I almost can't do this tonight. I can't believe that in less than 48 hours, Twinkles world can be so different.
I have been crying off and on all day. Tears for the victims of Katrina, to be sure, but also tears for Twinkle. I am so happy, and excited, and nervous all at once that I am probably right on the verge of an emotional meltdown. But I have to hold it together for just two more days. :::deep breath:::
We are off to Hospital City again in the morning. We will drive the same roads and highways we always do; stay at the same hotel we have been for a couple of years now. We will go through the same routine we always do.
But this time, I am hoping that the return trip will be different. This time, I am hoping and praying that when we leave The Hospital that Twinkle will walk out without pain.
Without any pain at all.
For the first time in her life.
Literally, since the day she was born, Twinkle has never known a day without pain. When she was old enough to begin to understand her pain, and describe it for us, we realized how bad it was. How pervasive and intense. We did everything we could to make her comfortable, but always it was there.
Twinks has adapted well. She has developed the ability to concentrate so fiercely that she can actually forget about the pain for an hour or more at a time. She has learned how to move, how to play, how to run, how to do everything in such a way that it causes her the least amount of pain possible.
But on Friday morning, Twinkle will get her other brace. Both legs and feet will have the custom-made braces that will hopefully support and hold the arthritic joints so that she can walk, for the first time in her life, without pain.
It's true; we bribed the gang in O & P (Orthotics & Prosthetics) to finish her brace in record time, we promised to bring homemade chocolate chip cookies. Tonight, a double batch rests on the kitchen counter, along with homemade brownies. When she takes those first steps without pain, we will have a party right there. We will celebrate the beginning of a new chapter in Twinks life.
And so we leave for Hospital City again tomorrow, because we hope and pray that this time, Friday morning, Twinkle will walk out without pain.
We'll keep you posted...
Wednesday, August 31, 2005
Tuesday, August 30, 2005
Gratitude, in the shape of a house
Our minds are all occupied today with New Orleans, Biloxi, Gulfport. We watch the news channels non-stop; hoping/wishing/praying that we will wake up and find it was a bad dream.
It is times like these when I become really introspective. I tend to sit back, and take a complete inventory of my life. And I inevitably realize how truly fortunate I am.
As I write this, my house is clean, and whole, and dry. My carpets are not soggy with floodwater, and my floors are safe to walk on. The walls are not full of slime; the mattresses on the beds are not full of water; our furniture is dry, and comfortable to sit upon. The electricity is on, the cable is functioning, the phone lines are working, cell service is normal, and the water that runs from the taps is clear and safe to drink, safe to bathe in. The central air-conditioning unit whirs outside my window, keeping us cool.
Our cats are sleeping, each on his or her favorite windowsill. Our cars are parked in the driveway, each with a tank full of gas, ready to go wherever we need them to take us. This afternoon, the mail carrier will put the mail into the mailbox at the curb, and tonight the street lights will turn on, and illuminate the sidewalks that wend through our neighborhood. Friends and neighbors will walk their dogs, walk themselves, watch the sunset.
The Wrench will leave for work in a few hours. He doesn't have to worry if his job is still there, if the building he works in is still there. It is. The public schools opened their doors this morning as usual here; the hospitals and clinics are open and functioning fine. Down at the fire station, our first responders are washing the fire trucks and the ambulance this morning. At the grocery store, it is business as usual.
Our house stands solid, and whole, and clean in the late August sunshine.
Today my gratitude is in the shape of a house. My house. An everyday, ordinary house. Right now there are about a million people in our country (maybe more) who had these same things just days ago. Today they are huddled in hot, damp, airless shelters with no electricity. They are clinging to roofs while floodwater swirls below them. They are trapped in attics, or under debris. Some have evacuated to locations hundreds of miles away, only to watch helplessly as their cities and their homes were rendered worthless by a storm named Katrina. In the space of a day, they have no homes to go home to. There is no place to go to work; no school, no stores, no hospitals. There is only muddy brown water, or the shattered remains of their previous existence.
Today my gratitude is in the shape of my house.
Please donate to the Red Cross Disaster Relief Fund: dial 1-800-HELP-NOW
It is times like these when I become really introspective. I tend to sit back, and take a complete inventory of my life. And I inevitably realize how truly fortunate I am.
As I write this, my house is clean, and whole, and dry. My carpets are not soggy with floodwater, and my floors are safe to walk on. The walls are not full of slime; the mattresses on the beds are not full of water; our furniture is dry, and comfortable to sit upon. The electricity is on, the cable is functioning, the phone lines are working, cell service is normal, and the water that runs from the taps is clear and safe to drink, safe to bathe in. The central air-conditioning unit whirs outside my window, keeping us cool.
Our cats are sleeping, each on his or her favorite windowsill. Our cars are parked in the driveway, each with a tank full of gas, ready to go wherever we need them to take us. This afternoon, the mail carrier will put the mail into the mailbox at the curb, and tonight the street lights will turn on, and illuminate the sidewalks that wend through our neighborhood. Friends and neighbors will walk their dogs, walk themselves, watch the sunset.
The Wrench will leave for work in a few hours. He doesn't have to worry if his job is still there, if the building he works in is still there. It is. The public schools opened their doors this morning as usual here; the hospitals and clinics are open and functioning fine. Down at the fire station, our first responders are washing the fire trucks and the ambulance this morning. At the grocery store, it is business as usual.
Our house stands solid, and whole, and clean in the late August sunshine.
Today my gratitude is in the shape of a house. My house. An everyday, ordinary house. Right now there are about a million people in our country (maybe more) who had these same things just days ago. Today they are huddled in hot, damp, airless shelters with no electricity. They are clinging to roofs while floodwater swirls below them. They are trapped in attics, or under debris. Some have evacuated to locations hundreds of miles away, only to watch helplessly as their cities and their homes were rendered worthless by a storm named Katrina. In the space of a day, they have no homes to go home to. There is no place to go to work; no school, no stores, no hospitals. There is only muddy brown water, or the shattered remains of their previous existence.
Today my gratitude is in the shape of my house.
Please donate to the Red Cross Disaster Relief Fund: dial 1-800-HELP-NOW
Saturday, August 27, 2005
Hometown, upside down
We live in a quiet little city, on the fringes of "The Greater Metro Area". 20 minutes of driving, and you can be most anywhere you want to be: world-class museums, the opera, the ballet, the symphony, shopping, parks, playgrounds, sporting events and restaurants - almost any cuisine you are in the mood for.
It's a great little town to raise a family in; the schools are famous for the quality of education, and our high school's teams regularly bring home the trophies. And, until this week, we had one of the lowest crime rates for a city of it's size.
You can stand on our front porch, and see the back side of the house where it happened. A whole family, murdered just one street over.
For the last two days, there has been a solid parade of cars up and down our street. They drive slowly, trying to peer between the houses, to see... I don't know what... something.
I can't understand this. I can't imagine the thought process that goes into this. At what point in the evening do you turn to your spouse and say "Gee honey, dinner was great, and the movie doesn't start for another 45 minutes or so... Let's go see if we can look at the house where the whole family died!" ENTIRE FAMILIES fill the cars; they show the children - point out the window - and they all gawk at what little they can see.
I was standing in our front yard last night, talking to our next-door neighbor. Another neighbor from across the street joined us. M has lived here for 24 years; he was one of the first to move in, when the streets weren't even paved yet. B has lived here for 15 years; we remember when she brought her youngest home from the hospital as a newborn. We bought our house from my mom after my dad died & she remarried; a member of our family has always lived in this house for the last 23+ years. It is a stable, solid community we live in; there are more families on our street who are the original owners of their homes than not; when a house is placed for sale here, it doesn't last for long. As we talked, and watched the endless traffic flow by on our normally peaceful street, we noticed that many of the cars were going by more than once; there was a blue Chevy Suburban that made the trip up and down the street no less than six times.
We didn't know the murdered family. I'll be the first to admit that - they lived one street over, and had not lived here long. But that makes this no less tragic. The family member who came home and found them certainly will never think of it as great entertainment on a weekend evening. The extended family members who must now try to live without their loved ones will never feel that way. The veteran police officers, shaken by what they saw will never see it that way.
