up until these last 23 months i have been able to get around this earth all on my own detachable two legs. of course the children do not remember this. they live in the now where vern totes my butt all over creation lifting me into and out of the tahoe, up and down stairs, through narrow bathroom doorways and around cramped hotel rooms. he pushes, he drives, he gets all the luggage.
today my cousin called to say she and her four year old were talking about heaven. keira asking about what would happen to her body. my cousin telling her that in heaven we would get new, perfect bodies with no owies. they talked about her uncle rick and how his body was now in the ground, and up in heaven he would have a new one. with legs. i don't know what i think dad has up there. but what my niece said in reply is the giggle of the week:
"when uncle (vern) takes jen up to heaven, i think he might need a map."
because in this theory i might be perfect once i get there, but i'll still need vern to carry me up. i do not know what part i love more - that, or the bit about needing a map so he does not get lost en route.
Showing posts with label mesomelic dysplasia. Show all posts
Showing posts with label mesomelic dysplasia. Show all posts
Friday, June 5, 2009
Friday, May 22, 2009
today begins our first summer vacation
the three and four/five year old classes merged for one pre-k-spacular spring concert/graduation 'with treats after' this morning.
some refer to our little mayberry town as a bedroom community. with the closest target a full hour away, i do not know how big they consider the house. seems our sleepy little village of 500 is more liken to an old pop-up camper out in the backyard. there's nothing wrong with camping, but mayberry-style there are few modern amenities. access to running water. toilet paper.
the kids performed at the community hall which is one big room with stage up and one big room with kitchen down. the 6 steps down sport a lift. it's old, taped together, the door is rumored to lock shut when you want off, and caleb hit a button while i was boarding. we nearly escaped catastrophe at goob's reception. so not child-proof. the full flight up has a dual entrance. from the north and south are two cases of steps meeting at a little square landing that make for a grand circle run up and down and around for the little kids. quite parent-proof. not as much joy for a wheelchair. funny how the easy 6 steps down have a lift, and yet up... testimony to mayberry's values: food above show.
vern carried me up to the see the kids sing about peanut butter and jelly and the senior pre-k class graduate with gown and paper cap. i also got my share of cake since we each - grandma, vern, myself and caleb - all got a dessert for maddy. vern. his back is our biggest blessing. i really should have thanked it by forcing grandma to eat maddy's overage.
it was a fantastic end to the year. caleb has learned what things are girl things, instructed us that he does not need to count past eleven - the number of kids in his class, renamed locomotives 'choo-choos', found his singing voice, and rhymes. it was exactly as we had hoped for his first year of social training. maybe a little less on the girl things, though - that has foiled any attempt at watching 'the little mermaid'.
i was so excited for the pre-school's open house last august. seems i even put on some make-up. the chance to meet other moms. to go in and help out at halloween and Christmas parties. to catch glimpses of caleb's life outside us - the budding social networks, snacks, projects, kid-isms. a little sad at how time was passing, excited to see around the corner of toddlerdom, and encouraged that with caleb's growing up would too be my in to the what and who and where around here. vern's from mayberry. his parents, siblings, siblings' spouses, siblings' spouses' parents, siblings' spouses' siblings... cousins. anyone not related went to school with someone who is. i'm not from here. that means everyone knows me, thinks i know them and introductions are rare.
when we moved here eight years ago i ran into the post office and locked the keys inside the running tahoe. in the rain. word of this got to my in-laws before noon that day. a year later and some mayberrians would still greet me at the postmaster's door "do you have your keys?" and chuckle along. me never knowing if it was the old school superintendent or farmer who ran the ground to the north of the farm before moving into town or... i believe that's why our postmaster bob took pity on me even though our senders never remember to correctly address mail to our po box. my great-aunts, on-line businesses and the federal government have a thing for using our street address instead - breaking postmaster bob's cardinal law of which he never fails to stamp or give hand-written reminders.
