That's right. You're mine, twice a day, and I am going to whip you into shape.
I am SO MEAN. I AM THE WORST MOTHER EVER IN THE HISTORY OF THE WHOLE WORLD. CLEARLY I DO NOT LOVE MY ONLY OFFSPRING. And, I make people eat green vegetables on the weekend.
You have been warned.
Oh, the physical therapy just sucks. Period. End of discussion. Twinkle does NOT want to do it anymore. It hurts, it hurts, IT HURTS, MOM!
I have never seen this much drama confined in one small human being, ever.
When Twinks was a little younger, we would tease her about her "dramatic tendencies". We would tell her to stop being a DramaLlama, that if she didn't quit putting on such a big show, we'd have to put out chairs, and start charging people to watch. Her dad, The Wrench, has always been the best at bringing her out of it; he teases her, plays with her, gets her laughing, and the next thing you know, all the drama is over.
Well, not anymore.
She's really hurting - I know that. But I also know that if she wants to have any chance at all to relegate that damn wheelchair to the storage shed in the back yard, she's going to have to work at this. Because the arthritis in her feet won't get any better. And the braces that we will go back to Hospital City to get in a couple of weeks will create more atrophy than is already there... So the physical therapy is now a permanent feature. It has to be. Because I'm not going to let her spend the rest of her life sitting in a wheelchair if it can be avoided.
Even if it does mean I'm the Worst Mommy In The World.
Poor Twinkle. Life in Mommy's House of Pain is not going to be easy. But it will get better.
It has to.
Sunday, July 31, 2005
Saturday, July 30, 2005
Pain, Pain, Go Away...
...and bother someone else another day.
Twinkle is hurting so badly. I am helpless in the face of her suffering.
I feel like the worst mother in the world, unable to do anything to alleviate the pain.
Ordinarily, she is the bravest child I have ever seen. She endures the pain so well that there are times when even I forget that she is constantly hurting.
But not now. Not today, or for the past three days. Every step is fresh agony. The simple act of standing from a chair nearly knocks her over.
And we can't really do anything to help, except hold her, and love her, and pray that it will get better somehow.
To be unable to help your child, to watch as they suffer, is so gut-wrenching, so emotionally exhausting. It siphons the life from you; it leaves you feeling hopeless and desperate.
I really must try to get some sleep.
Twinkle is hurting so badly. I am helpless in the face of her suffering.
I feel like the worst mother in the world, unable to do anything to alleviate the pain.
Ordinarily, she is the bravest child I have ever seen. She endures the pain so well that there are times when even I forget that she is constantly hurting.
But not now. Not today, or for the past three days. Every step is fresh agony. The simple act of standing from a chair nearly knocks her over.
And we can't really do anything to help, except hold her, and love her, and pray that it will get better somehow.
To be unable to help your child, to watch as they suffer, is so gut-wrenching, so emotionally exhausting. It siphons the life from you; it leaves you feeling hopeless and desperate.
I really must try to get some sleep.
Thursday, July 28, 2005
The longest day (the longest version)
Where were we?
Ah, yes. When last we saw our brave little heroine, it was Wednesday morning, and she was waiting at the Clinic for her day to begin.
And so it did. With the first page of the day. At the Hospital, you get to hear your name called on the intercom. A lot.
First, for Weighs & Measures: "Twinkle to the scales, please". Weighs & Measures is what Twink has always called the scales. Why? Because, you get weighed, and then you get measured. Every time. It seems a rather ordinary thing to do, in this extraordinary place. Have you grown? Are you taller? Until she was five, they even measured the size of her head every year. Today, the nurse has a pen that lights up when she writes, and a little Minnie Mouse figure standing on top. Twinkle pulls the matching Mickey pen from her bag. She puts on a little play for the nurse and I.
X-ray is next. "Twinkle to X-ray, please". The X-ray nurses are X-cited to see Twinkle. Two of the three X-nurses have been X-raying Twinks since she was a baby, and they tease her gently as they take a series of pictures designed to show The Doctor X-actly what is going on inside with Twinkles bones. We wait for the X-nurse to tell us that all of the X-ray pictures are X-tremely X-ellent before we X-it the X-ray waiting room. We hand-carry the X-rays back around to the Clinic, which lets the Clinic staff know that we are X-ceptionally ready to see the doctor.
Lunch. Food is great; Twinks eats like I haven't fed her for days. Lucky for me the prices are reasonable (the Hospital cafeteria is non-profit) and food is filling.
During lunch, The Doctor stops by our table. "I knew you were in the building!" he says to Twink. "How?" she asks. "Because I've seen a whole new crop of your smiley faces, so I knew you had to be here, even before I looked at my schedule for the day!" They hug, and he teases her that she will soon be taller than he is. He looks tired, and for the first time in eleven years I notice the gray at his temples, the deep lines etched in his face. This is the man who made Twinkle walk; he performed the surgery that gave her the use of her legs and feet when she was only a year old. He asks if he can send in his Nurse Practitioner today and explains they are short one doctor today, so everyone has extra patients. I tell him that we'll miss seeing him later, but to tell NP we are ready whenever she is. He hugs me also, then hurries off to grab his lunch. Later in the afternoon, I see his cafeteria tray in the Clinic, on his desk. The food has barely been touched.