The Greater Metro media has dispatched satellite trucks; there is one for every major television network. We can hear the generators, and see the lights for the live remotes at night. The solemn-looking reporters stand in front of the floodlit cul-de-sac, and mouth inane phrases about the "quiet, peaceful neighborhood" and the "shocked and concerned neighbors". They troll our streets, looking for people who will talk on camera about it; hoping for any sensational little bit of information that they can turn into an "exclusive" for the next newscast.
The police have sought to reassure us; to tell those of us living here that we are safe, and that it appears that the family had to have known whoever it was that murdered them. They are working as hard and as fast as they can; they have been there around the clock since the bodies were discovered on Friday morning.
But I think what bothers me more than not knowing who killed our neighbors (and why) is this rather detached, gruesome fascination that complete strangers seem to have with the whole thing. I realize that until know our little town has never had *anything* this sensational, this shocking happen. I know all about the "gapers block" that develops on the highway when there is an accident. I guess I have just never experienced it this closely, for this long.
Our subdivision, our neighborhood, our block has been turned upside down by this. And I suppose what is most striking to me at the moment is how this has resonated across our entire little community. One terrible crime, committed against one family, has rippled out through our neighborhood in ways I would have never imagined.
Before Friday morning, we lived on a quiet, tree-lined street. Tonight we live adjacent to a crime scene.
Hometown, upside down.
It's a great little town to raise a family in; the schools are famous for the quality of education, and our high school's teams regularly bring home the trophies. And, until this week, we had one of the lowest crime rates for a city of it's size.
You can stand on our front porch, and see the back side of the house where it happened. A whole family, murdered just one street over.
For the last two days, there has been a solid parade of cars up and down our street. They drive slowly, trying to peer between the houses, to see... I don't know what... something.
I can't understand this. I can't imagine the thought process that goes into this. At what point in the evening do you turn to your spouse and say "Gee honey, dinner was great, and the movie doesn't start for another 45 minutes or so... Let's go see if we can look at the house where the whole family died!" ENTIRE FAMILIES fill the cars; they show the children - point out the window - and they all gawk at what little they can see.
I was standing in our front yard last night, talking to our next-door neighbor. Another neighbor from across the street joined us. M has lived here for 24 years; he was one of the first to move in, when the streets weren't even paved yet. B has lived here for 15 years; we remember when she brought her youngest home from the hospital as a newborn. We bought our house from my mom after my dad died & she remarried; a member of our family has always lived in this house for the last 23+ years. It is a stable, solid community we live in; there are more families on our street who are the original owners of their homes than not; when a house is placed for sale here, it doesn't last for long. As we talked, and watched the endless traffic flow by on our normally peaceful street, we noticed that many of the cars were going by more than once; there was a blue Chevy Suburban that made the trip up and down the street no less than six times.
We didn't know the murdered family. I'll be the first to admit that - they lived one street over, and had not lived here long. But that makes this no less tragic. The family member who came home and found them certainly will never think of it as great entertainment on a weekend evening. The extended family members who must now try to live without their loved ones will never feel that way. The veteran police officers, shaken by what they saw will never see it that way.
The Greater Metro media has dispatched satellite trucks; there is one for every major television network. We can hear the generators, and see the lights for the live remotes at night. The solemn-looking reporters stand in front of the floodlit cul-de-sac, and mouth inane phrases about the "quiet, peaceful neighborhood" and the "shocked and concerned neighbors". They troll our streets, looking for people who will talk on camera about it; hoping for any sensational little bit of information that they can turn into an "exclusive" for the next newscast.
The police have sought to reassure us; to tell those of us living here that we are safe, and that it appears that the family had to have known whoever it was that murdered them. They are working as hard and as fast as they can; they have been there around the clock since the bodies were discovered on Friday morning.
But I think what bothers me more than not knowing who killed our neighbors (and why) is this rather detached, gruesome fascination that complete strangers seem to have with the whole thing. I realize that until know our little town has never had *anything* this sensational, this shocking happen. I know all about the "gapers block" that develops on the highway when there is an accident. I guess I have just never experienced it this closely, for this long.
Our subdivision, our neighborhood, our block has been turned upside down by this. And I suppose what is most striking to me at the moment is how this has resonated across our entire little community. One terrible crime, committed against one family, has rippled out through our neighborhood in ways I would have never imagined.
Before Friday morning, we lived on a quiet, tree-lined street. Tonight we live adjacent to a crime scene.
Hometown, upside down.
Tuesday, August 23, 2005
Allow me to introduce myself...
I'll be your Mommy for the evening.
Would you like to know about the specials that I have for you tonight?
First, we have a lovely "Is your homework finished?" This popular selection is certain to be heard before the night is over. Quite often, we will serve the companion "All of it?" question with that.
Next, I can highly recommend "Get ready for bed, NOW". This is another of our most frequent items, and comes with a side order of "Did you take your bath yet?"
We also have the classic "Have you picked up your room yet?", which can be served with or without "Why are your shoes in the hallway" and "Who left wet towels on the bathroom floor?"
For ala carte selections, we have "Because I am The Mommy, and I said So", "Don't start!", and one of our most frequent picks: The Triple Name, which consists of the mother of your choice yelling your first name, followed by your middle name and your last name, typically with a "Come here right now!" or a "You are in SUCH trouble!" chaser.
Finally, our dessert cart this evening has a delightful selection. There are perennial favorites, like hugs and kisses, but we also have a special collection of "You are my little sweetheart", "I am so happy you are my kid!" and of course, "I love you".
A 15% gratuity will be added for pajama parties.
Enjoy your evening.
Would you like to know about the specials that I have for you tonight?
First, we have a lovely "Is your homework finished?" This popular selection is certain to be heard before the night is over. Quite often, we will serve the companion "All of it?" question with that.
Next, I can highly recommend "Get ready for bed, NOW". This is another of our most frequent items, and comes with a side order of "Did you take your bath yet?"
We also have the classic "Have you picked up your room yet?", which can be served with or without "Why are your shoes in the hallway" and "Who left wet towels on the bathroom floor?"
For ala carte selections, we have "Because I am The Mommy, and I said So", "Don't start!", and one of our most frequent picks: The Triple Name, which consists of the mother of your choice yelling your first name, followed by your middle name and your last name, typically with a "Come here right now!" or a "You are in SUCH trouble!" chaser.
Finally, our dessert cart this evening has a delightful selection. There are perennial favorites, like hugs and kisses, but we also have a special collection of "You are my little sweetheart", "I am so happy you are my kid!" and of course, "I love you".
A 15% gratuity will be added for pajama parties.
Enjoy your evening.
Monday, August 22, 2005
A Good Day
I can't wait.
I simply can't wait now. I can't wait to get back to Hospital City, and get that other brace onto Twinks.
We had a Good Day. Overall, things just went... well. In fact, one might say that we got about as close to Normal today as we ever have.
We went shopping. We walked around - a lot - and although she had to sit down once (to adjust the brace) it was No Big Deal. She is still having pain on the "unbraced" side, but for whatever reason, today it just wasn't as bad as it has been.
I don't know how tomorrow will be, but I am so grateful to have had this day.
Today was a Good Day.
I simply can't wait now. I can't wait to get back to Hospital City, and get that other brace onto Twinks.
We had a Good Day. Overall, things just went... well. In fact, one might say that we got about as close to Normal today as we ever have.
We went shopping. We walked around - a lot - and although she had to sit down once (to adjust the brace) it was No Big Deal. She is still having pain on the "unbraced" side, but for whatever reason, today it just wasn't as bad as it has been.
I don't know how tomorrow will be, but I am so grateful to have had this day.
Today was a Good Day.
Saturday, August 20, 2005
To sleep, perchance to dream...
...No, we aren't doing Shakespeare.
The last two (or is it three?) days have been tough for Twinkle. She's sleeping *a lot*. While she's sleeping, it's night terrors. When she's awake, it's pain. The Wrench and I look like a pair of old married zombie-people. Twinks looks even worse; she has terrible dark circles under her eyes, and she's preternaturally pale and quiet.
The new AFO brace that we went to Hospital City to get *is* working out quite well. The pain she is experiencing now is (ironically enough) from the left foot/leg. The one that does not yet have a brace. The (now former) "good" side. When the first brace went on, it "quieted" the pain for the "bad", right leg/foot. Now for the first time, she is aware of just how badly the left foot/leg has been hurting. Again we are counting down the days until we return to Hospital City to pick up the left side brace.