so for my great pre-k-spectations. we pull into the drive and see the pre-school, a large addition to the back of the director's house, is two stories with a split-level entrance. stairs up to go in, stairs down to his class. sets of families pouring in and out. no lift. just the sight set my eyes on fire. me and my bladder were way-pregnant and not up to vern carrying me in for the meet-and-greets. i sat outside. there would be no perks for caleb's mom. no networking. no special party days. no crafts, treats or kid-isms. life outside us for caleb would be void any interaction with his newly anointed s(tuck)ahm.
vern bussed maddy and caleb up and in. i pushed myself back to the passenger side of the tahoe, thanked my luck for vern having parked at the edge of the commotion and faced the bean field hoping my luck would hold and no one would notice me. crying. the more i tried to not, i did. i should have expected it. this is mayberry. the k-12 building is an old two-story relic herself and i have to go around the building just to get into the gymnasium. we're lucky to have a pre-school, much less expect it be up to some public code. still. i was completely caught off-guard.
that was hard.
in march the director decided to go back to nursing after ten years with the pre-k crowd. her fellow teacher will be carrying on the pre-school, "insert name 2", next fall. i've only met her once before - at goob's reception last week when i returned her wave thinking she merely relation or classmate of until caleb cried out "cindy!" and she came over, bent down to smile at owen and told me. in the house they are actively converting into the pre-school, she informed her husband the first order of business was to install a ramp.
i am over the moon. no more newsletters home thanking the parents who helped at x/y/z that did not include me. a few more days like today. when the only other mom i recognized came over with playdate offers finally putting me with caleb with vern's parents who brought him to and fro each day. confessing she felt lost with all these parents who knew each other from when they were in pre-school together, and her not being from around here. "we started brandon a couple weeks late. did they have an open house? i feel like i missed so much not meeting the other parents there! we never got to a good start." handily, her son and mine are good mates. her husband is vern's classmate and town electrician who rewired our house, also the cousin of our dear friend. so. i know a lot more about her than she might suspect. before i sound too towny, i might add she and hers were the only ones i knew. later vern spoke at length with his brother about all the characters present that went well over my head or observance...but that's where i go off on another tangent beyond my excitement for more days like today without requiring vern or his back as (pause for a breath) i was eating maddy's third portion of cake, caleb suddenly turned to me and said, "you know the best part of today! you won't ask me what i did when we get home! because you are here!"
otherwise known as a school year of: "what was for snack today?" "bunnies." "you ate bunnies, huh?" "yup." "and what were the bunnies made of?" "bunny stuff."
some refer to our little mayberry town as a bedroom community. with the closest target a full hour away, i do not know how big they consider the house. seems our sleepy little village of 500 is more liken to an old pop-up camper out in the backyard. there's nothing wrong with camping, but mayberry-style there are few modern amenities. access to running water. toilet paper.
the kids performed at the community hall which is one big room with stage up and one big room with kitchen down. the 6 steps down sport a lift. it's old, taped together, the door is rumored to lock shut when you want off, and caleb hit a button while i was boarding. we nearly escaped catastrophe at goob's reception. so not child-proof. the full flight up has a dual entrance. from the north and south are two cases of steps meeting at a little square landing that make for a grand circle run up and down and around for the little kids. quite parent-proof. not as much joy for a wheelchair. funny how the easy 6 steps down have a lift, and yet up... testimony to mayberry's values: food above show.
vern carried me up to the see the kids sing about peanut butter and jelly and the senior pre-k class graduate with gown and paper cap. i also got my share of cake since we each - grandma, vern, myself and caleb - all got a dessert for maddy. vern. his back is our biggest blessing. i really should have thanked it by forcing grandma to eat maddy's overage.
it was a fantastic end to the year. caleb has learned what things are girl things, instructed us that he does not need to count past eleven - the number of kids in his class, renamed locomotives 'choo-choos', found his singing voice, and rhymes. it was exactly as we had hoped for his first year of social training. maybe a little less on the girl things, though - that has foiled any attempt at watching 'the little mermaid'.
