1. Watch out for cars! They don't see very well and have big, big teeth.
2. Pain management is a good thing, even if it comes in the form of bracing cups of tea and chocolate chip cookies.
3. Play with your kid during unexpected moments. Makes both of you feel really good. I played hide and seek with E while shopping at a holiday sale at the Gap. Made E happy, made the sales manager sad.
4.When your kid says "I have something to tell you," put down the cell phone tear yourself away from the computer, and listen. At least until your next email notification.
5. When dealing with a souless organization stay calm. If that doesn't work, write many letters and make many phone calls. If that doesn't work yell. If that doesn't work do all of the previously mentioned at the same time. If that doesn't work start your own soul-full organization.
6. When you need help ask for it. Really.
7. Never underestimate the power of uninterrupted sleep. And good books and friends and that funny OT contraption that helps you pull your socks on.
8. Get outside when you can. There will be lots of days and nights when you might not be able to go outside.If you don't go outside when you can all the days and nights will run in together until all you notice is the greyness of things and then people will want to give you drugs to turn the lights on inside your head. Believe me, going outside is easier.
9. Remember: You are not alone. You are not alone. You are not alone. This is especially evident when you leave your house.
10. Life is equal parts difficult and beautiful. I don't know, I'm still thinking about that one but I do know that when Your Life Truly Sucks it will soon pass into another moment that may suck less. Try to hold on for that suck less moment. It'll happen.
11. Add your own lesson here: ______________________________________
Thursday, December 31, 2009
Sunday, December 20, 2009
The Hug Schedule
As as I was tucking Ethan into bed the other night, stuffing every free space on the mattress with stuffed animals, turning on the nightlight and generally performing the nightly before bed rituals, Ethan said to me with absolute certainty, "Mommy, I need a schedule."
"Schedule? What kind of schedule?" I had no idea what he was talking about. It surprised me that this gleefully rambunctious four year old could come up with the word, let alone the meaning of it. Let's get real: I would love to be one of these supermothers that keeps their kid on an activity schedule, sets up recurring playdates and is organized in that soccer mom kind of way. I count myself lucky that my son likes to go to bed at the same time every night and takes bathes voluntarily.
"Nooooo Mommy," he said in that exagerated, exasperated way of little kiddom "This, is my schedule. This pillow." He picked a small pillow decorated with painted lobsters. He listed numbers out loud : ..."50, 72, 12, 41....." Ethan waited for me to understand.
"You want to make a schedule of numbers?"
"Schedule for hugs!" he said and let himself fall back on his captain's bed for added drama.
"Ohhh! I said, you want to make 'Hug Schedule.'
"Yes, Mommy! Yes!" Excitement ejected him into the air.
Let me explain: When I got home from Kessler, Ethan was certain that I would, suddenly and without warning, go away again. To give him extra reassurance, I started a new routine at bed time. No matter who puts him to bed, I visit him without fail, five minutes after lights off. The 'Five Minute Check' as we call it, usually entails a hug. I sit in my wheelchair and he scrambles up on my lap. After he chooses a number from 1 to 100, the hug must last the number of seconds he dictates. Every night, he giggles as I squeeze him for all he's worth. I whisper and count in his ear. He let's his body go slack in a swoon and completely relaxes. This little ritual is just enough for him to pop happily back into bed without a worry of where I'll be when he wakes.
The next day at the kitchen table we made a grid of the days of the week and we filled in the squares with numbers. Ethan scribbled a bit on the page and pronounced it perfect. He took the stickers from a bag of apples and used them to stick the Hug schedule to his bedroom door. That night he checked the grid and declared that tonight being a Thursday was a 49 second hug. According to the first row of schedule.
"Okay," I said as he hopped up on my lap. He stared at the grid from his higher vantage point.
"What happens when the we use up all these numbers?"
"We'll make another hug schedule."
"Good," said Ethan.
I gave him a good squeeze and start counting.