After lunch, back to the waiting rooms on the Clinic side.
"Twinkle to exam room 5, please". Off we go to exam room 5. As with the entire building, the rooms are cheerful, bright, and extraordinarily clean. Each exam room has a different set of objects glued to the door that corresponds to the room number. Exam room 5 is marked by five Frisbees glued to the door. We wait for perhaps 10 minutes before Nurse Practitioner breezes in. More hugs for everyone, and Twinkle gives her a handful of her smiley face pins so that she can give anyone who needs one a smile. NP pockets the pins, and tells Twink that she can already think of several people who might need one before the day is over.
Just as quickly as she came in, she changes gears, and we can tell that it is time to get down to business. NP talks to Twinkle, not to me; as the patients get older, they are given the responsibility of their own care, and Twinkle is now considered to be old enough to be a "partner" in her own care. This means she has to listen carefully to what staff members tell her, and she must be ready to answer any questions they may have for her. NP sits next to Twinkle, and goes through the standard litany; current list of meds, allergies, list of known medical "issues". Twinkle shows off the new Twinkerbell shoes we brought; NP admires them, and teases her that if she isn't watching, she might grab them for herself. Now the smile fades from NP's face.
While acknowledging the need for PT/rehab I also ask if the braces can't be extended somehow, to enclose her foot more fully and hold it in place better. NP says that the concern is that the foot and ankle may atrophy further than they already have. I point out that the shorter SMO is not doing the job we need it to do; if I understand the primary issue, we need to hold her foot steady and still; that should (in theory) help reduce the amount of joint movement, which should (in theory) reduce the amount of pain. NP agrees, and the option of a hinged AFO, which will go up to just under Twinkles knees, is agreed upon after talking to Twink about the seriousness of doing her rehab daily.
Finally, NP wants Twink to try and use the wheelchair as little as is possible. She is worried that Twink will sit down and never get back up. We talk about when Twinkle should use it, and Twinkle agrees to try and use it as little as possible for the next three weeks. NP gets ready to leave, and schedules Twink for both PT/rehab and O&P to be fitted for the new braces. She hugs both of us again, and moves to the door. "Let's go show off your new shoes".
Twink and NP head off to the hallway where the doctors and nurses offices are, and an impromptu fashion show is held. The nurses cheer and all agree that the shoes are "the cutest ever". The Doctor steps out of an exam room to see what has caused all the commotion, and another brief fashion show erupts, with Twink strutting around showing off the new Twinkerbell footwear. The Doctor flashes a big grin and a thumbs up, and returns to his other patient.
We leave the exam rooms, and Twink passes by the Toy Bin. She peers inside to check the quality and quantity of the toys. Back to the waiting rooms.
PT/rehab: "Twinkle to rehab, please". Every time we go to Rehab - every time - we see the fruits of their labor. It is awe-inspiring to see all of these children who were never supposed to be able to do (fill in the blank) all busily working on their own personal miracles. Today, it is also crowded. We wait on the big elevated mat, and after a bit our Physical Therapist brings over the new set of exercises for Twinkle to learn.
There are six new exercises. Each one designed to work a specific set of muscles. Each one, 10 reps, twice daily. I lay next to Twink on the big mat, and we practice together. The PT shakes her head in wonder; she doesn't understand that we are laughing so that we won't cry. We take the Thera-Bands, the instruction sheets, and head back to the Clinic waiting rooms again.
A different voice announces for Orthotics & Prosthetics: "Twinkle to Orthotics & Prosthetics for Hugs & Kisses, please". Away she goes, down the familiar hallway like a shot. She rounds the corner into O&P and runs right into Big. Big is a giant of a man, with a booming laugh, an irrepressible smile, and a big old soft marshmallow heart. Big sweeps her up into a hug, sets her down, and they take off, hand-in-hand for a "table with a view". Big has been making Twinks braces since her first pair; over the years he has literally helped keep her and thousands of other children on their feet. Big leaves to grab Twinks chart, and J zips into the room. J has also worked here since we can remember; he comes in to tell Twinks that he will be moving away soon, to work at another Hospital. Big pops his head in, and tells us that he tried to warn the other Hospital, but they still hired J anyway. Amid the laughter, J asks if he can make Twinks brace - it will be his last project here, his swansong. Twinks asks Big if it will hurt his feelings. Big gives a huge theatrical sigh, and tells her that it's OK, because unlike J, he isn't going to move away and leave his best girl behind.
During all the joking, J and Big have been expertly making a mold of Twinks foot and leg. They put cotton stockinette over the skin, and then wrapped it quickly and snugly with fiberglass cast rolls. When the fiberglass has set completely, they mark it, and slice it once up the front from the toes to the knee, and pop her leg and foot free. Big marks the mold with her name and patient number, and the date we will return for her new AFO brace. Later, the mold will be used to create an exact replica of Twinkles foot and leg; they will actually mold the plastic of the brace onto this, so it is truly a custom-made brace. J now turns to the business of quickly checking her existing SMO; it requires a few adjustments. He compliments her on the number of stress marks in the plastic. J knows that means she has been wearing it faithfully; he tells us how often they see kids who never wear their braces - and never get better. The lesson is not lost on Twink. Big brings in a new "potato chip" for Twinks SMO; it is a soft, custom-molded foam piece that resembles a Pringles chip. It fits into the SMO and protects the top of her foot where it meets the ankle and the Velcro strap goes across.