i was so excited for the pre-school's open house last august. seems i even put on some make-up. the chance to meet other moms. to go in and help out at halloween and Christmas parties. to catch glimpses of caleb's life outside us - the budding social networks, snacks, projects, kid-isms. a little sad at how time was passing, excited to see around the corner of toddlerdom, and encouraged that with caleb's growing up would too be my in to the what and who and where around here. vern's from mayberry. his parents, siblings, siblings' spouses, siblings' spouses' parents, siblings' spouses' siblings... cousins. anyone not related went to school with someone who is. i'm not from here. that means everyone knows me, thinks i know them and introductions are rare.
when we moved here eight years ago i ran into the post office and locked the keys inside the running tahoe. in the rain. word of this got to my in-laws before noon that day. a year later and some mayberrians would still greet me at the postmaster's door "do you have your keys?" and chuckle along. me never knowing if it was the old school superintendent or farmer who ran the ground to the north of the farm before moving into town or... i believe that's why our postmaster bob took pity on me even though our senders never remember to correctly address mail to our po box. my great-aunts, on-line businesses and the federal government have a thing for using our street address instead - breaking postmaster bob's cardinal law of which he never fails to stamp or give hand-written reminders.
so for my great pre-k-spectations. we pull into the drive and see the pre-school, a large addition to the back of the director's house, is two stories with a split-level entrance. stairs up to go in, stairs down to his class. sets of families pouring in and out. no lift. just the sight set my eyes on fire. me and my bladder were way-pregnant and not up to vern carrying me in for the meet-and-greets. i sat outside. there would be no perks for caleb's mom. no networking. no special party days. no crafts, treats or kid-isms. life outside us for caleb would be void any interaction with his newly anointed s(tuck)ahm.
vern bussed maddy and caleb up and in. i pushed myself back to the passenger side of the tahoe, thanked my luck for vern having parked at the edge of the commotion and faced the bean field hoping my luck would hold and no one would notice me. crying. the more i tried to not, i did. i should have expected it. this is mayberry. the k-12 building is an old two-story relic herself and i have to go around the building just to get into the gymnasium. we're lucky to have a pre-school, much less expect it be up to some public code. still. i was completely caught off-guard.
that was hard.
in march the director decided to go back to nursing after ten years with the pre-k crowd. her fellow teacher will be carrying on the pre-school, "insert name 2", next fall. i've only met her once before - at goob's reception last week when i returned her wave thinking she merely relation or classmate of until caleb cried out "cindy!" and she came over, bent down to smile at owen and told me. in the house they are actively converting into the pre-school, she informed her husband the first order of business was to install a ramp.
i am over the moon. no more newsletters home thanking the parents who helped at x/y/z that did not include me. a few more days like today. when the only other mom i recognized came over with playdate offers finally putting me with caleb with vern's parents who brought him to and fro each day. confessing she felt lost with all these parents who knew each other from when they were in pre-school together, and her not being from around here. "we started brandon a couple weeks late. did they have an open house? i feel like i missed so much not meeting the other parents there! we never got to a good start." handily, her son and mine are good mates. her husband is vern's classmate and town electrician who rewired our house, also the cousin of our dear friend. so. i know a lot more about her than she might suspect. before i sound too towny, i might add she and hers were the only ones i knew. later vern spoke at length with his brother about all the characters present that went well over my head or observance...but that's where i go off on another tangent beyond my excitement for more days like today without requiring vern or his back as (pause for a breath) i was eating maddy's third portion of cake, caleb suddenly turned to me and said, "you know the best part of today! you won't ask me what i did when we get home! because you are here!"
otherwise known as a school year of: "what was for snack today?" "bunnies." "you ate bunnies, huh?" "yup." "and what were the bunnies made of?" "bunny stuff."
