I feel like this has been the year Adara learned to be jaded - to not trust. The year doctors went from mildly annoying people with fun toys to nasty people who cut you open, break your bones and stick hunks of metal in you. Imprison you in fiberglass and subject you to months of x-rays and probings. And your parents sanction all of it.
Is it a developmental coincidence that this is the summer she learned to fear? Grasped the concept "If you don't do x, you won't get to do y?" Learned to future-trip, and regret the past?
I feel sometimes like in my effort to heal her hip I have subjected her to the ultimate violation, right down to her very bones and her innermost psyche. I should be excited for the developmental leaps, that she can process so much information so much more maturely, that she is getting the tools to navigate the world, but at what price?
And how do we rebuild the trust? Is this just growing up? I have always enjoyed what I have come to call the slow dance of Adara's development. Being privy to the effort in the first steps, the first words, the first grasping of concepts. But to draw out this one just seems so unfair. It is excruciating to watch her grasp the fear without the ability to see through to the other side of the terror. To mourn and grieve without the ability to contextualize, or to really verbalize. Is this just what kids do? Am I just a little slow on the uptake? Time to find a good family therapist for all of us?
Monday, September 26, 2011
Wednesday, May 25, 2011
hfjdkskdjfh
I feel like I have a lot to say all of a sudden, and it was all so there when I was washing the dishes, composing in my head as I scrubbed, the thoughts of words making the task far more painless than usual. And now as I sit in the darkening living room, dishwasher whirring, frogs peeping I am stuck, words are flat and I am not sure I have a book in me after all. But I was so sure all day, so where could it have gone?
I was talking to a mom in rural Oregon today, talking about our kids, resources, services, yadda yadda and we finally - after about 5 minutes - knew each other well enough to admit that the whole system is kind of bullshit, that our kids are just fine and not in need of fixing after all, that the services we find ourselves advocating for have little to do with who our kids are and what they need, that there is pressure to put our kids with a label through stuff we would never consider for our other kids, in the name of helping them, but really with the hope of reshaping them. She mentioned a book she had come across that addressed the subject reasonably well, but from a terribly dry and academic viewpoint. And I realized that might be the missing book, the thing that needs to find its way to being said. A book for parents, for friends, for the (gasp, dare I dare?) general public that says that my kid is whole, is who she is, will find her place in the world whether or not the world makes room, but maybe, just maybe, it would be good for said world if it decided to take a stab at making room, instead of all these repeated and fruitless stabs at fixing my kid.
It's not a new subject, it's not a terribly novel idea, but I am not sure it's been said in an accessibly enough way for folks outside the disability circle to get. I came across this tonight on a blog that I used to read but have stepped away from for awhile:
"Years ago I was told, by someone mentoring me, 'The most important thing to understand is what their limitations are.' And it's taken me a long time to accept that. I agree, wholeheartedly, now with that statement. Because, for the most part their limitations are our low expectations. I get that there is disability. I get that disability means something. But it doesn't mean what many think it means. It never means that learning is impossible. It never means that participation is a futile pursuit. It never means that time given is time wasted." (http://davehingsburger.blogspot.com/2011/05/she-said-goodbye.html)
It gets part of the way there, but not quite all the way. But now it's all muddled and there are so many threads and I have to sort through them and really I just need to go to bed.
I was talking to a mom in rural Oregon today, talking about our kids, resources, services, yadda yadda and we finally - after about 5 minutes - knew each other well enough to admit that the whole system is kind of bullshit, that our kids are just fine and not in need of fixing after all, that the services we find ourselves advocating for have little to do with who our kids are and what they need, that there is pressure to put our kids with a label through stuff we would never consider for our other kids, in the name of helping them, but really with the hope of reshaping them. She mentioned a book she had come across that addressed the subject reasonably well, but from a terribly dry and academic viewpoint. And I realized that might be the missing book, the thing that needs to find its way to being said. A book for parents, for friends, for the (gasp, dare I dare?) general public that says that my kid is whole, is who she is, will find her place in the world whether or not the world makes room, but maybe, just maybe, it would be good for said world if it decided to take a stab at making room, instead of all these repeated and fruitless stabs at fixing my kid.