Big and J give more hugs, and while I pick up more paperwork, Twink hands out more smiley face pins.
We are the last patients out of the Clinic on this day. We pull out of the parking lot, and escape Hospital City not long before evening rush hour begins.
Twink sleeps most of the first half of the way home. I don't notice much of the scenery today; I seem to be driving on autopilot across these roads that we have traveled so many times. My brain is numb with shock, I suppose. I'm still trying to absorb the news; digest the fact that the fusion is the best option, and will be so... permanent. The Wrench and I aren't novices; we have always known that her feet and legs will never be normal. We have been grateful for all that The Hospital has been able to do; although not "normal", her feet and legs are still much better than they were at birth. But this was still very hard to hear today. I try to imagine how her feet will work after the surgeries are complete; will she walk like a robot?
How do you walk if you can't bend your feet?
In three weeks we will go back so that Twinkle can be fitted with the new AFO. I'll have a list a questions for The Doctor, but I can find no comfort in this thought.
Twink wakes up as we are entering the hill country. The sunset is red, gold, pink, blue, and lavender; no mere camera can capture the intensity. The high, wispy clouds drape across the deep blue of the sky and reflect the incredible glowing colors of the setting sun. As the landscape melts away into the coming darkness, we top the first of the smaller mountains. I hear a hushed voice from the back seat: "Look, mama - it's the purple mountains majesty!"
We continue on towards home; we are down from the hill country, and the last faint glow of the sunset has faded. Now the darkness hugs the warm earth, interrupted only here and there by porch lights and headlights. Finally the city shines in the distance, familiar buildings made glamorous in their shimmering night-time attire of twinkling lights. We skirt the edge of the city on the outer loop, sailing around to our neighborhood. The expressways are nearly empty, the side streets almost devoid of traffic.
We are home. Unload the van, greet the cats, hug The Wrench. Read the mail (both e and snail) and collapse into bed. Tomorrow we start our new rehab routine, and we start crossing the days off of the calendar until Twinkle gets her new brace.
Ah, yes. When last we saw our brave little heroine, it was Wednesday morning, and she was waiting at the Clinic for her day to begin.
And so it did. With the first page of the day. At the Hospital, you get to hear your name called on the intercom. A lot.
First, for Weighs & Measures: "Twinkle to the scales, please". Weighs & Measures is what Twink has always called the scales. Why? Because, you get weighed, and then you get measured. Every time. It seems a rather ordinary thing to do, in this extraordinary place. Have you grown? Are you taller? Until she was five, they even measured the size of her head every year. Today, the nurse has a pen that lights up when she writes, and a little Minnie Mouse figure standing on top. Twinkle pulls the matching Mickey pen from her bag. She puts on a little play for the nurse and I.
"Oh Mickey, I love you so much!"
"Oh Minnie, it will never work out, because you live in Hospital City, and I live in Twinkle Town!"
Mickey and Minnie "kiss".
Mickey goes back into the backpack, and Minnie goes back to work with the nurse, along with a smiley face pin.
X-ray is next. "Twinkle to X-ray, please". The X-ray nurses are X-cited to see Twinkle. Two of the three X-nurses have been X-raying Twinks since she was a baby, and they tease her gently as they take a series of pictures designed to show The Doctor X-actly what is going on inside with Twinkles bones. We wait for the X-nurse to tell us that all of the X-ray pictures are X-tremely X-ellent before we X-it the X-ray waiting room. We hand-carry the X-rays back around to the Clinic, which lets the Clinic staff know that we are X-ceptionally ready to see the doctor.
Lunch. Food is great; Twinks eats like I haven't fed her for days. Lucky for me the prices are reasonable (the Hospital cafeteria is non-profit) and food is filling.
During lunch, The Doctor stops by our table. "I knew you were in the building!" he says to Twink. "How?" she asks. "Because I've seen a whole new crop of your smiley faces, so I knew you had to be here, even before I looked at my schedule for the day!" They hug, and he teases her that she will soon be taller than he is. He looks tired, and for the first time in eleven years I notice the gray at his temples, the deep lines etched in his face. This is the man who made Twinkle walk; he performed the surgery that gave her the use of her legs and feet when she was only a year old. He asks if he can send in his Nurse Practitioner today and explains they are short one doctor today, so everyone has extra patients. I tell him that we'll miss seeing him later, but to tell NP we are ready whenever she is. He hugs me also, then hurries off to grab his lunch. Later in the afternoon, I see his cafeteria tray in the Clinic, on his desk. The food has barely been touched.
After lunch, back to the waiting rooms on the Clinic side.
"Twinkle to exam room 5, please". Off we go to exam room 5. As with the entire building, the rooms are cheerful, bright, and extraordinarily clean. Each exam room has a different set of objects glued to the door that corresponds to the room number. Exam room 5 is marked by five Frisbees glued to the door. We wait for perhaps 10 minutes before Nurse Practitioner breezes in. More hugs for everyone, and Twinkle gives her a handful of her smiley face pins so that she can give anyone who needs one a smile. NP pockets the pins, and tells Twink that she can already think of several people who might need one before the day is over.