Saturday, May 2, 2009
pretty toes
i read the first of suggestions from my old college roommate, snow flower and the secret fan, in three sittings last friday. wholly neglecting supper, bath, story, bed and all-heck-broken-loose times. i vaguely recalled later hugs and kisses good-night. it'd been a really long time since i sat down with a book. we had an affair.
it struck me how i was reading a tale about women whose futures were predicted almost entirely on the beauty of their feet. their feet after being bound and broken and reformed into 3" long 'golden lillies'. and when i say women, i really mean little girls. i realized i squint when i am horrified, and it's really hard to read while squinting.
i was born with feet. not raw golden lily material by any stretch of the imagination. as a child i used to imagine where they were. so odd the idea that a part of your being could be lopped off, bagged up and - incinerated like garbage. i finally expressed concern that my feet were just lounging around a landfill to my mother, and she clued me in. this eased my mind that they were not among mounds of disposable diapers nor would i one day bump into them floating in a big gallon jug along with the old basemented canning jars. i was 6 months old when they were removed and the process of reconstructing my knees began.
dad told me had i been born any earlier, and i'd have spent my life in an institution. earlier still, and society would have had my infant skull crushed against a rock. and in this day of ultrasounds, aborted.
i went to mexico my junior year of college. visiting the pyramids, my professor quietly told me had i been born in that ancient society, i'd have been considered a god. that still makes me smile a little, though i know i would have caved under the pressure. i mean a god. having my food brought to me while living in temple luxury is a nice idea, but i'm sure i would also have been expected to have grand thoughts. and possibly speak in public. i would surely have been found out eventually. or murdered by the Christian invaders. or on a really bad day, both.
after squinting and squirming for a good half hour, i had to laugh again. i can only imagine a matchmaker's reaction at seeing my toes. having a crushed skull might have been more out of bewilderment than brutality. and i have to let go of the idea wandering in the background that vern is a little off for finding what's left after my surgeries and amputations to be beautiful in its own right. i'd never considered a pretty foot or lower limb to be such a subjective thing. or at least extend so far beyond the preference of polish color and heel height. i so owe my husband a cookie. or at least one night off to sit and read si's 'brett favre' while i tackle the kids.
it struck me how i was reading a tale about women whose futures were predicted almost entirely on the beauty of their feet. their feet after being bound and broken and reformed into 3" long 'golden lillies'. and when i say women, i really mean little girls. i realized i squint when i am horrified, and it's really hard to read while squinting.
i was born with feet. not raw golden lily material by any stretch of the imagination. as a child i used to imagine where they were. so odd the idea that a part of your being could be lopped off, bagged up and - incinerated like garbage. i finally expressed concern that my feet were just lounging around a landfill to my mother, and she clued me in. this eased my mind that they were not among mounds of disposable diapers nor would i one day bump into them floating in a big gallon jug along with the old basemented canning jars. i was 6 months old when they were removed and the process of reconstructing my knees began.
dad told me had i been born any earlier, and i'd have spent my life in an institution. earlier still, and society would have had my infant skull crushed against a rock. and in this day of ultrasounds, aborted.
i went to mexico my junior year of college. visiting the pyramids, my professor quietly told me had i been born in that ancient society, i'd have been considered a god. that still makes me smile a little, though i know i would have caved under the pressure. i mean a god. having my food brought to me while living in temple luxury is a nice idea, but i'm sure i would also have been expected to have grand thoughts. and possibly speak in public. i would surely have been found out eventually. or murdered by the Christian invaders. or on a really bad day, both.
after squinting and squirming for a good half hour, i had to laugh again. i can only imagine a matchmaker's reaction at seeing my toes. having a crushed skull might have been more out of bewilderment than brutality. and i have to let go of the idea wandering in the background that vern is a little off for finding what's left after my surgeries and amputations to be beautiful in its own right. i'd never considered a pretty foot or lower limb to be such a subjective thing. or at least extend so far beyond the preference of polish color and heel height. i so owe my husband a cookie. or at least one night off to sit and read si's 'brett favre' while i tackle the kids.
Friday, March 27, 2009
hal's pals
i must have been 10 or 11 when mom heard about dolls inspired by the cabbage patch craze who featured special accessories. like leg braces, hearing aids, and a wheelchair. they were quite spendy for my parents. i did not beg for one so much as stare in awe of the entire idea flipping through the catalog. a doll. that i could hand-pick. to be like me. hal, the leader of the pack, was a skiing amputee. a one-legged amputee with no prosthesis.
i went with a brown-yarned beauty in pigtails with both her legs and braces. the braces automatically came with crutches. i picked a doll that did not have my disability at all, but rather my interpretation of it. i mean. i had legs. they were fake, but i had them. and the little braces were cute. plus. honestly. having your doll walk around on crutches is way fun.