Twinks escape is sleep. When she sleeps, it doesn't hurt. When she sleeps, she is whatever and whoever she wants to be. When she sleeps, she is free of everything; the stress of being different in a society that demands perfection, the limitations of her physical abilities, and most of all, the pain.
Tonight as I watch her sleeping, I pray that wherever she is in her dreams is tranquil, and comfortable, and above all - free of the pain.
The last two (or is it three?) days have been tough for Twinkle. She's sleeping *a lot*. While she's sleeping, it's night terrors. When she's awake, it's pain. The Wrench and I look like a pair of old married zombie-people. Twinks looks even worse; she has terrible dark circles under her eyes, and she's preternaturally pale and quiet.
The new AFO brace that we went to Hospital City to get *is* working out quite well. The pain she is experiencing now is (ironically enough) from the left foot/leg. The one that does not yet have a brace. The (now former) "good" side. When the first brace went on, it "quieted" the pain for the "bad", right leg/foot. Now for the first time, she is aware of just how badly the left foot/leg has been hurting. Again we are counting down the days until we return to Hospital City to pick up the left side brace.
Twinks escape is sleep. When she sleeps, it doesn't hurt. When she sleeps, she is whatever and whoever she wants to be. When she sleeps, she is free of everything; the stress of being different in a society that demands perfection, the limitations of her physical abilities, and most of all, the pain.
Tonight as I watch her sleeping, I pray that wherever she is in her dreams is tranquil, and comfortable, and above all - free of the pain.
Friday, August 19, 2005
I'm not ready for this...
... I don't think I ever will be. The Wrench made his position clear the day Twinkle was born; he would never be ready. No man will ever be good enough for Daddy's Little Princess.
But on this day, Daddy wasn't there. Good thing too, because "seething" is the word that comes to mind when I think about his potential reaction to the little scene that unfolded.
We (Twinkle & I) were at The Hospital on Wednesday, and we were sitting in the waiting rooms/playroom. Twinks was looking adorable (as always; this kid could wear a potato sack, and it would look *charming*) and I was exchanging pleasantries with another mother nearby.
A boy - he couldn't be more than 13, maybe 14, enters my field of vision. He's in a chair, zipping across the carpet, deftly swerving between the people, heading right up through the center of the room. Suddenly, he changes course; he veers ever-so-slightly over toward where we are sitting. Twinks is an animated picture of sweetness; she is playing with a toddler. The Boy slows as he sails past us, and I hear it, audible, but just:
Twinks doesn't even seem to notice; she is glorious in her laughter, playing with this sweet little baby girl. The Boy continues on toward Clinic check-in/Patient Registration. I shake my head slightly, thinking maybe I was wrong. Maybe that Boy did *not* just check out my eleven-year old daughter.
I focus my attention on the other mother again. Now I see The Boy, who has finished at Registration, coming back around for Round Two.
Nope. He's checking her out. He glides by slowly again, this time a bit closer.
Now it is all I can do to contain myself. The Boy is openly leering at Twinks; he is clearly interested in her. She is studiously ignoring him; the age-old game is playing itself out right in front of me, but this time one of the principals is my *baby*. I don't know whether to laugh or cry.
I'm not ready for this. And I may never be. Twinks is our only child; I am in no hurry for her to grow up. Thankfully, she is still far more interested in being a kid than in trying to wade into the adult world. She still relishes every opportunity to play, and with a wisdom far beyond her years, she already senses that once her childhood is gone that something precious will be lost.
I have always known that this time would come; that some day a young man would come along, a boy who will charm her, and flirt with her, and make her feel all fluttery inside. I just never thought it would happen so soon.
The Boy is handsome, in a clean-cut, outdoorsy way. He has neatly trimmed hair, his skin is golden from playing out in the summer sun, and his eyes are blue. His arms are already muscular and powerful from piloting his chair. His smile is contagious, and full of mischief. I'm betting he is going to be a real heart-breaker by the time he gets to High School.
But for now, he retreats to the relative safety of the opposite side of the room in the face of Twinkles open rebuff. From there, he spends much of his time watching her silently, smiling hopefully whenever her gaze happens to move in his direction.
I almost feel sorry for him.
Almost.
I'm just not ready for this...
But on this day, Daddy wasn't there. Good thing too, because "seething" is the word that comes to mind when I think about his potential reaction to the little scene that unfolded.
We (Twinkle & I) were at The Hospital on Wednesday, and we were sitting in the waiting rooms/playroom. Twinks was looking adorable (as always; this kid could wear a potato sack, and it would look *charming*) and I was exchanging pleasantries with another mother nearby.
A boy - he couldn't be more than 13, maybe 14, enters my field of vision. He's in a chair, zipping across the carpet, deftly swerving between the people, heading right up through the center of the room. Suddenly, he changes course; he veers ever-so-slightly over toward where we are sitting. Twinks is an animated picture of sweetness; she is playing with a toddler. The Boy slows as he sails past us, and I hear it, audible, but just:
"Mmmmm-hmmmmmmm!"
Twinks doesn't even seem to notice; she is glorious in her laughter, playing with this sweet little baby girl. The Boy continues on toward Clinic check-in/Patient Registration. I shake my head slightly, thinking maybe I was wrong. Maybe that Boy did *not* just check out my eleven-year old daughter.
I focus my attention on the other mother again. Now I see The Boy, who has finished at Registration, coming back around for Round Two.
sotto voice: "I liiiiiiiiiiiiiiiiiiike it!"
Nope. He's checking her out. He glides by slowly again, this time a bit closer.
murmurs: "Hey... how long you been coming here?"
Now it is all I can do to contain myself. The Boy is openly leering at Twinks; he is clearly interested in her. She is studiously ignoring him; the age-old game is playing itself out right in front of me, but this time one of the principals is my *baby*. I don't know whether to laugh or cry.
I'm not ready for this. And I may never be. Twinks is our only child; I am in no hurry for her to grow up. Thankfully, she is still far more interested in being a kid than in trying to wade into the adult world. She still relishes every opportunity to play, and with a wisdom far beyond her years, she already senses that once her childhood is gone that something precious will be lost.
I have always known that this time would come; that some day a young man would come along, a boy who will charm her, and flirt with her, and make her feel all fluttery inside. I just never thought it would happen so soon.
The Boy is handsome, in a clean-cut, outdoorsy way. He has neatly trimmed hair, his skin is golden from playing out in the summer sun, and his eyes are blue. His arms are already muscular and powerful from piloting his chair. His smile is contagious, and full of mischief. I'm betting he is going to be a real heart-breaker by the time he gets to High School.
But for now, he retreats to the relative safety of the opposite side of the room in the face of Twinkles open rebuff. From there, he spends much of his time watching her silently, smiling hopefully whenever her gaze happens to move in his direction.
I almost feel sorry for him.
Almost.
I'm just not ready for this...
Wednesday, August 17, 2005
Reflections from mile marker 278
Here we are, on the way home from another trip to The Hospital.
We have stopped (again) to stretch our legs, and use the bathroom (for we are Girls, and so we like to have all of the amenities we possibly can; ergo we do NOT simply run behind a shrub to pee) and I am feeling a bit disoriented.
I'm watching my daughter do something that, until today, I have only been able to imagine. Something that most parents take for granted.
I'm watching our daughter walk - without pain.
Earlier in the day at The Hospital, we were back in O&P, and Big J. had brought the "raw" brace to finish. He placed it on Twinkle's right foot and leg, and started marking where it needed to be changed. He contoured it to hold her foot perfectly; he placed the Velcro straps in just the right places for Twinks. After Big J. had everything "just so", he helped Twinks put on her shoe, and they went for a little walk. She had to learn to "heel and toe" with the brace; it is jointed at the ankle, but the foot is held in a rigid position to keep all of those arthritic little joints from moving (and hurting).
Big J. saw a couple of little modifications that needed to be made, so he helped Twinkle back up on the table, and took the brace to the shop, where he made the subtle little changes that would make the brace more comfortable. While he was out of the room, Twink turned to me, and with tears shining in her eyes said "It doesn't hurt, Mama! For the first time ever, it doesn't hurt!"
Imagine if you had never known a day in your life without pain; if every step you took caused you to hurt. Imagine being eleven years old, and having *that* to look forward to for the rest of your life.
Then imagine that this man brings in a brace, and after working with you for less than an hour, you are able to walk without any pain for the first time in your life.