Just as quickly as she came in, she changes gears, and we can tell that it is time to get down to business. NP talks to Twinkle, not to me; as the patients get older, they are given the responsibility of their own care, and Twinkle is now considered to be old enough to be a "partner" in her own care. This means she has to listen carefully to what staff members tell her, and she must be ready to answer any questions they may have for her. NP sits next to Twinkle, and goes through the standard litany; current list of meds, allergies, list of known medical "issues". Twinkle shows off the new Twinkerbell shoes we brought; NP admires them, and teases her that if she isn't watching, she might grab them for herself. Now the smile fades from NP's face.
NP: Twinkle, The Doctor has looked at your X-rays. He said to tell you that there is good news, and bad news.The discussion turns to Twinks braces. The NP is worried that current SMO setup (small braces that extend just a few inches above the top of her high-top tennies) is not the best thing for Twinkle. NP tells us that Twink needs to obtain "maximum flexibility" in her feet and lower legs; this will help with (ultimately) post-surgical recovery and in the short-term may help her feet to function a bit better. So, an order is written for PT/Rehab.
Twink: OK
NP: The good news is that your leg length discrepancy is not getting worse. In fact, The Doctor says you can try to go without an external lift for now if you want to. Your recent growth spurt evened you out a bit!
Twink: WooHOO! No more lift, uh-huh, it's my birthday...
NP: But, Twinkle, the bad news is that The Doctor is really worried about your feet. I know you don't remember, because you were a baby, but you do know that The Doctor operated on you when you were a baby, right?
(Twinkle, now quiet, nods yes)
NP: Well, the problem is that all those little joints in your feet, every single one of them, are inflamed now. That's what is causing the pain. Do you understand what inflammation is?(Twink nods yes again)
NP: You have arthritis in both of your feet, Twinkle.
(NP turns to me for a moment) You'll be glad to know that it's not Juvenile Arthritis, but rather osteo.
(Np turns back to Twinkle) So, what is happening is that every time you step down, all of those joints in your feet hurt because they are inflamed. They are inflamed because before you were born, your feet didn't grow right. Because they didn't grow right, the joints don't work right. They don't line up like they should, and they don't flex and work like normal joints do. Twink, it doesn't matter what The Doctor does, those joints aren't ever going to be right.
(Twink swallows hard, but nods. She's sitting on the edge of the table, the feet in question are swinging back and forth. I'm standing, but suddenly realize I should be sitting, and drag a chair over to the end of the table)
NP: The Doctor wants to operate on your feet, Twinkle. He wants to go in there, and fuse all of those joints from here (she indicates where the toes meet the foot) back.
The room is completely silent for moment. I remind myself to try and breathe. A single tear slips down Twinks face. She gets it, she already knows what the answer will be, but she has to ask.
Twinkle: So I'll be able to walk, but I won't be able to...
NP: It will be like your feet are frozen. They won't be able to bend, or flex at all. All the joints will be fused. Once all the joints have been fused, it should eliminate most of the pain you are having whenever you stand or walk. But it can't be undone, Twink. The Doctor said that it is very important for you to remember that.
Twink: But I will be able to walk, right?
NP: Well, not like you can now. It will be different.
Twink: When do I have to have the surgery?
NP: The Doctor wants you to think about this - a lot. He wants you to do some more growing, too. If he does this operation before your feet are done growing, it might cause some other problems, so you have to be a few years older before we can even do the surgery.
(Now I'm the one trying not to cry. I can't stand the thought of Twink suffering with every step for the next four to six years)
Twinkle: (brightens) So I don't have to decide today?
NP: No - we don't want you to decide today. Today, we just wanted you to start thinking about it. We want you to know that there is something The Doctor can do, but not until you are done growing. You have to think about this, Twinkle. It's a big decision, and we want to make sure that it is the right decision for you.
Twink: But it still hurts until then. Why can't we do something about the hurting part before I quit growing? Like NOW?
While acknowledging the need for PT/rehab I also ask if the braces can't be extended somehow, to enclose her foot more fully and hold it in place better. NP says that the concern is that the foot and ankle may atrophy further than they already have. I point out that the shorter SMO is not doing the job we need it to do; if I understand the primary issue, we need to hold her foot steady and still; that should (in theory) help reduce the amount of joint movement, which should (in theory) reduce the amount of pain. NP agrees, and the option of a hinged AFO, which will go up to just under Twinkles knees, is agreed upon after talking to Twink about the seriousness of doing her rehab daily.
Finally, NP wants Twink to try and use the wheelchair as little as is possible. She is worried that Twink will sit down and never get back up. We talk about when Twinkle should use it, and Twinkle agrees to try and use it as little as possible for the next three weeks. NP gets ready to leave, and schedules Twink for both PT/rehab and O&P to be fitted for the new braces. She hugs both of us again, and moves to the door. "Let's go show off your new shoes".