my doll was also allowed to claim a wheelchair with her insurance provider. i do not remember playing with it much. i, too, had a wheelchair, that i preferred not claim. in 7th grade english i used it as a prop to demonstrate the proper way of pushing a wheelchair over a curb. it was a really lame 'how-to' presentation as i could think of nothing else what with my friend binky already showing, and rightfully so, how to clean and paint ceramics. ceramics that her mother brought us to every wednesday night and was also way fun.
it was a salty purchase, this doll and her braces and wheels, for my parents. especially for a girl just about at the end of her doll-playing years. it's one of those things i've always looked on with great respect and tenderness for their effort. and luckily, back in the 80's you could still get for what you paid for.
i do not know where the brown-yarned gal has gone to, but the cabbage patch girl who stole them was still wearing her braces and crutching along when i unpacked her after my wedding. in the box with all the doll gear was also that wheelchair with a cloth seating and stainless steel frame.
every toddler i've ever adored since has taken a spin in that doll chair. friends, nephews, nieces, cousins. my own. caleb rode it around until he couldn't get out of it anymore. often walking around hobbled with a wheelchair attached to his back-side, getting out of it became sport. and then a few months later when his hips wouldn't fit at all, but his cousin's would. oh. the cruelty of life.
elmo was almost always thrown in the chair upside down and then raced through the house. unbuckled. poor little monster would be ejected and on the ground he'd giggle senselessly as the chair and deranged orderly trampled him.
we got maddy a sweet little baby stroller-walker for her first birthday. she loves it. she loves the wheelchair more. she has a thing about making a seat wherever she is. vern's calf when he's on his knees. target's bottom display shelf. a single stiff piece of cardboard she'll stand on end. this chair on wheels is her thing. and it can double as a stroller. and it turns better than the walker-stroller when racing her brother. (though she'll carry her babies rather than risk brain damaging them to bits.)
that little toy doll wheelchair has lasted longer than two of mine. caleb imagines all kids have wheelchairs to play with.
my parents back in 1986 or 7 would have gotten such a huge charge out of that.
i went with a brown-yarned beauty in pigtails with both her legs and braces. the braces automatically came with crutches. i picked a doll that did not have my disability at all, but rather my interpretation of it. i mean. i had legs. they were fake, but i had them. and the little braces were cute. plus. honestly. having your doll walk around on crutches is way fun.
my doll was also allowed to claim a wheelchair with her insurance provider. i do not remember playing with it much. i, too, had a wheelchair, that i preferred not claim. in 7th grade english i used it as a prop to demonstrate the proper way of pushing a wheelchair over a curb. it was a really lame 'how-to' presentation as i could think of nothing else what with my friend binky already showing, and rightfully so, how to clean and paint ceramics. ceramics that her mother brought us to every wednesday night and was also way fun.
it was a salty purchase, this doll and her braces and wheels, for my parents. especially for a girl just about at the end of her doll-playing years. it's one of those things i've always looked on with great respect and tenderness for their effort. and luckily, back in the 80's you could still get for what you paid for.
i do not know where the brown-yarned gal has gone to, but the cabbage patch girl who stole them was still wearing her braces and crutching along when i unpacked her after my wedding. in the box with all the doll gear was also that wheelchair with a cloth seating and stainless steel frame.
every toddler i've ever adored since has taken a spin in that doll chair. friends, nephews, nieces, cousins. my own. caleb rode it around until he couldn't get out of it anymore. often walking around hobbled with a wheelchair attached to his back-side, getting out of it became sport. and then a few months later when his hips wouldn't fit at all, but his cousin's would. oh. the cruelty of life.
elmo was almost always thrown in the chair upside down and then raced through the house. unbuckled. poor little monster would be ejected and on the ground he'd giggle senselessly as the chair and deranged orderly trampled him.
we got maddy a sweet little baby stroller-walker for her first birthday. she loves it. she loves the wheelchair more. she has a thing about making a seat wherever she is. vern's calf when he's on his knees. target's bottom display shelf. a single stiff piece of cardboard she'll stand on end. this chair on wheels is her thing. and it can double as a stroller. and it turns better than the walker-stroller when racing her brother. (though she'll carry her babies rather than risk brain damaging them to bits.)
that little toy doll wheelchair has lasted longer than two of mine. caleb imagines all kids have wheelchairs to play with.
my parents back in 1986 or 7 would have gotten such a huge charge out of that.