It's not a new subject, it's not a terribly novel idea, but I am not sure it's been said in an accessibly enough way for folks outside the disability circle to get. I came across this tonight on a blog that I used to read but have stepped away from for awhile:
"Years ago I was told, by someone mentoring me, 'The most important thing to understand is what their limitations are.' And it's taken me a long time to accept that. I agree, wholeheartedly, now with that statement. Because, for the most part their limitations are our low expectations. I get that there is disability. I get that disability means something. But it doesn't mean what many think it means. It never means that learning is impossible. It never means that participation is a futile pursuit. It never means that time given is time wasted." (http://davehingsburger.blogspot.com/2011/05/she-said-goodbye.html)
It gets part of the way there, but not quite all the way. But now it's all muddled and there are so many threads and I have to sort through them and really I just need to go to bed.
Monday, April 4, 2011
Brooding
To rage, to brood, to dwell to sulk. So many choices, so much time.
All the complicated things that have happened in my life -- concentrated in these past 5 1/2 years, after 30 some years of uncomplicated bliss -- have come without warning.
.... just about to go upstairs and girl it up for my wedding when the phone rings, and it's my mother, just having found her mother, my maid of honor, on the ground crumpled and without her nightgown, below the door to the unrailed deck of the Maple Manor. And so we were waylaid, sidetracked, put off for a few hours of tears in the grass while we decided what to do with all these people that had tripped from near and far to honor me and David as we defined our life together on an August day. With some redirection of traffic and hors d'oeuvres, the celebration went on, a wake and a wedding together, juggled, balanced, beautiful, and I realized again just how incredible my people are.
.... just out of a "complicated" end of pregnancy, the NICU nurses have washed up and left this perfectly healthy baby behind, we are in hospital timelessness and I am still pretty drugged up, but some sun is making its way through the curtain and the pediatrician is here, so it must be morning. And she begins to mumble as she paws over our little creature. And then she raises some questions and some tests are done and an extra chromosome is found and a whole different adventure begins. Without warning, without a map, but again the beauty is found as we find our way through. Team Morgwaite is in the house, and we can handle the unexpected, yes we can. Bring it.
.... just a month in, the second baby gets his first cold. he is clogged and coughing and miserable in the night, but this is just what happens to sick babies, right? I don't really know, his sister never got sick. But it's Saturday morning and he hasn't eaten much and he's a little warm, so I finally decide to call the doctor. Under a month old? Temp of 101? To the ER with you, neglectful mom. Dad and daughter are called back from their adventure, we are whisked through the phalanx of admitting nurses and the stress runs high as samples are taken, small of the smallest back is stabbed, scary diagnoses are bandied about, and so begin three days of sharing sleep between rocking chairs and window seats, snot suctioning and iv drip. Some Valentine's Day.
But this time, there is warning. I suppose, with better questions or a slightly more forthcoming doc, we could have been preparing for this day since Adara was Corwin's age. But instead we have just been blissing along, enjoying good health and scrappy adventure. Standing alongside as she moved from yogic flying to walking, to the climbing wall. Hopping, pedaling, pumping -- all the joys of a leggy childhood. And so we are sideswiped with the news that now, suddenly, the girl needs some surgery, some fixing on the hip she has been popping all these years, even while it gets her around the block and back again. Sideswiped, but with the giftly burden of a couple months to get our heads around it. And with this time, the choice of what to do with all our creative energy. The unexpected with time for due diligence. So how do we prepare?