Twink and NP head off to the hallway where the doctors and nurses offices are, and an impromptu fashion show is held. The nurses cheer and all agree that the shoes are "the cutest ever". The Doctor steps out of an exam room to see what has caused all the commotion, and another brief fashion show erupts, with Twink strutting around showing off the new Twinkerbell footwear. The Doctor flashes a big grin and a thumbs up, and returns to his other patient.
We leave the exam rooms, and Twink passes by the Toy Bin. She peers inside to check the quality and quantity of the toys. Back to the waiting rooms.
PT/rehab: "Twinkle to rehab, please". Every time we go to Rehab - every time - we see the fruits of their labor. It is awe-inspiring to see all of these children who were never supposed to be able to do (fill in the blank) all busily working on their own personal miracles. Today, it is also crowded. We wait on the big elevated mat, and after a bit our Physical Therapist brings over the new set of exercises for Twinkle to learn.
There are six new exercises. Each one designed to work a specific set of muscles. Each one, 10 reps, twice daily. I lay next to Twink on the big mat, and we practice together. The PT shakes her head in wonder; she doesn't understand that we are laughing so that we won't cry. We take the Thera-Bands, the instruction sheets, and head back to the Clinic waiting rooms again.
A different voice announces for Orthotics & Prosthetics: "Twinkle to Orthotics & Prosthetics for Hugs & Kisses, please". Away she goes, down the familiar hallway like a shot. She rounds the corner into O&P and runs right into Big. Big is a giant of a man, with a booming laugh, an irrepressible smile, and a big old soft marshmallow heart. Big sweeps her up into a hug, sets her down, and they take off, hand-in-hand for a "table with a view". Big has been making Twinks braces since her first pair; over the years he has literally helped keep her and thousands of other children on their feet. Big leaves to grab Twinks chart, and J zips into the room. J has also worked here since we can remember; he comes in to tell Twinks that he will be moving away soon, to work at another Hospital. Big pops his head in, and tells us that he tried to warn the other Hospital, but they still hired J anyway. Amid the laughter, J asks if he can make Twinks brace - it will be his last project here, his swansong. Twinks asks Big if it will hurt his feelings. Big gives a huge theatrical sigh, and tells her that it's OK, because unlike J, he isn't going to move away and leave his best girl behind.
During all the joking, J and Big have been expertly making a mold of Twinks foot and leg. They put cotton stockinette over the skin, and then wrapped it quickly and snugly with fiberglass cast rolls. When the fiberglass has set completely, they mark it, and slice it once up the front from the toes to the knee, and pop her leg and foot free. Big marks the mold with her name and patient number, and the date we will return for her new AFO brace. Later, the mold will be used to create an exact replica of Twinkles foot and leg; they will actually mold the plastic of the brace onto this, so it is truly a custom-made brace. J now turns to the business of quickly checking her existing SMO; it requires a few adjustments. He compliments her on the number of stress marks in the plastic. J knows that means she has been wearing it faithfully; he tells us how often they see kids who never wear their braces - and never get better. The lesson is not lost on Twink. Big brings in a new "potato chip" for Twinks SMO; it is a soft, custom-molded foam piece that resembles a Pringles chip. It fits into the SMO and protects the top of her foot where it meets the ankle and the Velcro strap goes across.
Big and J give more hugs, and while I pick up more paperwork, Twink hands out more smiley face pins.
We are the last patients out of the Clinic on this day. We pull out of the parking lot, and escape Hospital City not long before evening rush hour begins.
Twink sleeps most of the first half of the way home. I don't notice much of the scenery today; I seem to be driving on autopilot across these roads that we have traveled so many times. My brain is numb with shock, I suppose. I'm still trying to absorb the news; digest the fact that the fusion is the best option, and will be so... permanent. The Wrench and I aren't novices; we have always known that her feet and legs will never be normal. We have been grateful for all that The Hospital has been able to do; although not "normal", her feet and legs are still much better than they were at birth. But this was still very hard to hear today. I try to imagine how her feet will work after the surgeries are complete; will she walk like a robot?
How do you walk if you can't bend your feet?
In three weeks we will go back so that Twinkle can be fitted with the new AFO. I'll have a list a questions for The Doctor, but I can find no comfort in this thought.
Twink wakes up as we are entering the hill country. The sunset is red, gold, pink, blue, and lavender; no mere camera can capture the intensity. The high, wispy clouds drape across the deep blue of the sky and reflect the incredible glowing colors of the setting sun. As the landscape melts away into the coming darkness, we top the first of the smaller mountains. I hear a hushed voice from the back seat: "Look, mama - it's the purple mountains majesty!"
We continue on towards home; we are down from the hill country, and the last faint glow of the sunset has faded. Now the darkness hugs the warm earth, interrupted only here and there by porch lights and headlights. Finally the city shines in the distance, familiar buildings made glamorous in their shimmering night-time attire of twinkling lights. We skirt the edge of the city on the outer loop, sailing around to our neighborhood. The expressways are nearly empty, the side streets almost devoid of traffic.
We are home. Unload the van, greet the cats, hug The Wrench. Read the mail (both e and snail) and collapse into bed. Tomorrow we start our new rehab routine, and we start crossing the days off of the calendar until Twinkle gets her new brace.
Wednesday, July 27, 2005
The longest day (Reader's Digest Condensed Version)
We are home.