Imagine how giddy we are.
We will go back in about two and a half weeks to get the brace for her left foot and leg; in one day her right side has gone from being her "bad" side to her "good" side. Before, she didn't realize how much her left foot was hurting, because of all of the pain on the right side. It was a no-brainer to decide that she needed the left side braced also.
I can't wait for The Wrench to see...
We have stopped (again) to stretch our legs, and use the bathroom (for we are Girls, and so we like to have all of the amenities we possibly can; ergo we do NOT simply run behind a shrub to pee) and I am feeling a bit disoriented.
I'm watching my daughter do something that, until today, I have only been able to imagine. Something that most parents take for granted.
I'm watching our daughter walk - without pain.
Earlier in the day at The Hospital, we were back in O&P, and Big J. had brought the "raw" brace to finish. He placed it on Twinkle's right foot and leg, and started marking where it needed to be changed. He contoured it to hold her foot perfectly; he placed the Velcro straps in just the right places for Twinks. After Big J. had everything "just so", he helped Twinks put on her shoe, and they went for a little walk. She had to learn to "heel and toe" with the brace; it is jointed at the ankle, but the foot is held in a rigid position to keep all of those arthritic little joints from moving (and hurting).
Big J. saw a couple of little modifications that needed to be made, so he helped Twinkle back up on the table, and took the brace to the shop, where he made the subtle little changes that would make the brace more comfortable. While he was out of the room, Twink turned to me, and with tears shining in her eyes said "It doesn't hurt, Mama! For the first time ever, it doesn't hurt!"
Imagine if you had never known a day in your life without pain; if every step you took caused you to hurt. Imagine being eleven years old, and having *that* to look forward to for the rest of your life.
Then imagine that this man brings in a brace, and after working with you for less than an hour, you are able to walk without any pain for the first time in your life.
Imagine how giddy we are.
We will go back in about two and a half weeks to get the brace for her left foot and leg; in one day her right side has gone from being her "bad" side to her "good" side. Before, she didn't realize how much her left foot was hurting, because of all of the pain on the right side. It was a no-brainer to decide that she needed the left side braced also.
I can't wait for The Wrench to see...
Tuesday, August 16, 2005
Dateline: Hospital City (again)
Well, here we are again. A two day/one night trip this time, but otherwise, essentially the same.
We arrived just as rush hour was beginning; we were both glad to be off the road, and in the air-conditioned comfort of our hotel. After we relaxed a bit, and unpacked, we walked across the parking lot and ate dinner at a local steakhouse.
Now we are getting ready to do physical therapy - you can probably hear the WHINING about that from here...
Tomorrow morning, it's back to The Hospital, to see everyone again, and pick up the new braces.
Twinkle told me today that one of the reasons that she looks forward to going to The Hospital is because she feels *normal* there. Because everyone there is like she is - different. So, she isn't different there; she's normal.
So tomorrow, for a while at least, we will be normal.
We arrived just as rush hour was beginning; we were both glad to be off the road, and in the air-conditioned comfort of our hotel. After we relaxed a bit, and unpacked, we walked across the parking lot and ate dinner at a local steakhouse.
Now we are getting ready to do physical therapy - you can probably hear the WHINING about that from here...
Tomorrow morning, it's back to The Hospital, to see everyone again, and pick up the new braces.
Twinkle told me today that one of the reasons that she looks forward to going to The Hospital is because she feels *normal* there. Because everyone there is like she is - different. So, she isn't different there; she's normal.
So tomorrow, for a while at least, we will be normal.
Monday, August 15, 2005
3, 2, 1... GO!
We are off to Hospital City again in the morning.
Much of our pre-trip routine is unnecessary this time; we have not had enough time to collect enough toys to make our rounds, and we still have an ample supply of pins, so we don't need to visit The Pin Man.
Tried to wash the van, but first it rained, then it got dark, so that didn't work out so well. Did fill it with gas - after taking out a line of credit against the house...
The laundry is done, the ice chest is ready to fill with bottled water, Diet Coke (for me) and juice boxes. The suitcase is never really unpacked, and after I finish this entry, the laptop will be packed into its case and ready to go.
There isn't much left to do, except look forward.
And we do look forward to this trip, every time. I suppose it is hard to understand how it is that we can eagerly anticipate going to The Hospital, after all, it is the one place that (as parents) we pray our children will always avoid.
But when your child is born different, when you have never parented a child any other way, then I think it must become "normal". We have never lived in a world without a support team of doctors and nurses and technicians; we have never bought a pair of shoes for Twink without making sure that they will work with her braces, or her orthotic inserts, or her lift. We have never gone anywhere without a wheelchair for Twinkle; when she was younger, we were able to "hide" it in the guise of a stroller, but nowadays it is what it is.
We plan our days, our nights, our lives differently that most families. And that is never more apparent than right before one of these trips.
There is no rushing about, no frenzy of activity. This is routine for us; part of the everyday fabric of our lives. The suitcase remains "packed" with a set of toiletries all the time; we have "travel-sized" everything; we only have to decide what clothing we want to wear. All is calm, and Twinkle is excited; she looks forward to visiting The Hospital for a lot of reasons, not the least of which this time is that we are hoping that the new braces will help eliminate some of her pain.
I guess that is why I *can* look forward to these trips, also. It's because of the hope. Every time we go to this incredible place, we come home with hope that things will somehow get better. Even when the news is bad, our doctor keeps hope alive, by reminding us how far Twinkle has come since she was born, and that new procedures, new medicines, new forms of treatment for her conditions are being invented all the time.
Hope is all I need for this trip. (That, and a wheelbarrow full of cash, to pay for the gas...)
Much of our pre-trip routine is unnecessary this time; we have not had enough time to collect enough toys to make our rounds, and we still have an ample supply of pins, so we don't need to visit The Pin Man.
Tried to wash the van, but first it rained, then it got dark, so that didn't work out so well. Did fill it with gas - after taking out a line of credit against the house...
The laundry is done, the ice chest is ready to fill with bottled water, Diet Coke (for me) and juice boxes. The suitcase is never really unpacked, and after I finish this entry, the laptop will be packed into its case and ready to go.
There isn't much left to do, except look forward.
And we do look forward to this trip, every time. I suppose it is hard to understand how it is that we can eagerly anticipate going to The Hospital, after all, it is the one place that (as parents) we pray our children will always avoid.
But when your child is born different, when you have never parented a child any other way, then I think it must become "normal". We have never lived in a world without a support team of doctors and nurses and technicians; we have never bought a pair of shoes for Twink without making sure that they will work with her braces, or her orthotic inserts, or her lift. We have never gone anywhere without a wheelchair for Twinkle; when she was younger, we were able to "hide" it in the guise of a stroller, but nowadays it is what it is.
We plan our days, our nights, our lives differently that most families. And that is never more apparent than right before one of these trips.
There is no rushing about, no frenzy of activity. This is routine for us; part of the everyday fabric of our lives. The suitcase remains "packed" with a set of toiletries all the time; we have "travel-sized" everything; we only have to decide what clothing we want to wear. All is calm, and Twinkle is excited; she looks forward to visiting The Hospital for a lot of reasons, not the least of which this time is that we are hoping that the new braces will help eliminate some of her pain.
I guess that is why I *can* look forward to these trips, also. It's because of the hope. Every time we go to this incredible place, we come home with hope that things will somehow get better. Even when the news is bad, our doctor keeps hope alive, by reminding us how far Twinkle has come since she was born, and that new procedures, new medicines, new forms of treatment for her conditions are being invented all the time.
Hope is all I need for this trip. (That, and a wheelbarrow full of cash, to pay for the gas...)
Prayers are answered...
My grandmother used to say that sometimes the answer to our prayers is yes, sometimes no, and sometimes we don't get the answer right away.
Not in this case. In this case, everyones prayers for Christopher were answered with a resounding "YES!"
Christopher came through the surgery like a champ. The neurosurgeon was able to remove the mass (which turned out to be a blood clot the size of a baseball) and repair the damage to the artery in Christopher's brain that had allowed the clot to form. The surgery took somewhere around six hours; they have been running MRI's every two hours since. The surgeon said that all of the bleeding is stopped. We just got the phone call a few minutes ago; he is going to be fine, and is finally out of Recovery and back in his room in the ICU.
He will be coming home to a relieved and grateful family in three to four days.