Brooding is given, really, but given the opportunity to brood on the possible, I'll take it. I know it's going to be hard to have a 4 year old in a body cast. I know she will be uncomfortable and scared and angry. I know her brother will be neglected at times. I know my back will hurt and life will be a bit more of a pain in the ass. I know the cast will get pissy and shitty and sweaty and grubby. I know I will get scolded by the doctors for not being careful enough, clean enough, something enough. I know there will be long sleepless nights and setbacks and David will be stressed and life won't be fun sometimes and no amount of visitors, care packages, distraction will make it all go away.
But now that the the tears have stopped splashing on the inside of my sunglasses, I also know it's all profoundly possible. And so, given my druthers, I am going to stay off the internet, and spend the next month devising ways to make it fun, ways to keep my girl busy and engaged. Ways to keep a touch of risk and thrill of adventure in her days. Swings and strollers and water tables and bean bag chairs and bean bag tosses and movie fests and craft days and pinatas and streams of visitors and care packages. Baking bread and reading books and mastering the ipad and playing video games and painting pictures and playing the piano and running with the stroller and just generally rallying the forces of joy to make it through ten long, dry weeks of cruel immobility.
But really, it's only 10 weeks. And we will be just fine. And maybe we'll even get a minivan out of the deal.
All the complicated things that have happened in my life -- concentrated in these past 5 1/2 years, after 30 some years of uncomplicated bliss -- have come without warning.
.... just about to go upstairs and girl it up for my wedding when the phone rings, and it's my mother, just having found her mother, my maid of honor, on the ground crumpled and without her nightgown, below the door to the unrailed deck of the Maple Manor. And so we were waylaid, sidetracked, put off for a few hours of tears in the grass while we decided what to do with all these people that had tripped from near and far to honor me and David as we defined our life together on an August day. With some redirection of traffic and hors d'oeuvres, the celebration went on, a wake and a wedding together, juggled, balanced, beautiful, and I realized again just how incredible my people are.
.... just out of a "complicated" end of pregnancy, the NICU nurses have washed up and left this perfectly healthy baby behind, we are in hospital timelessness and I am still pretty drugged up, but some sun is making its way through the curtain and the pediatrician is here, so it must be morning. And she begins to mumble as she paws over our little creature. And then she raises some questions and some tests are done and an extra chromosome is found and a whole different adventure begins. Without warning, without a map, but again the beauty is found as we find our way through. Team Morgwaite is in the house, and we can handle the unexpected, yes we can. Bring it.
.... just a month in, the second baby gets his first cold. he is clogged and coughing and miserable in the night, but this is just what happens to sick babies, right? I don't really know, his sister never got sick. But it's Saturday morning and he hasn't eaten much and he's a little warm, so I finally decide to call the doctor. Under a month old? Temp of 101? To the ER with you, neglectful mom. Dad and daughter are called back from their adventure, we are whisked through the phalanx of admitting nurses and the stress runs high as samples are taken, small of the smallest back is stabbed, scary diagnoses are bandied about, and so begin three days of sharing sleep between rocking chairs and window seats, snot suctioning and iv drip. Some Valentine's Day.
But this time, there is warning. I suppose, with better questions or a slightly more forthcoming doc, we could have been preparing for this day since Adara was Corwin's age. But instead we have just been blissing along, enjoying good health and scrappy adventure. Standing alongside as she moved from yogic flying to walking, to the climbing wall. Hopping, pedaling, pumping -- all the joys of a leggy childhood. And so we are sideswiped with the news that now, suddenly, the girl needs some surgery, some fixing on the hip she has been popping all these years, even while it gets her around the block and back again. Sideswiped, but with the giftly burden of a couple months to get our heads around it. And with this time, the choice of what to do with all our creative energy. The unexpected with time for due diligence. So how do we prepare?