We did indeed arrive at the Hospital early in the morning, and we were (literally) the last patient out of the Clinic in the afternoon.
We left Hospital City after 4:00 pm, and arrived home at around Midnight. For those of you keeping score at home, just under 400 miles in 7 hours, 44 minutes. The minivan got around 19 mph.
We are scheduled to go back, and do it all again in three weeks.
More after I sleep.
We did indeed arrive at the Hospital early in the morning, and we were (literally) the last patient out of the Clinic in the afternoon.
We left Hospital City after 4:00 pm, and arrived home at around Midnight. For those of you keeping score at home, just under 400 miles in 7 hours, 44 minutes. The minivan got around 19 mph.
We are scheduled to go back, and do it all again in three weeks.
More after I sleep.
Tuesday, July 26, 2005
Dateline: Hospital City via dial-up
We left this morning for Hospital City. This time, we are driving our own minivan. We don't have to drive ourselves; our local Shrine Temple runs a fleet of vans, driven by volunteers that shuttle children and parents to and from the Hospitals. These vans run six days a week; they never leave for Hospital City empty. We have chosen to drive ourselves this time because of the possibility that we may have to spend a rare, extra night in Hospital City. Plus, with the need to take the wheelchair along, it will just be easier for us to travel with our own vehicle this time.
We left our city in the morning via the smooth and elegant expressways, but spent much of the day on "blue highways" and rural backroads. The path we trace is as direct as is possible; because we don't consider it to be a pleasure trip, we don't worry about scenic by-ways or opportunities to stop at historical landmarks. We will cross the same river twice as we drive towards the Hospital, slide through gentle mountain passes, glide over flatlands and prairies. The shade of the old trees as they arch over the country roads creates a welcome respite from the sun; it is like flying down a great, green tunnel. The sky is summer-white hot; the sun so bright that it washes all the blue from the sky. There has been enough rain that everything is green and lush, but it is the hard, brilliant green of late summer and Binney & Smith, not the soft hopeful, tender hues of spring, or the dried up rusty, tired palette of fall. Back onto the expressway for the last 30 miles into the city, the billboards are a jarring reminder of civilization.
Once in the city, we take refuge at a small local hotel. Other families that will be going to the Hospital in the morning are here also, we naturally gravitate together. Vans full of children, marked with the name of the Shrine Temple that transports them, will later form rows on the sticky black asphalt of the parking lot. This is "home away from home" for us; we know this neighborhood almost as well as we know our own at home. The Shriners have reserved our room here, just as they have for all of these children and their families. Each family has it's own room, to help preserve their privacy and dignity. The Shriners have a saying "We have one price for treatment at our Hospitals... FREE". They aren't kidding. Aside from our meals (the theory being that you have to eat wherever your are) we will have no other out-of-pocket expense for any of our trips. Had we not had the Hospital, Twinkle would have passed her lifetime maximum on our insurance many years ago.
Sometimes we head out in the evening just to escape the hotel - we go to the mall, the local W-M, or an ice cream parlor. Anything to avoid another evening trapped in another generic hotel room. On a hot summer night like this, we will find everyone at the hotel pool. The kids splash and play until they are dragged reluctantly out of the water, and back to their hotel rooms.
In the morning, we will rise early - much earlier than at home. We will dress, and I will put everything back into the van. We won't eat the continental breakfast at the hotel, but will cruise through the still-quiet city streets to the Hospital. We will be there before 7:00 am, and will check in at the Clinic desk, then head over across the cavernous Common Room to the Cafeteria for breakfast. This is where our day will really start - with hugs and hellos from The Cafeteria Ladies. Those ladies are not only excellent cooks, but more importantly, they have known Twinks since she was just a baby - they are our friends. We hug, we catch up on stories of grandbabies and graduations, we eat breakfast as the room slowly fills with other patients, other parents, and Shriners.
At 8:00 am, when the Clinic "officially" opens for business, we will be there, ready and waiting, hoping that the Doctor will be able to help Twink with her pain.
If all goes as we hope it will, we will be home late Wednesday night, with a "new and improved" Twinkle.
We left our city in the morning via the smooth and elegant expressways, but spent much of the day on "blue highways" and rural backroads. The path we trace is as direct as is possible; because we don't consider it to be a pleasure trip, we don't worry about scenic by-ways or opportunities to stop at historical landmarks. We will cross the same river twice as we drive towards the Hospital, slide through gentle mountain passes, glide over flatlands and prairies. The shade of the old trees as they arch over the country roads creates a welcome respite from the sun; it is like flying down a great, green tunnel. The sky is summer-white hot; the sun so bright that it washes all the blue from the sky. There has been enough rain that everything is green and lush, but it is the hard, brilliant green of late summer and Binney & Smith, not the soft hopeful, tender hues of spring, or the dried up rusty, tired palette of fall. Back onto the expressway for the last 30 miles into the city, the billboards are a jarring reminder of civilization.