A very dear and special friend of ours has arrived in my place, and will stay with my brother and his boys until no longer needed, so I no longer have to worry about my brother, or my nephews; they are in good, loving, capable hands.
I am so relieved; so happy to know that Christopher is going to be OK, relieved to know that my brother and his family have the help they will need for the next week or so.
I am so thankful for your support, and your prayers.
I am so completely grateful to God.
I am *so* going to get a good night's sleep...
Not in this case. In this case, everyones prayers for Christopher were answered with a resounding "YES!"
Christopher came through the surgery like a champ. The neurosurgeon was able to remove the mass (which turned out to be a blood clot the size of a baseball) and repair the damage to the artery in Christopher's brain that had allowed the clot to form. The surgery took somewhere around six hours; they have been running MRI's every two hours since. The surgeon said that all of the bleeding is stopped. We just got the phone call a few minutes ago; he is going to be fine, and is finally out of Recovery and back in his room in the ICU.
He will be coming home to a relieved and grateful family in three to four days.
A very dear and special friend of ours has arrived in my place, and will stay with my brother and his boys until no longer needed, so I no longer have to worry about my brother, or my nephews; they are in good, loving, capable hands.
I am so relieved; so happy to know that Christopher is going to be OK, relieved to know that my brother and his family have the help they will need for the next week or so.
I am so thankful for your support, and your prayers.
I am so completely grateful to God.
I am *so* going to get a good night's sleep...
Sunday, August 14, 2005
Please Pray for Christopher
My nephew, Christopher, lies in the ICU of a southern California hospital tonight. My brother, who is his father, refuses to leave his side; Christopher has a mass that has grown into his brain. It was diagnosed earlier today in the ER, after Christopher, complaining of a headache, collapsed.
Emergency surgery has been scheduled for tomorrow morning, 7:30 am Pacific time, Sunday August 14th.
Even if all of the Gods of Airline Travel were to cooperate tonight, it is too late for me to get there. There are no more flights tonight. There is no way for me to arrive before the surgeon's knife makes the first slice into Christophers' skull. Even if I were there, there is little that I can do but stand around and feel helpless. However, I need to be here too; Twinks needs me here, and we have to leave for another trip to Hospital City again in less than 72 hours, for Twinks to be fitted with her new braces.
But I still wish I were there. I wish there was a way that I could reach out to my brother tonight, and hold him, and tell him that Christopher will be OK. I wish that I could hold Christopher's little brother, Brandon, and tell him that his big brother will be fine, that in a week or two everything will be right back to normal. I want to gather Christopher in my arms, and tell him to hold on, and be brave and strong.
What makes this all so much more difficult is that just over a year ago, on July 4th 2004, my brother's wife died. She was standing at the kitchen sink, and they were getting ready for a family barbecue. People had started to arrive; the boys were playing in the kitchen while she worked. My brother had run to the grocery store on the corner to grab a few things they had forgotten. When he returned from the store, the ambulance was blocking the driveway, and the paramedics were inside performing CPR while the boys stood in shock, watching.
Her aorta had ruptured; she never had a chance.
We marked July 4th this year with a celebration of her life, and a celebration of their completing a journey through this terrible, lonely first year without Wife and Mother. All of us had hoped that somehow this next year would be better, easier.
Twinks is devastated; she could hear my side of the conversation, and knew that her cousin was in trouble. She wants to go too - she wants to be there when Christopher comes back out of surgery, to tell him that she knows what it is like to hurt, but that it will be OK.
Christopher is twelve years old. He has bright blue eyes, a shock of thick, blonde hair, and the sweetest smile in the world. He loves to play baseball, Yugi-Oh, and to go bike riding.
Please pray for Christopher.
Emergency surgery has been scheduled for tomorrow morning, 7:30 am Pacific time, Sunday August 14th.
Even if all of the Gods of Airline Travel were to cooperate tonight, it is too late for me to get there. There are no more flights tonight. There is no way for me to arrive before the surgeon's knife makes the first slice into Christophers' skull. Even if I were there, there is little that I can do but stand around and feel helpless. However, I need to be here too; Twinks needs me here, and we have to leave for another trip to Hospital City again in less than 72 hours, for Twinks to be fitted with her new braces.
But I still wish I were there. I wish there was a way that I could reach out to my brother tonight, and hold him, and tell him that Christopher will be OK. I wish that I could hold Christopher's little brother, Brandon, and tell him that his big brother will be fine, that in a week or two everything will be right back to normal. I want to gather Christopher in my arms, and tell him to hold on, and be brave and strong.
What makes this all so much more difficult is that just over a year ago, on July 4th 2004, my brother's wife died. She was standing at the kitchen sink, and they were getting ready for a family barbecue. People had started to arrive; the boys were playing in the kitchen while she worked. My brother had run to the grocery store on the corner to grab a few things they had forgotten. When he returned from the store, the ambulance was blocking the driveway, and the paramedics were inside performing CPR while the boys stood in shock, watching.
Her aorta had ruptured; she never had a chance.
We marked July 4th this year with a celebration of her life, and a celebration of their completing a journey through this terrible, lonely first year without Wife and Mother. All of us had hoped that somehow this next year would be better, easier.
Twinks is devastated; she could hear my side of the conversation, and knew that her cousin was in trouble. She wants to go too - she wants to be there when Christopher comes back out of surgery, to tell him that she knows what it is like to hurt, but that it will be OK.
Christopher is twelve years old. He has bright blue eyes, a shock of thick, blonde hair, and the sweetest smile in the world. He loves to play baseball, Yugi-Oh, and to go bike riding.
Please pray for Christopher.
Saturday, August 13, 2005
Twinkle Blogs!
Twinkle, who will now and forevermore be known as "The Twinkie", has created her own Blog.
:::sigh:::
She is growing up all too fast.
You can read my girl's prose here: The Twinkie Speaks
:::sigh:::
She is growing up all too fast.
You can read my girl's prose here: The Twinkie Speaks
Thursday, August 11, 2005
Shock & Awe...
Is our theme for today.
This morning was Melinda's funeral. After the memorial service was over, I had that same "disconnected" feeling that I so often have after a great personal sadness has occurred. The feeling that rushes over you when you realize that the whole rest of the world is still out there, doing the same stuff you were doing on Monday morning before that bastard Death crept into your little circle of beloveds, and snatched one away. This was that moment when the two realities crash into one another; the insular, private world of grief that we have occupied for the last three days, and Everything Else.
Shock that the world had not stopped turning during Melinda's memorial.
Awe at how quick and easy it was to merge back into the traffic of the daily world, almost as if nothing had happened. Almost.
Fast forward three hours. We were home, lunch was over, The Wrench had gone to work (second shift means I'm running a 24 hour household again) and an ordinary, everyday thing happened in an extraordinary way.
The mail came.
It arrived on our doorstep with a rather mysterious "thump", and by the time I got to the front door... whoever had delivered it had disappeared - like magic! On the step was a rather unremarkable brown cardboard box, with my name & address on it - and nothing more. I carried this package into the house, and Twinkle was instantly curious; she assumed it was something that we had purchased on eBay, or perhaps a catalog order.
I already knew what it was. I thought I knew what was going to happen next.
Twink and I were sitting on the kitchen floor to open the box. I slit open the tape, and laughing together, we began tossing crumpled white packing paper into the air. It drifted back around us like gigantic snowflakes while we both gazed at... another box.
This box was much, much smaller. This box also held yet *another* box; the third box was a little styrofoam shipping container. The little styrofoam container held the treasure that Twinkle did not expect, did not know had been sent just for her. I tell Twinkle to close her eyes, and hold out her hands. "What is it, Mommy?" she asks, over and over while I carefully place The Treasure in her hands. I tell her to open her eyes.
She recognizes it instantly. Her reaction is far more than what I thought it would be. She is so excited and happy that she can't catch her breath. She's actually going cyanotic, but is aware of nothing but The Treasure that she is holding. I'm scrambling around in the giant snowflakes, feeling for the cordless phone, because I think she is going to literally die from happiness. My hand finally makes contact with the phone, and I have already begun to punch in 9... 1... and she draws a shaky breath. She has no idea that she just scared three years right out of me; she is still completely enthralled by The Treasure that lies in her hands. All she can say is "Oh!" over and over and over again; for one rare moment in her life, my little chatterbox is speechless. Not for long; next are happy tears, and a fervent vow to cherish The Treasure FOREVER, even when she is old like me, she won't let anyone else touch it because it is so SPECIAL.
