-
the acceptance of her flapping-
the tolerance of my own twirling- shall be the stillness.
you notice silence only in relation to it's absence - noise- which we're surrounded by. my 'alone time' is usually in the midst of a lot of noise- laughing, crying, music, a movie in the background. so this is delightful and i will indulge in a moment of peace.
last night i kept waking up. i was thinking how easily 'africa' roles off the tongue when you say it at a party- when you tell people you're moving there- but how the reality of it won't. i've had this cold and a little fever and when ever you're sick you just want to be home- and have your mom. you don't want to be in a strange place, a strange, foreign third-world place- far away from your mom by an ocean and almost a continent. so at 3am with a cough- 'africa' didn't sound so good.
it was also because yesterday zoe and i went to a valentines party hosted by one of her friends who has autism. i only knew one person- the host, but i felt at home, because i was. i was with a community of people who get it and are still OK. and i realized that saying we're moving to africa and moving to africa are very different. we are leaving our resources, we're leaving our community, we're leaving people who get it- who get her- who sometimes even, get me.
the party was a mix of typical kids and spectrum kids and zoe who was feeling 'off'. (i know it sounds crazy- even to me- but i think it's because she ate a large gluten filled lunch the day before). anyway, there were a lot of great parents to talk with- parents who, like me, stay at a drop-off party, because we're not sure how our kids will do. parents who's kids also don't eat gluten or dairy and need to take medicine to help them with the anxiety of fitting into a world that doesn't make sense. parents whose kids notice every sound in the room and are easily distracted by them. parents who have spent years worth of hours trying to understand their children and do what's best for them. parents who spend many many thousands of dollars on testing and treatment and schooling and therapy and tutors and food. parents who know that this is not what they signed up for, but it's what they got. parents who live with the uncertainty of the future for their child, and themselves. who live with the uncertainty of each day- sometimes of each moment, and the frustrating predictability of unpredictability. parents who must decide whether to avoid social situations or encourage them, to stay home 'cause it's easier- or go and risk a melt-down, risk looks of confusion, of pity, risk being seen with the reality of your life lived with your underwear showing.
and as i watched these kids, my kid, i kept seeing their strengths and uniqueness. i could see the joy in their dancing- and hand-flapping freedom- the brilliance of number and sound memory- the ability to be in the moment. and as i watched their parents i was even more amazed, by their strength and uniqueness. there was joy and there was peace. there was an acceptance and an openness. there was an overall sense that life is just life, people just people, a party is a party, autism is just one part of things. there wasn't consumption, there wasn't shame, there wasn't embarrassment- well, except for me.
zoe was kind of off- and i knew it. she's also been going through this season of self-discovery. trying to understand her nvld in relation to autism, to typical kids, to aspergers. she's been asking a lot of questions- she's been trying to categorize people- to understand. so i reminded her to please not ask people or their parents if they or their child has autism. of course, after 15 minutes, she'd started. i could tell people were a little thrown- because zoe is kind of hard to place. she's not 'typical' but she has great eye contact, she's hyper-verbal, and she can engage in a pretty good dialogue now (not just the one sided thing she used to do). the other parents were very understanding, of course.
i began to see, again, that i have problems. that i seem to continue to twirl through the stages of 'grieving'. but these parents all seemed to have arrived somewhere that i want to be. like they'd found platform 9 3/4 to get to hogwarts express, where i just keep crashing into the brick wall. but in harry potter's world, you need to look for it and believe it exists and be a wizard- muggles can't see it.
then in church i began thinking about the difference between faith and belief. i tend to think i have a strong faith in God- but now i'm wondering if i have a strong belief, but not as much faith as i thought. "Faith makes the choice to trust based on the joining of heart and mind." because faith chooses the thinking of the heart over the thinking of the mind. and faith is what's transformative. when i look at my struggles with zoe i'm not sure i have full faith in that. and i want to. so badly.
i want to more than believe it exists, i want to have faith it exists. faith that despite all the difference and challenge- it will be OK. faith that i, too, will 'arrive'- stop twirling- and just BE STILL. faith in Gods universal provision- even in africa- even in illness- even with a nonverbal learning disorder.
it's in the letting go. i know this.
it is in the loving. i know this.
it's in the brokenness of the heart- that there is more room.
so i will wait.
"I said to my soul, be still, and wait without hope
For hope would be hope 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. " TS ELIOT
but maybe, in the dancing-
the acceptance of her flapping-
the tolerance of my own twirling- shall be the stillness.
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