Monday, March 16, 2009
nadya vessey
i want to be a mermaid when i grow up. seriously. ariel. a very modest version, though i'm sure speedo could eventually develop a suit so the top looked a little more... well. you know. she sells sea shells...
strolling
i went on a walk the summer i was 12 or 13. i noted how it felt to press my heel onto the sidewalk. how the ankle in my foot would adjust to the grade. my knees raised and lowered to the rhythmic clicking of the joints. it was a cool evening, daylight. i walked the culd de sac of my grandfather's home in omaha. i walked. i paid attention.
i was 7 or 8 swinging my legs. i noted how the weight of my lower leg was released from my knees as my feet arched back up. the pleasant weight reapplied as they came back down. how my legs would glide on their internal propulsion, raised and lowered to the joints, clicking. i swung. i was scolded for kicking my mother by accident of this set-loose propulsion. i swung anyway. i paid attention.
there is something to be said about surgery over the gradual wear-and-tear of life: i get the heads up on when to pay attention before another rung breaks from the ladder.
driving. picking up my children. hugging. standing. leaning.
stairs. at least i do not miss stepping.
i was 7 or 8 swinging my legs. i noted how the weight of my lower leg was released from my knees as my feet arched back up. the pleasant weight reapplied as they came back down. how my legs would glide on their internal propulsion, raised and lowered to the joints, clicking. i swung. i was scolded for kicking my mother by accident of this set-loose propulsion. i swung anyway. i paid attention.
there is something to be said about surgery over the gradual wear-and-tear of life: i get the heads up on when to pay attention before another rung breaks from the ladder.
driving. picking up my children. hugging. standing. leaning.
stairs. at least i do not miss stepping.
Tuesday, February 17, 2009
foot prints
i have an aversion to naked feet. in high school i had a sign in my room that barred their entrance. the sound of flip-flops flip-flopping is among my most detested. there was a nail fungus commercial in college that i was never able to watch in its entirety. i wish my husband slept with socks on.
loved ones laugh at this quirk of mine explaining it off as a side-effect of having no feet of my own. it never occurred to any of us that this strong distaste of a bare foot was a form of ageism on my part.
i am currently scouring the internet for examples of shots i hope to get of the kids saturday at the photographer's. not of their faces. group shots of their feet. bare. adorned with our wedding rings. to then enlarge and hang on the wall of our bedroom. the fact that i have yet to achieve the perfect angle and focus of their toes and heels plagues me.
as i watched caleb today practicing to pick up baby links with his ever-growing 4 yr old toes, i felt a tiny nip and wondered how long he has before mom digs out an old "no bare feet allowed" sign.
i wonder if the timing will correspond with when he will no longer fling the door open on his mother while she is using the bathroom, to bathe or otherwise, inquiring such urgencies as "dad said i could have pb and j. is that ok, mom?"
loved ones laugh at this quirk of mine explaining it off as a side-effect of having no feet of my own. it never occurred to any of us that this strong distaste of a bare foot was a form of ageism on my part.
i am currently scouring the internet for examples of shots i hope to get of the kids saturday at the photographer's. not of their faces. group shots of their feet. bare. adorned with our wedding rings. to then enlarge and hang on the wall of our bedroom. the fact that i have yet to achieve the perfect angle and focus of their toes and heels plagues me.
as i watched caleb today practicing to pick up baby links with his ever-growing 4 yr old toes, i felt a tiny nip and wondered how long he has before mom digs out an old "no bare feet allowed" sign.
i wonder if the timing will correspond with when he will no longer fling the door open on his mother while she is using the bathroom, to bathe or otherwise, inquiring such urgencies as "dad said i could have pb and j. is that ok, mom?"
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