The Treasure is a gift from a friend; someone who is wise enough to know that sometimes giving away your treasure can make you happier than keeping it all to yourself. I only wish he could have seen in person the joy, and the magic he brought to our precious girl Twinkle today. I hope with all my heart that someone, someday, somehow can give his children the joy and pure happiness that he gave our daughter today.
Shock at Twinkle's reaction to The Treasure. I thought I knew how she would react, but she surprised me at the depth of emotion that she displayed.
Awe at the generosity of a friend who gave so easily and freely from his personal collection, with no thought other than making a child happy.
What a day.
This morning was Melinda's funeral. After the memorial service was over, I had that same "disconnected" feeling that I so often have after a great personal sadness has occurred. The feeling that rushes over you when you realize that the whole rest of the world is still out there, doing the same stuff you were doing on Monday morning before that bastard Death crept into your little circle of beloveds, and snatched one away. This was that moment when the two realities crash into one another; the insular, private world of grief that we have occupied for the last three days, and Everything Else.
Shock that the world had not stopped turning during Melinda's memorial.
Awe at how quick and easy it was to merge back into the traffic of the daily world, almost as if nothing had happened. Almost.
Fast forward three hours. We were home, lunch was over, The Wrench had gone to work (second shift means I'm running a 24 hour household again) and an ordinary, everyday thing happened in an extraordinary way.
The mail came.
It arrived on our doorstep with a rather mysterious "thump", and by the time I got to the front door... whoever had delivered it had disappeared - like magic! On the step was a rather unremarkable brown cardboard box, with my name & address on it - and nothing more. I carried this package into the house, and Twinkle was instantly curious; she assumed it was something that we had purchased on eBay, or perhaps a catalog order.
I already knew what it was. I thought I knew what was going to happen next.
Twink and I were sitting on the kitchen floor to open the box. I slit open the tape, and laughing together, we began tossing crumpled white packing paper into the air. It drifted back around us like gigantic snowflakes while we both gazed at... another box.
This box was much, much smaller. This box also held yet *another* box; the third box was a little styrofoam shipping container. The little styrofoam container held the treasure that Twinkle did not expect, did not know had been sent just for her. I tell Twinkle to close her eyes, and hold out her hands. "What is it, Mommy?" she asks, over and over while I carefully place The Treasure in her hands. I tell her to open her eyes.
She recognizes it instantly. Her reaction is far more than what I thought it would be. She is so excited and happy that she can't catch her breath. She's actually going cyanotic, but is aware of nothing but The Treasure that she is holding. I'm scrambling around in the giant snowflakes, feeling for the cordless phone, because I think she is going to literally die from happiness. My hand finally makes contact with the phone, and I have already begun to punch in 9... 1... and she draws a shaky breath. She has no idea that she just scared three years right out of me; she is still completely enthralled by The Treasure that lies in her hands. All she can say is "Oh!" over and over and over again; for one rare moment in her life, my little chatterbox is speechless. Not for long; next are happy tears, and a fervent vow to cherish The Treasure FOREVER, even when she is old like me, she won't let anyone else touch it because it is so SPECIAL.
The Treasure is a gift from a friend; someone who is wise enough to know that sometimes giving away your treasure can make you happier than keeping it all to yourself. I only wish he could have seen in person the joy, and the magic he brought to our precious girl Twinkle today. I hope with all my heart that someone, someday, somehow can give his children the joy and pure happiness that he gave our daughter today.
Shock at Twinkle's reaction to The Treasure. I thought I knew how she would react, but she surprised me at the depth of emotion that she displayed.
Awe at the generosity of a friend who gave so easily and freely from his personal collection, with no thought other than making a child happy.
What a day.
Tuesday, August 09, 2005
Exit Smiling
Dear Melinda:
Had I known that we would never see one another again, I would have taken greater care last month to spend a few more moments, lingering in the shade, chatting and laughing at the picnic.
Had I known that you would never again come flying across the room toward us, laughing, and doing that terrible impersonation of Jerry Lewis - "Hey LAAAADEEEEE!" I would have made you do it a hundred, no a million more times, so that I can never forget.
Had I known that you were going to drop dead of a massive heart attack yesterday morning, I would have found the time for all of the things we were *supposed* to do together; I would have never taken it for granted that you were always going to be there.
You weren't supposed to die. You are my age, and I am no where near ready to die. I remember what you said, earlier this year with awful clarity:
I don't know what I am going to miss the most: your laugh, your smile, or your incredible way of looking at the world as a giant playground just waiting for us. I know I will miss the passion that you brought to everyday routine. I know that your dear husband, Bob, will never stop missing you. I know that we will never stop missing seeing the light in his eyes that shone because of you.
Bob said that he wanted us to all wear the crazy tie-dyed shirts, and outrageous outfits that you loved so much for your memorial service on Thursday. He said that this must be a celebration of you, that we must all remember that your bright and shining spirit will live on as long as there is laughter and sunshine in the world. He is so incredibly, terribly brave. I almost cannot bear to look at him, at his face; although he is doing all the things he is supposed to, he is not really *here*. He is moving, talking, eating, all by rote - he is an empty shell of the man we know and love as "Bob", because you are not by his side.
I know that you, your spirit, the essence of who you were, is not gone, but the Melinda that gave hugs and kisses as easily as she breathed; the Melinda who loved our own Twinkle so much, the Melinda who made our dear Bob so very, very happy... is gone.
In time, Bob will "recover". The lost, empty look will, given enough years, begin to fade from his eyes. One day, he will laugh out loud again, probably at something that would have made you laugh too. He may even fall in love again, although I cannot imagine that there is any woman on earth who could ever begin to fill Bob with life the way you did. We will all go on, but we are all changed without you.
You were so special, to so many people. I hope and pray that wherever you are, you know that. I hope that you are as happy there, as you made us while you were here. I pray that someday, when I arrive where you are, you will be one of those waiting for me.
And if I'm correct, you'll be the one in the silly party hat, at the head of the conga line.
Had I known that we would never see one another again, I would have taken greater care last month to spend a few more moments, lingering in the shade, chatting and laughing at the picnic.
Had I known that you would never again come flying across the room toward us, laughing, and doing that terrible impersonation of Jerry Lewis - "Hey LAAAADEEEEE!" I would have made you do it a hundred, no a million more times, so that I can never forget.
Had I known that you were going to drop dead of a massive heart attack yesterday morning, I would have found the time for all of the things we were *supposed* to do together; I would have never taken it for granted that you were always going to be there.
You weren't supposed to die. You are my age, and I am no where near ready to die. I remember what you said, earlier this year with awful clarity:
If I have to go, I want to go with a smile on my face!
I don't know what I am going to miss the most: your laugh, your smile, or your incredible way of looking at the world as a giant playground just waiting for us. I know I will miss the passion that you brought to everyday routine. I know that your dear husband, Bob, will never stop missing you. I know that we will never stop missing seeing the light in his eyes that shone because of you.
Bob said that he wanted us to all wear the crazy tie-dyed shirts, and outrageous outfits that you loved so much for your memorial service on Thursday. He said that this must be a celebration of you, that we must all remember that your bright and shining spirit will live on as long as there is laughter and sunshine in the world. He is so incredibly, terribly brave. I almost cannot bear to look at him, at his face; although he is doing all the things he is supposed to, he is not really *here*. He is moving, talking, eating, all by rote - he is an empty shell of the man we know and love as "Bob", because you are not by his side.
I know that you, your spirit, the essence of who you were, is not gone, but the Melinda that gave hugs and kisses as easily as she breathed; the Melinda who loved our own Twinkle so much, the Melinda who made our dear Bob so very, very happy... is gone.
In time, Bob will "recover". The lost, empty look will, given enough years, begin to fade from his eyes. One day, he will laugh out loud again, probably at something that would have made you laugh too. He may even fall in love again, although I cannot imagine that there is any woman on earth who could ever begin to fill Bob with life the way you did. We will all go on, but we are all changed without you.
You were so special, to so many people. I hope and pray that wherever you are, you know that. I hope that you are as happy there, as you made us while you were here. I pray that someday, when I arrive where you are, you will be one of those waiting for me.