"Schedule? What kind of schedule?" I had no idea what he was talking about. It surprised me that this gleefully rambunctious four year old could come up with the word, let alone the meaning of it. Let's get real: I would love to be one of these supermothers that keeps their kid on an activity schedule, sets up recurring playdates and is organized in that soccer mom kind of way. I count myself lucky that my son likes to go to bed at the same time every night and takes bathes voluntarily.
"Nooooo Mommy," he said in that exagerated, exasperated way of little kiddom "This, is my schedule. This pillow." He picked a small pillow decorated with painted lobsters. He listed numbers out loud : ..."50, 72, 12, 41....." Ethan waited for me to understand.
"You want to make a schedule of numbers?"
"Schedule for hugs!" he said and let himself fall back on his captain's bed for added drama.
"Ohhh! I said, you want to make 'Hug Schedule.'
"Yes, Mommy! Yes!" Excitement ejected him into the air.
Let me explain: When I got home from Kessler, Ethan was certain that I would, suddenly and without warning, go away again. To give him extra reassurance, I started a new routine at bed time. No matter who puts him to bed, I visit him without fail, five minutes after lights off. The 'Five Minute Check' as we call it, usually entails a hug. I sit in my wheelchair and he scrambles up on my lap. After he chooses a number from 1 to 100, the hug must last the number of seconds he dictates. Every night, he giggles as I squeeze him for all he's worth. I whisper and count in his ear. He let's his body go slack in a swoon and completely relaxes. This little ritual is just enough for him to pop happily back into bed without a worry of where I'll be when he wakes.
The next day at the kitchen table we made a grid of the days of the week and we filled in the squares with numbers. Ethan scribbled a bit on the page and pronounced it perfect. He took the stickers from a bag of apples and used them to stick the Hug schedule to his bedroom door. That night he checked the grid and declared that tonight being a Thursday was a 49 second hug. According to the first row of schedule.
"Okay," I said as he hopped up on my lap. He stared at the grid from his higher vantage point.
"What happens when the we use up all these numbers?"
"We'll make another hug schedule."
"Good," said Ethan.
I gave him a good squeeze and start counting.
Sunday, November 29, 2009
Trains, Planes and the Garden State Parkway
While I take a few hours of writing for myself, my son is on an adventure today. Like most four year old boys, Ethan has a rabid, unerring, constant passion for trains. Well, he loves vehicles of all sizes but trains are by far his favorite. Oh and did I say he loves maps too? Especially New Jersey and New York maps dotted with local highways and turnpikes and skyways.Cabbies around here become a little freaked out when they strap my son into his seat and then he gives them precise directions home. When we go to our neighbourhood Krauzer's for a quart of milk unlike most kids who'll beg for a lollipop, E will beg for a lollipop AND a map of Hudson County.
Today, Ethan is driving with his daddy to Jersey City and from there, they're taking a the path train into the city. In one fell swoop all of his major interests will come rushing up to meet him: trains, maps and handing money to grown-ups. He and daddy will have an indepth conversation about what route to take to Jersey City, and then--this part his a surprise--go down into the train for the first time. E may well be wide eyed with excitement! The noise! The people! Daddy will let him pay the fare and they'll hold hands as they step onto the car. E will rivited by the rumble, maybe a little frightened by the flashing lights and the darkness of the tunnel.
And if that isn't enough, once they re-emerge into the city it's just a quick walk to Dinosaur Hill a small but spectacular toy store on the Lower East Side where I'm sure E will avail himself of a tiny fire engine or a garbage truck, some four wheeled thing that fits in the pocket of his jeans. Then, after a well deserved snack, chocolate milk and a cookie I wager, they get to do it all again back to the car in Jersey City.
Don't misunderstand, I'm grateful to have this small window of time to write without interruption. It's a beautiful day in the neighbourhood and I plan to enjoy it. But I also look forward to that new knowing look in Ethan's eye, that look of actually having been inside a passenger car of speeding train.Later, When I ask him how his day was, he'll look at me only say, "Good." And then he'll go back to the business of constructing a garage on the living-room floor.