Once in the city, we take refuge at a small local hotel. Other families that will be going to the Hospital in the morning are here also, we naturally gravitate together. Vans full of children, marked with the name of the Shrine Temple that transports them, will later form rows on the sticky black asphalt of the parking lot. This is "home away from home" for us; we know this neighborhood almost as well as we know our own at home. The Shriners have reserved our room here, just as they have for all of these children and their families. Each family has it's own room, to help preserve their privacy and dignity. The Shriners have a saying "We have one price for treatment at our Hospitals... FREE". They aren't kidding. Aside from our meals (the theory being that you have to eat wherever your are) we will have no other out-of-pocket expense for any of our trips. Had we not had the Hospital, Twinkle would have passed her lifetime maximum on our insurance many years ago.
Sometimes we head out in the evening just to escape the hotel - we go to the mall, the local W-M, or an ice cream parlor. Anything to avoid another evening trapped in another generic hotel room. On a hot summer night like this, we will find everyone at the hotel pool. The kids splash and play until they are dragged reluctantly out of the water, and back to their hotel rooms.
In the morning, we will rise early - much earlier than at home. We will dress, and I will put everything back into the van. We won't eat the continental breakfast at the hotel, but will cruise through the still-quiet city streets to the Hospital. We will be there before 7:00 am, and will check in at the Clinic desk, then head over across the cavernous Common Room to the Cafeteria for breakfast. This is where our day will really start - with hugs and hellos from The Cafeteria Ladies. Those ladies are not only excellent cooks, but more importantly, they have known Twinks since she was just a baby - they are our friends. We hug, we catch up on stories of grandbabies and graduations, we eat breakfast as the room slowly fills with other patients, other parents, and Shriners.
At 8:00 am, when the Clinic "officially" opens for business, we will be there, ready and waiting, hoping that the Doctor will be able to help Twink with her pain.
If all goes as we hope it will, we will be home late Wednesday night, with a "new and improved" Twinkle.
Sunday, July 24, 2005
Filling the toy bin, Twinkle-style
It's time for The Last Big Thing on my pre-trip "To Do" list. Everything else is done, completed, marked off.
This is usually the last chore before we leave on a Hospital trip. Aside from the last-minute ritual of throwing clothes in the general vicinity of the open suitcase, carefully packing the laptop, and loading approximately seven hundred million pounds of unneeded stuff into the back seat of the van that Twink "...just can't live without, Mom". You would think we were going on a mission to Mars, the way this kid drags along everything she owns.
But today, Twinkle went to get the toys.
At the Hospital, there is a huge toy bin in the Clinic. As each child gets done, they pass by the toy bin, and they pick out a toy or two. When Twink was just a baby, we learned that there is a never-ending struggle just to keep that bin full of toys for the kids at the clinic. That was when we started saving our "Happy Meal" toys.
You know - the toys that come with most fast-food kiddie meals. These toys are remarkable in that kids universally seem to want them - and instinctively seem to know how they work, and who or what they are without even *glancing* at the wrapper that the toy came in.
So there we were (probably tens years ago now) with a bag full of fast-food toys; we took them with us to the Hospital the next trip. They were so grateful to get this puny little bag of freebie toys; it really made me sad to think that there might be kids who didn't get a toy after going through Clinic. That was when we decided to start saving all of our fast-food toys for the toy bin at the Clinic.
And save them we did. I've lost count of how many bags and bags and bags of toys we have taken along to the Hospital over the years. We have also gotten our friends, families, and neighbors in on it; they help us save toys for the toy bin also. We never ask a child to give up a toy - we only ask that if they get a duplicate, or a toy that they don't want, to please set it aside, and we'll take it with us.
So, today we went around and collected up all the toys we could. It was a great day; we have filled a huge box that we will take with us. I know that it won't fill the toy bin even half full, but it will help. Twinkle loves to gather the toys, and as she has gotten older, she has taken this on as her own project. I'm so proud of her; she even sorts them out, so that there is a separate group of "baby-safe" toys for the patients that are ages three and under.
We'll deliver the toys on Wednesday, when we go to the Hospital.
The kicker to this whole thing is that Twink typically doesn't take a toy from the bin. It's not that she doesn't appreciate the idea; she's a kid, after all - free stuff means you don't have to spend any of your hard-earned allowance. But for the last couple of years, she has been so focused on filling the toy bin, that she never takes any for herself. She's already figured out how great the joy of giving is.
She really is the most incredible kid. I often wonder what we did, how we got so lucky to be her parents.
This is usually the last chore before we leave on a Hospital trip. Aside from the last-minute ritual of throwing clothes in the general vicinity of the open suitcase, carefully packing the laptop, and loading approximately seven hundred million pounds of unneeded stuff into the back seat of the van that Twink "...just can't live without, Mom". You would think we were going on a mission to Mars, the way this kid drags along everything she owns.
But today, Twinkle went to get the toys.
At the Hospital, there is a huge toy bin in the Clinic. As each child gets done, they pass by the toy bin, and they pick out a toy or two. When Twink was just a baby, we learned that there is a never-ending struggle just to keep that bin full of toys for the kids at the clinic. That was when we started saving our "Happy Meal" toys.
You know - the toys that come with most fast-food kiddie meals. These toys are remarkable in that kids universally seem to want them - and instinctively seem to know how they work, and who or what they are without even *glancing* at the wrapper that the toy came in.