And if I'm correct, you'll be the one in the silly party hat, at the head of the conga line.
Sunday, August 07, 2005
Navigating to a better place
I owe you, Gentle Reader, an apology. I have been re-reading some of my recent posts. Boy, what a WHINER I have been lately.
I've gotten lost in my own fears. I've allowed myself to wallow around in self-pity long enough, thank you. I have to get back on track. One of the biggest "rules" that we have at our house is this one:
Mom's lack of direction meant that on more than one occasion, we would wind up "visiting" a part of our city that we didn't intend to. We would stumble upon some interesting little neighborhood, or find some dusty little shop that looked intriguing. We ate a variety of foods from all kinds of little Mom & Pop restaurants. We would always find our way back home again, where I would regale Daddy with tales of our "adventures" at dinner that evening.
My mother is still, to this day, one of the most beautiful, intelligent, loving, creative women I have ever had the pleasure of knowing. She has a wonderful, positive spirit. (She's also one of my best friends in all the world) But she can't find her way out of a wet paper bag. She simply has no sense of (physical) direction.
So that is how I was raised. By this wonderful, optimistic woman, laughing behind the wheel of the car as we rolled down another unfamiliar street. She taught me that anything can be an "adventure". That there are "happy accidents" if you can just see them. That you have to be optimistic until you just can't be any more.
But lately I had forgotten The Rule. I have been so busy being a WHINER that I have failed to see the adventure that is squarely before us.
The adventure is the struggle to get Twinkle up out of that wheelchair, and back on her feet. We did it once before, when she was a toddler. When she was born, the doctors told us she would never be able to walk. We proved them wrong once. We can prove them wrong again. It may take more time than we want it to, it may not happen the way we want it to, but we can do this. Together, as a family, there is nothing that the three of us can't do. There is no place we can't go.
As long as we don't let my mother drive us there.
I've gotten lost in my own fears. I've allowed myself to wallow around in self-pity long enough, thank you. I have to get back on track. One of the biggest "rules" that we have at our house is this one:
We are always optimistic until we can't be anymore.My mother, bless her heart, has no sense of direction whatsoever. She simply cannot reliably tell you which way is north, east, south, or west. Regular maps are meaningless to her because she can't figure out which way to go from where she is. When she is driving, she has to memorize a series of landmarks to get to and from places like the grocery store; as a child I became keenly aware of this, and would try watch carefully to make sure that my mom didn't miss the turn into our neighborhood, or that she didn't go sailing right past the street that our church was on. If, however, I had my nose buried in a book (as I so often did) Mom would just keep on driving, or worse yet, she would turn the wrong way at a landmark, and neither one of us would have any idea of where we were.
Mom's lack of direction meant that on more than one occasion, we would wind up "visiting" a part of our city that we didn't intend to. We would stumble upon some interesting little neighborhood, or find some dusty little shop that looked intriguing. We ate a variety of foods from all kinds of little Mom & Pop restaurants. We would always find our way back home again, where I would regale Daddy with tales of our "adventures" at dinner that evening.
My mother is still, to this day, one of the most beautiful, intelligent, loving, creative women I have ever had the pleasure of knowing. She has a wonderful, positive spirit. (She's also one of my best friends in all the world) But she can't find her way out of a wet paper bag. She simply has no sense of (physical) direction.
So that is how I was raised. By this wonderful, optimistic woman, laughing behind the wheel of the car as we rolled down another unfamiliar street. She taught me that anything can be an "adventure". That there are "happy accidents" if you can just see them. That you have to be optimistic until you just can't be any more.
But lately I had forgotten The Rule. I have been so busy being a WHINER that I have failed to see the adventure that is squarely before us.
The adventure is the struggle to get Twinkle up out of that wheelchair, and back on her feet. We did it once before, when she was a toddler. When she was born, the doctors told us she would never be able to walk. We proved them wrong once. We can prove them wrong again. It may take more time than we want it to, it may not happen the way we want it to, but we can do this. Together, as a family, there is nothing that the three of us can't do. There is no place we can't go.
As long as we don't let my mother drive us there.
Saturday, August 06, 2005
Like everyone else
On Friday, I thought that we should try to get out, and go shopping. Usually, any time that we go shopping, it perks our little Twinkster right up. She loves to go out to the stores, and typically she pushes the pain aside, and tries to enjoy herself.
We should have stayed at home.
Her pain was (literally) off the chart on Friday. At The Hospital, they teach the kids the basics of a one to ten scale for rating their pain using little faces that range from zero (smiley face, no pain at all) to a really sad face with tears (ten, it hurts so bad I'm crying). She has been running eights, nines, and tens for the last three days. As a result, Twinkle hasn't been sleeping well either; She was tired, and therefore a bit *crankier* than usual. One might even say that she was "testy". OK, let's just be honest here; one should say that she was teetering right on the brink of 'Tween Bitch, because that's where she was.
That's fine; everyone is allowed to have a bad day every once and a while, and God knows that this kid has smiled through more than her share. So, I tried to ignore it. I really did.
I want to be clear on this. I tried. Really, really hard.
Then, it finally happened. She pushed me too far. I don't really know how, or why; maybe it was the tone of her voice, maybe it was the fact that I had already told her four times that I was not going to spend that kind of money without consulting Daddy first*, maybe it was because I had just had it, up to here.
I snapped. Right there, in the store, I told her (as my grandma used to say) How the Cow Ate the Cabbage. In no uncertain terms.
It was no different than any other parent scolding any other child. I didn't raise my voice, nor did I raise my hand to her.
Of course you have to remember that Twinkle was, at the time, sitting in her wheelchair. I was standing in front of her, and telling her (using my best Mommy Voice®, patent pending) that it was NOT going to happen, not tonight, probably not this week, and certainly not until Daddy and I could discuss it*. Period. End of Discussion.
She's not happy, but she knows we are done with the topic. I turn, only to find a handful of people staring at me reproachfully. I can see it in their eyes, on their faces: How dare you scold the pretty little girl in the wheelchair? What kind of monster are you?
Oh, we have heard it before. "How can you be so mean to her?" or some variant thereof. The implication is that we are being bad parents, because we aren't spoiling our kid rotten. From total strangers, no less. She will be begging us, trying to weasel her way into or out of something that The Wrench and I have already closed the books on, and some well-meaning do-gooder will come along and start laying on the guilt. It's a wonder that Twinkle isn't Veruca Salt on wheels.
What these tender-hearted souls never consider is that when we discipline Twinkle, we are treating her just like she is a "normal" child. It's one of the few times in her life when she really is like every other kid.
And I am like every other Mom.
And we are as "normal" as everyone else.
We should have stayed at home.
Her pain was (literally) off the chart on Friday. At The Hospital, they teach the kids the basics of a one to ten scale for rating their pain using little faces that range from zero (smiley face, no pain at all) to a really sad face with tears (ten, it hurts so bad I'm crying). She has been running eights, nines, and tens for the last three days. As a result, Twinkle hasn't been sleeping well either; She was tired, and therefore a bit *crankier* than usual. One might even say that she was "testy". OK, let's just be honest here; one should say that she was teetering right on the brink of 'Tween Bitch, because that's where she was.
That's fine; everyone is allowed to have a bad day every once and a while, and God knows that this kid has smiled through more than her share. So, I tried to ignore it. I really did.
I want to be clear on this. I tried. Really, really hard.
Then, it finally happened. She pushed me too far. I don't really know how, or why; maybe it was the tone of her voice, maybe it was the fact that I had already told her four times that I was not going to spend that kind of money without consulting Daddy first*, maybe it was because I had just had it, up to here.
I snapped. Right there, in the store, I told her (as my grandma used to say) How the Cow Ate the Cabbage. In no uncertain terms.
It was no different than any other parent scolding any other child. I didn't raise my voice, nor did I raise my hand to her.
Of course you have to remember that Twinkle was, at the time, sitting in her wheelchair. I was standing in front of her, and telling her (using my best Mommy Voice®, patent pending) that it was NOT going to happen, not tonight, probably not this week, and certainly not until Daddy and I could discuss it*. Period. End of Discussion.
She's not happy, but she knows we are done with the topic. I turn, only to find a handful of people staring at me reproachfully. I can see it in their eyes, on their faces: How dare you scold the pretty little girl in the wheelchair? What kind of monster are you?