Today, Ethan is driving with his daddy to Jersey City and from there, they're taking a the path train into the city. In one fell swoop all of his major interests will come rushing up to meet him: trains, maps and handing money to grown-ups. He and daddy will have an indepth conversation about what route to take to Jersey City, and then--this part his a surprise--go down into the train for the first time. E may well be wide eyed with excitement! The noise! The people! Daddy will let him pay the fare and they'll hold hands as they step onto the car. E will rivited by the rumble, maybe a little frightened by the flashing lights and the darkness of the tunnel.
And if that isn't enough, once they re-emerge into the city it's just a quick walk to Dinosaur Hill a small but spectacular toy store on the Lower East Side where I'm sure E will avail himself of a tiny fire engine or a garbage truck, some four wheeled thing that fits in the pocket of his jeans. Then, after a well deserved snack, chocolate milk and a cookie I wager, they get to do it all again back to the car in Jersey City.
Don't misunderstand, I'm grateful to have this small window of time to write without interruption. It's a beautiful day in the neighbourhood and I plan to enjoy it. But I also look forward to that new knowing look in Ethan's eye, that look of actually having been inside a passenger car of speeding train.Later, When I ask him how his day was, he'll look at me only say, "Good." And then he'll go back to the business of constructing a garage on the living-room floor.
Saturday, November 14, 2009
Quadrupedalism
Since getting my cast off on October 24th, I've been dragging my ass. I've been mopey and dopey instead of celebrating the fact that I'm actually recovering from what was a difficult accident for me and my family. I've done the work: taken the meds, worked the gym, talked to the lawyers, confronted the machine that is the Insurance Industry. I've been my own best cheerleader yet I find that I'm cranky and blue, generally getting in the way of my own ordinary happiness.
I did what I would normally do when I find myself in another such foul mood, I went for a walk. This time I walked in my local library while E was happily absorbed in a pile of Clifford books. The floor of the library is carpeted which cushions the impact for my left leg and ankle. I couldn't help but notice that since I've been wearing that god awful 'old lady' support stocking, the pain in my foot has greatly diminished, and bearing weight in my castless leg wasn't half bad, really. So, taking a deep breath I shuffled along keeping my grunts to a minimum so as not to disturb my fellow readers at the library. After a while, I became aware of the rhythm of my own footsteps, moving one crutch and one foot forward slowly and simultaneously, first the left, then and the right, left and right and so on.
And then, in midstep it dawned on me. I hate moving slowly. I hate it. When I move one leg after another with way bipeds do, my navigation feels self-concious and utterly, interminably slow, as if I'll never get to where I want to go. Walking like a biped, I feel CRIPPLED in the worst sense, deflecting the sypathetic glances of well meaning bipeds. I huff and puff and inch along. Fact is, since my accident, my legs have been too weak to carry the weight of my tried and tru swing-thru walk. That is, I move two crutches forward at the same time and swing both my legs forward in a kind of hopping mini pole vaulting move. It's my walk. It's my CRIP walk. It's the way I cover twice as much ground in half the time. It's the walk that compels stranger bipeds to tell me to slow down. It's the walk that makes my mother sigh and my physical therapist cringe. It looks crooked and dangerous but it works for me When I walk like the quadruped that I am I feel autonomous and strong and in control of my body. Walking like a biped makes me feel like I trying to measure up to a standard that doesn't make sense. I am NOT one of crowd. I like my loud, happy, hear- it- for- miles gallop.
There I was on the top floor of the library and I thought what the hell, let me give it a try. It hasn't happened in a long time but maybe today will be different. I readied my crutches and moved them forward. I tranferred my weight and what do you know, my legs swung! No big deal, no huge struggle, no wobble or fall or 'oh no' moment. Before I knew it I was relaying around the circumference of the library giggling like a kid in a playground. Yay! I'm a Quadruped! I AM a Quadruped! I motored over to E, laughing, gasping, feeling younger than I have in years.
"Hi E!" I waved a crutch at him talking louder than I should've but what the hell.
"Hi Mommy," he said calmly. "I'm reading about Clifford the Big Red Dog," he said.
"That's good, Boo." E went back to his book. And I spun around to give my legs another chance to swing.