Brooding is given, really, but given the opportunity to brood on the possible, I'll take it. I know it's going to be hard to have a 4 year old in a body cast. I know she will be uncomfortable and scared and angry. I know her brother will be neglected at times. I know my back will hurt and life will be a bit more of a pain in the ass. I know the cast will get pissy and shitty and sweaty and grubby. I know I will get scolded by the doctors for not being careful enough, clean enough, something enough. I know there will be long sleepless nights and setbacks and David will be stressed and life won't be fun sometimes and no amount of visitors, care packages, distraction will make it all go away.
But now that the the tears have stopped splashing on the inside of my sunglasses, I also know it's all profoundly possible. And so, given my druthers, I am going to stay off the internet, and spend the next month devising ways to make it fun, ways to keep my girl busy and engaged. Ways to keep a touch of risk and thrill of adventure in her days. Swings and strollers and water tables and bean bag chairs and bean bag tosses and movie fests and craft days and pinatas and streams of visitors and care packages. Baking bread and reading books and mastering the ipad and playing video games and painting pictures and playing the piano and running with the stroller and just generally rallying the forces of joy to make it through ten long, dry weeks of cruel immobility.
But really, it's only 10 weeks. And we will be just fine. And maybe we'll even get a minivan out of the deal.
Friday, March 18, 2011
Flutters
For years now the words have bubbled in my brain in expository rows, waiting to be written - scrawled or type, penciled or etched, but something has always stopped me from taking the time to get it down. Now I say I can't imagine having the focus for such things, but what about all those other years. Someday I will write. But what day will that be? Should I just wait for the days when they put a chip in my brain and all the thoughts can just be downloaded?
Sunday, June 6, 2010
Dubious Blue Beginnings
So I had to enter into blogville madness in order to read my friend's blog, keep track of her from afar, and there was this big blue button impossible to ignore instructing me to create my own blog. And so I blindly obeyed. And so here I am. Once I told my husband to take away my computer and smash it if I ever start blogging. Yet here I am. He's down there on the floor playing with the baby, and I don't think I'll tell him. Yet.
Wondering where it will go from here, if anywhere. Wondering if I will ever revisit this page, if I will even remember how I got here. I have had a few things brewing in my brain for awhile now, so perhaps this will get them out of my brain. Or perhaps not. It's not as satisfying as getting it down on paper, but I haven't been doing that lately, so perhaps, ultimately, it will find its way to being more satisfying. Time will tell.
Of course, in the rules of blogville, I suppose there's not much point in writing if I don't tell anyone about it, but I'm not quite there yet. I'll let you know if I get there.
The girl is upstairs running her grandmother ragged and the rain outside has paused for a moment. The sky is almost light. But yesterday's summer is a distant memory, more a dream than anything else. Laying in bed this morning, listening to the rain and watching the dawn ooze its way over the house, I heard the unmistakable whir of a humming bird. There it was at the feeder, and I thought to myself, if that camouflaged little gemstone can get up and go, persisting its way through these semi-biblical rains, than surely I can do the same.
And so I did, and here I am. Perhaps I'll see you tomorrow.
Wondering where it will go from here, if anywhere. Wondering if I will ever revisit this page, if I will even remember how I got here. I have had a few things brewing in my brain for awhile now, so perhaps this will get them out of my brain. Or perhaps not. It's not as satisfying as getting it down on paper, but I haven't been doing that lately, so perhaps, ultimately, it will find its way to being more satisfying. Time will tell.
Of course, in the rules of blogville, I suppose there's not much point in writing if I don't tell anyone about it, but I'm not quite there yet. I'll let you know if I get there.
The girl is upstairs running her grandmother ragged and the rain outside has paused for a moment. The sky is almost light. But yesterday's summer is a distant memory, more a dream than anything else. Laying in bed this morning, listening to the rain and watching the dawn ooze its way over the house, I heard the unmistakable whir of a humming bird. There it was at the feeder, and I thought to myself, if that camouflaged little gemstone can get up and go, persisting its way through these semi-biblical rains, than surely I can do the same.
And so I did, and here I am. Perhaps I'll see you tomorrow.
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