I am not a monster. I am a mother, with a child who just happens to be in a wheelchair at the moment.
Oh, we have heard it before. "How can you be so mean to her?" or some variant thereof. The implication is that we are being bad parents, because we aren't spoiling our kid rotten. From total strangers, no less. She will be begging us, trying to weasel her way into or out of something that The Wrench and I have already closed the books on, and some well-meaning do-gooder will come along and start laying on the guilt. It's a wonder that Twinkle isn't Veruca Salt on wheels.
What these tender-hearted souls never consider is that when we discipline Twinkle, we are treating her just like she is a "normal" child. It's one of the few times in her life when she really is like every other kid.
And I am like every other Mom.
And we are as "normal" as everyone else.
*No, we are not living in the "Dark Ages". One of the time-tested rules of our house has always been that we (The Wrench and I) never spend more than $100 on anything without agreeing on it first, with the obvious exceptions of birthdays and Christmas. Say what you will, but this silly little rule has saved us countless arguments over the last 18 years of marriage.
Wednesday, August 03, 2005
Puppy Kisses & Chocolate Chip Cookies...
...are good for little girls.
This afternoon, Twinkle and I spent some time with Mr. & Mrs. Z. It was there that Mrs. Z practiced her own form of "therapy" for Twinks; puppy kisses and chocolate chip cookies.
Mr. & Mrs. Z are hands-down my favorite clients. They are a gentle, loving, intelligent couple who surely must be the definition for "aging gracefully". Mrs. Z has a razor-sharp wit, and a marked propensity for jokes that are just naughty enough to be... naughty. Mr. Z will tell you he is "fully retired", and one of his greatest joys is to sit on their wide front porch in the afternoon, with his beloved dogs at his feet, snoozing quietly in the sweet, cool shade. Their love for one another is still obvious, still sweet and tender. I hope with all of my heart that The Wrench and I are like them 30 or so years from now.
Mrs. Z called me this morning, frantic, because she thought her computer was going to "blow up!". Actually, the hard drive was dying in a rather noisy fashion; and since we were already in The City, I made a fast detour on the way back home to pick up a new drive. Our charming little suburb isn't exactly flush with the likes of CompUSA and Best Buy.
We arrived in the heat of the afternoon, and I headed straight for the computer; Mrs. Z commandeered Twinkle, and I figured that they were off to the kitchen for an afternoon snack. Mr. & Mrs. Z spoil Twinks terribly; their own grandchildren are (literally) thousands of miles away. Twinkle loves them right back; she says that they are her "extra" Grandparents, and she makes them birthday cards, and crafty little Christmas presents.
I managed to salvage all the data from the old, nearly dead hard drive and get the new drive installed fairly quickly. I started the restore CD that came with the computer, and stood up to stretch. I could hear the giggling all the way from the other side of the house, so I went to find out what the source of the hilarity is.
Puppy kisses and chocolate chip cookies.
I haven't seen Twinkle laugh like this in a month or more. Her beautiful green eyes were sparkling, and she was being covered in puppy kisses. The Z's newest puppy is (of course) adorable; to add to his charm, he periodically throws himself on his back with all four paws in the air so that his fat little belly can be rubbed. His little face is so sincere; big brown eyes, funny little fold-over ears, and a white stripe that starts at his nose, and goes all the way to the tip of his tail. Of course I didn't have my camera with me; who knew that I would have to be content with engraving these images on my heart?
The puppy is all wiggly energy; the little girl is all laughter and sunshine. The cookies are all warm and yummy.
The computer is all fixed.
I am all happy.
This afternoon, Twinkle and I spent some time with Mr. & Mrs. Z. It was there that Mrs. Z practiced her own form of "therapy" for Twinks; puppy kisses and chocolate chip cookies.
Mr. & Mrs. Z are hands-down my favorite clients. They are a gentle, loving, intelligent couple who surely must be the definition for "aging gracefully". Mrs. Z has a razor-sharp wit, and a marked propensity for jokes that are just naughty enough to be... naughty. Mr. Z will tell you he is "fully retired", and one of his greatest joys is to sit on their wide front porch in the afternoon, with his beloved dogs at his feet, snoozing quietly in the sweet, cool shade. Their love for one another is still obvious, still sweet and tender. I hope with all of my heart that The Wrench and I are like them 30 or so years from now.
Mrs. Z called me this morning, frantic, because she thought her computer was going to "blow up!". Actually, the hard drive was dying in a rather noisy fashion; and since we were already in The City, I made a fast detour on the way back home to pick up a new drive. Our charming little suburb isn't exactly flush with the likes of CompUSA and Best Buy.
We arrived in the heat of the afternoon, and I headed straight for the computer; Mrs. Z commandeered Twinkle, and I figured that they were off to the kitchen for an afternoon snack. Mr. & Mrs. Z spoil Twinks terribly; their own grandchildren are (literally) thousands of miles away. Twinkle loves them right back; she says that they are her "extra" Grandparents, and she makes them birthday cards, and crafty little Christmas presents.
I managed to salvage all the data from the old, nearly dead hard drive and get the new drive installed fairly quickly. I started the restore CD that came with the computer, and stood up to stretch. I could hear the giggling all the way from the other side of the house, so I went to find out what the source of the hilarity is.
Puppy kisses and chocolate chip cookies.
I haven't seen Twinkle laugh like this in a month or more. Her beautiful green eyes were sparkling, and she was being covered in puppy kisses. The Z's newest puppy is (of course) adorable; to add to his charm, he periodically throws himself on his back with all four paws in the air so that his fat little belly can be rubbed. His little face is so sincere; big brown eyes, funny little fold-over ears, and a white stripe that starts at his nose, and goes all the way to the tip of his tail. Of course I didn't have my camera with me; who knew that I would have to be content with engraving these images on my heart?
The puppy is all wiggly energy; the little girl is all laughter and sunshine. The cookies are all warm and yummy.
The computer is all fixed.
I am all happy.
Monday, August 01, 2005
No, wait. I was wrong.
It's not MOMMY'S HOUSE OF PAIN.
It's Daddy's House of Bribery!
Yes. I can hear you laughing out there. Ha ha. Very funny. You just wait, all of you who are so very certain that you will never, ever buy your child's cooperation. Your day is coming. And when it arrives, I won't laugh at you. Point and chuckle a little bit maybe, but laugh? No.
It's frightening how well it works.
Motivating a pre-teen (or 'Tween as they prefer to be called) is relatively easy. Find the one thing in all the world that it thinks it wants...
...then utilizing the well-know "carrot and stick" approach, lure the unsuspecting 'Tween into doing your bidding.
I am quite certain that somewhere a Psychologist feels terribly queasy, but doesn't know why.
There are consequences to this approach. The most notable one being that Daddy is going to have to pony up for all these goodies. And, because The Evil Mommy has washed her hands of the whole thing, Daddy will have to enforce the rules that he set up. Namely that Twinkle has to complete all of her PT every day, without griping at Mommy once. She can cry if it hurts (and it still does) she can complain the temperature of the room (she has), or the lack of suitable music on Radio Disney for her taste (don't even get me started). But she has to do the work.
Welcome to Daddy's House of Bribery. Where everything has a price, including Mommy's sanity!
It's Daddy's House of Bribery!
Yes. I can hear you laughing out there. Ha ha. Very funny. You just wait, all of you who are so very certain that you will never, ever buy your child's cooperation. Your day is coming. And when it arrives, I won't laugh at you. Point and chuckle a little bit maybe, but laugh? No.
It's frightening how well it works.
Motivating a pre-teen (or 'Tween as they prefer to be called) is relatively easy. Find the one thing in all the world that it thinks it wants...
...then utilizing the well-know "carrot and stick" approach, lure the unsuspecting 'Tween into doing your bidding.
I am quite certain that somewhere a Psychologist feels terribly queasy, but doesn't know why.
There are consequences to this approach. The most notable one being that Daddy is going to have to pony up for all these goodies. And, because The Evil Mommy has washed her hands of the whole thing, Daddy will have to enforce the rules that he set up. Namely that Twinkle has to complete all of her PT every day, without griping at Mommy once. She can cry if it hurts (and it still does) she can complain the temperature of the room (she has), or the lack of suitable music on Radio Disney for her taste (don't even get me started). But she has to do the work.
Welcome to Daddy's House of Bribery. Where everything has a price, including Mommy's sanity!
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