I did what I would normally do when I find myself in another such foul mood, I went for a walk. This time I walked in my local library while E was happily absorbed in a pile of Clifford books. The floor of the library is carpeted which cushions the impact for my left leg and ankle. I couldn't help but notice that since I've been wearing that god awful 'old lady' support stocking, the pain in my foot has greatly diminished, and bearing weight in my castless leg wasn't half bad, really. So, taking a deep breath I shuffled along keeping my grunts to a minimum so as not to disturb my fellow readers at the library. After a while, I became aware of the rhythm of my own footsteps, moving one crutch and one foot forward slowly and simultaneously, first the left, then and the right, left and right and so on.
And then, in midstep it dawned on me. I hate moving slowly. I hate it. When I move one leg after another with way bipeds do, my navigation feels self-concious and utterly, interminably slow, as if I'll never get to where I want to go. Walking like a biped, I feel CRIPPLED in the worst sense, deflecting the sypathetic glances of well meaning bipeds. I huff and puff and inch along. Fact is, since my accident, my legs have been too weak to carry the weight of my tried and tru swing-thru walk. That is, I move two crutches forward at the same time and swing both my legs forward in a kind of hopping mini pole vaulting move. It's my walk. It's my CRIP walk. It's the way I cover twice as much ground in half the time. It's the walk that compels stranger bipeds to tell me to slow down. It's the walk that makes my mother sigh and my physical therapist cringe. It looks crooked and dangerous but it works for me When I walk like the quadruped that I am I feel autonomous and strong and in control of my body. Walking like a biped makes me feel like I trying to measure up to a standard that doesn't make sense. I am NOT one of crowd. I like my loud, happy, hear- it- for- miles gallop.
There I was on the top floor of the library and I thought what the hell, let me give it a try. It hasn't happened in a long time but maybe today will be different. I readied my crutches and moved them forward. I tranferred my weight and what do you know, my legs swung! No big deal, no huge struggle, no wobble or fall or 'oh no' moment. Before I knew it I was relaying around the circumference of the library giggling like a kid in a playground. Yay! I'm a Quadruped! I AM a Quadruped! I motored over to E, laughing, gasping, feeling younger than I have in years.
"Hi E!" I waved a crutch at him talking louder than I should've but what the hell.
"Hi Mommy," he said calmly. "I'm reading about Clifford the Big Red Dog," he said.
"That's good, Boo." E went back to his book. And I spun around to give my legs another chance to swing.
Small Acts of Independence
I expected a feeling of elation, a big moment, a revelation, an ephiphany when I finally got the cast off. I was nervous about standing up my own two feet once again, but I did it anyway; slipped the foam slipper I'd worn for months back on my newly naked left foot and walked out of the Orthopedic surgeon's office under my my own power. There were no bugles sounding no fireworks--only an intense feeling of relief. I had finally made it to the last leg, in a manner of speaking, of my recovery. My leg didn't even look that different, (my leg muscles are atrophied anyway). Somehow the muscle tone around my knee seemed a little, I don't know, deflated but nothing shocking considering 4 months of hibernation.
For all of the anticpated excitement for my first shower in eons, I didn't go into the Y as planned but managed to climb into my own shower without to my surprise any assistance. As the water shushed down my back I thanked various higher powers for the opportunity to once again wash all of my body parts AT THE SAME TIME.
Rediscovering a favorite pair of jeans that previously could not make past a thickly casted leg is a simple pleasure not to be underestimated. Dressing by myself in something other than sweat pants goes a long way to restoring a familiar sense of self. Shed the dressings and layers of injury if only to put on a favorite pair of jeans and a clean tee-shirt.
How much of life is made up of these moments, small acts of independence, most of which are private, taken for granted and yearned for when even temporarily absent? More than I expected to be sure but I'm happy to reclaim all of them one by one even if the fanfare is only in my head.
For all of the anticpated excitement for my first shower in eons, I didn't go into the Y as planned but managed to climb into my own shower without to my surprise any assistance. As the water shushed down my back I thanked various higher powers for the opportunity to once again wash all of my body parts AT THE SAME TIME.
Rediscovering a favorite pair of jeans that previously could not make past a thickly casted leg is a simple pleasure not to be underestimated. Dressing by myself in something other than sweat pants goes a long way to restoring a familiar sense of self. Shed the dressings and layers of injury if only to put on a favorite pair of jeans and a clean tee-shirt.
How much of life is made up of these moments, small acts of independence, most of which are private, taken for granted and yearned for when even temporarily absent? More than I expected to be sure but I'm happy to reclaim all of them one by one even if the fanfare is only in my head.
What?What!
The other night, while I was cooking dinner, I got a call from my Durable Medical Equipment (DME) vendor.
"Hi," said the voice on the other end of the line, "DME Company will be coming by tomorrow morning to pick up your bed and wheelchair."
(A stunned silence on my part.)
"What?"
"We'll be picking up one hospital bed and one wheelchair in the morning."
"But I still have my cast on! I got the bed and chair because of my mobility limits with this cast on. You can't take the equipment back yet!" I don't know whether to panic or yell.
"Hmmm, we have an order from the insurance company to--"
"Who wrote the order?
"I don't know."
"You don't know?"
The voiced paused. "You better call the insurance company."
"You want ME to call the insurance company?" I didn't panic, I yelled.
"Hmmm," the voice said.
I hung up.
When I called the Insurance Company, another voice told me that my file could not be found.
"Where is it?"
The new voice said, "Let us put you on hold."
I waited.
"Hello, we're sorry to make you wait. We found your file."
Considering that I've had coverage for the past three months, I figured this was a good thing.
"According to your file the person handling your case is Mike B."
Of course I've never spoken to anyone named Mike B.
"Can you transfer me to Mike B?"
"Please hold."
I waited. I listened to Beatles muzak on the line and waited.
"This is Mike B."
I explained the situation to Mike B.
"Yeah," he said, "according to you file, the Insurance Adjustor tried to call you twice."
"She may have tried to call me, but this time I didn't get a message and I didn't talk to anyone."
I learned that in the world of Auto Insurance, the Adjustor is a Supreme Being. She decides if my coverage continues or ends. No debate.
Mike B said, "You should call the Insurance Adjustor."
"YOU WANT ME TO MAKE THE CALL?!"
"Let me call you back," he said.
Mike B called me back a few minutes later to tell me that the coverage for the hospital bed had been extended for another month. Then he said, "The DME vendor will pick up your wheelchair later on today."
WHAT? I pointed out, calmly this time, that if I still needed the hospital bed, would it not follow that I would still require the wheelchair?
"Let call you back," Mike B said.
Mike B never called me back a second time. The only reason I founded out that my coverage was extended for both the bed and the wheelchair was because I called the vendor to give an update on the situation.
"Oh sure," the customer service guy said casually, it says right here on the screen that your coverage has been extended until November 20ieth."
I can only hope that by then, my cast will be off. Just wait until I tell the vendors, reps, adjustors and whatnot that I'M PLANNING ON KEEPING THE WHEELCHAIR.
So there.
"Hi," said the voice on the other end of the line, "DME Company will be coming by tomorrow morning to pick up your bed and wheelchair."
(A stunned silence on my part.)
"What?"
"We'll be picking up one hospital bed and one wheelchair in the morning."
"But I still have my cast on! I got the bed and chair because of my mobility limits with this cast on. You can't take the equipment back yet!" I don't know whether to panic or yell.
"Hmmm, we have an order from the insurance company to--"
"Who wrote the order?
"I don't know."
"You don't know?"
The voiced paused. "You better call the insurance company."
"You want ME to call the insurance company?" I didn't panic, I yelled.
"Hmmm," the voice said.
I hung up.
When I called the Insurance Company, another voice told me that my file could not be found.
"Where is it?"
The new voice said, "Let us put you on hold."
I waited.
"Hello, we're sorry to make you wait. We found your file."
Considering that I've had coverage for the past three months, I figured this was a good thing.
"According to your file the person handling your case is Mike B."
Of course I've never spoken to anyone named Mike B.
"Can you transfer me to Mike B?"
"Please hold."
I waited. I listened to Beatles muzak on the line and waited.
"This is Mike B."
I explained the situation to Mike B.
"Yeah," he said, "according to you file, the Insurance Adjustor tried to call you twice."
"She may have tried to call me, but this time I didn't get a message and I didn't talk to anyone."
I learned that in the world of Auto Insurance, the Adjustor is a Supreme Being. She decides if my coverage continues or ends. No debate.
Mike B said, "You should call the Insurance Adjustor."
"YOU WANT ME TO MAKE THE CALL?!"
"Let me call you back," he said.
Mike B called me back a few minutes later to tell me that the coverage for the hospital bed had been extended for another month. Then he said, "The DME vendor will pick up your wheelchair later on today."
WHAT? I pointed out, calmly this time, that if I still needed the hospital bed, would it not follow that I would still require the wheelchair?
"Let call you back," Mike B said.
Mike B never called me back a second time. The only reason I founded out that my coverage was extended for both the bed and the wheelchair was because I called the vendor to give an update on the situation.
"Oh sure," the customer service guy said casually, it says right here on the screen that your coverage has been extended until November 20ieth."
I can only hope that by then, my cast will be off. Just wait until I tell the vendors, reps, adjustors and whatnot that I'M PLANNING ON KEEPING THE WHEELCHAIR.
So there.
Monday, October 12, 2009
Anticipating Water
My next appointment with the orthopedic surgeon is on October 20, and there's a good possibility that after another round of x-rays, I'll go home skinny-legged and castless. If this is true and my leg is finally set free I can take a shower. A real shower, with cascades of hot water and plenty of soap and steam and solitude. And because these days, I'm unable to concentrate on anything anyway, I find myself planning this long awaited ritual down to the smallest detail. There are so many questions: Where will I have it? How long will it be? What will I take with me?
I don't want to think about what my leg looks like under there, but I'm sure it's nothing a sharp razor and more rehab can't fix.
The shower in my house is out of the question, There are good bars in the tub/shower area but the bath always made it difficult to get in and out. Yes I could've probably wrapped my cast in plastic and duct tape but no way in hell, I'm going to risk falling and reinjuring myself. I don't know anyone else in Montclair or New Jersey for that matter that has a private accessible shower so this leaves the Y.
The Y has an area called the "Family Changing Room" which is two large bathrooms both of which have showers. One of the showers is completely accessible. I can lock the door behind me.There's a long bar against a wall, an adjustable showerhead, it's roll-in. There's even a shower chair but I notice that two of the rubber tips on the back legs are missing which makes the legs dangerously uneven. It's the kind of thing bipeds aren't likely to notice, a shower chair screaming LAWSUIT. I'll have to tell the maintenance guy. I'll bring my own shower chair. Have shower chair, will travel. If it seems like I'm rambling well I am, counting the days and choosing fresh towels. I can only hope that the Y has an endless supply of hot water. All I know is, I never want to take another sponge bath again.
I don't want to think about what my leg looks like under there, but I'm sure it's nothing a sharp razor and more rehab can't fix.
The shower in my house is out of the question, There are good bars in the tub/shower area but the bath always made it difficult to get in and out. Yes I could've probably wrapped my cast in plastic and duct tape but no way in hell, I'm going to risk falling and reinjuring myself. I don't know anyone else in Montclair or New Jersey for that matter that has a private accessible shower so this leaves the Y.
The Y has an area called the "Family Changing Room" which is two large bathrooms both of which have showers. One of the showers is completely accessible. I can lock the door behind me.There's a long bar against a wall, an adjustable showerhead, it's roll-in. There's even a shower chair but I notice that two of the rubber tips on the back legs are missing which makes the legs dangerously uneven. It's the kind of thing bipeds aren't likely to notice, a shower chair screaming LAWSUIT. I'll have to tell the maintenance guy. I'll bring my own shower chair. Have shower chair, will travel. If it seems like I'm rambling well I am, counting the days and choosing fresh towels. I can only hope that the Y has an endless supply of hot water. All I know is, I never want to take another sponge bath again.
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