So there we were (probably tens years ago now) with a bag full of fast-food toys; we took them with us to the Hospital the next trip. They were so grateful to get this puny little bag of freebie toys; it really made me sad to think that there might be kids who didn't get a toy after going through Clinic. That was when we decided to start saving all of our fast-food toys for the toy bin at the Clinic.
And save them we did. I've lost count of how many bags and bags and bags of toys we have taken along to the Hospital over the years. We have also gotten our friends, families, and neighbors in on it; they help us save toys for the toy bin also. We never ask a child to give up a toy - we only ask that if they get a duplicate, or a toy that they don't want, to please set it aside, and we'll take it with us.
So, today we went around and collected up all the toys we could. It was a great day; we have filled a huge box that we will take with us. I know that it won't fill the toy bin even half full, but it will help. Twinkle loves to gather the toys, and as she has gotten older, she has taken this on as her own project. I'm so proud of her; she even sorts them out, so that there is a separate group of "baby-safe" toys for the patients that are ages three and under.
We'll deliver the toys on Wednesday, when we go to the Hospital.
The kicker to this whole thing is that Twink typically doesn't take a toy from the bin. It's not that she doesn't appreciate the idea; she's a kid, after all - free stuff means you don't have to spend any of your hard-earned allowance. But for the last couple of years, she has been so focused on filling the toy bin, that she never takes any for herself. She's already figured out how great the joy of giving is.
She really is the most incredible kid. I often wonder what we did, how we got so lucky to be her parents.
Saturday, July 23, 2005
Twinkerbell shoes!
So, it's Saturday evening. Twinkle, The Wrench and I head off to our favorite Tex-Mex place. We are having a great time; Daddy and his little Princess are on one side of the table, and I'm sitting opposite, looking at the two people I love most in all the world, watching them laugh, and play. The chips are crunching, the salsa is zinging, the fajitas are sizzling, and life is good.
Suddenly I remember what else we have to do tonight. Or I should say, what we have to try to get done tonight, or maybe tomorrow if we are lucky, and most certainly by Monday night at the very latest.
That's because another pre-Hospital ritual is shoe shopping. Aside from the fact that women have a love affair with the shoe store that most men simply cannot fathom, we have a very practical reason for going shopping tonight.
After a hundred-eleventy-two gazillion trips to the Hospital, we have learned to always take along a new pair of shoes. This comes from Mommy's Observations on the Availability of Shoes:
We have paid attention - we have learned: We shop *before* we go.
One of Twinkle's many problems is that she appears to have a "significant" leg length discrepancy. In other words, it looks like one leg is quite a bit shorter than the other. The great majority of us human-types actually have one leg that is a tiny bit shorter than the other - just as most of us have one foot that is slightly smaller than the other. Twinkle falls into a different category; her leg bones from the hip to the knee, and from the knee to the ankle (the ones that usually can be surgically corrected to fix the problem) are close enough to the same length; most of her discrepancy actually occurs from the ankle to the floor. I guess you could say that one of her feet is actually shorter than the other.
So... the correction has to occur at the shoe. This means trying to find shoes that make the Doctor happy, and that also make our friends in the O&P department (Orthotics & Prosthetics) happy. The doctor wants shoes that will support her ankles, and that have good arch support. O&P wants shoes that have a certain type of bottom on them; they can *make* everything else happen (the arch support, the ankle support) if the shoes can be "lifted" correctly. Daddy and Mommy want shoes that will last longer than a week (she's really going through a growth spurt right now) and that will make Twinkle happy enough to put the braces on the feet, and put the feet into the shoes.
What is usually a long, drawn-out search for The Right Shoes was tonight blessedly, remarkably, wonderfully simple.
We didn't know it when we started, but what we needed was a pair of Tinkerbell shoes. They had the right kind of sole, that sparkly little pixie Tinkerbell on the sides, and beautiful pink satin ribbon laces. Just right for a girly-girl 'tween who is also a Tinkerbell fan.
Nearly ready to go on Tuesday. There's just one last important thing to do...
Suddenly I remember what else we have to do tonight. Or I should say, what we have to try to get done tonight, or maybe tomorrow if we are lucky, and most certainly by Monday night at the very latest.
That's because another pre-Hospital ritual is shoe shopping. Aside from the fact that women have a love affair with the shoe store that most men simply cannot fathom, we have a very practical reason for going shopping tonight.
After a hundred-eleventy-two gazillion trips to the Hospital, we have learned to always take along a new pair of shoes. This comes from Mommy's Observations on the Availability of Shoes:
Mommy's Observations on the Availability of Shoes
- If we don't have the shoes with us, then O&P will surely want the shoes right then and there.
- If we don't have the shoes with us, then the shoes will have to be sent back to the Hospital ASAP, and we will have to wait even longer for the corrected shoe(s) and/or orthotics and/or appliances.
- We never do a good job of shopping for shoes when we are under a deadline, tired, or stressed.
We have paid attention - we have learned: We shop *before* we go.
One of Twinkle's many problems is that she appears to have a "significant" leg length discrepancy. In other words, it looks like one leg is quite a bit shorter than the other. The great majority of us human-types actually have one leg that is a tiny bit shorter than the other - just as most of us have one foot that is slightly smaller than the other. Twinkle falls into a different category; her leg bones from the hip to the knee, and from the knee to the ankle (the ones that usually can be surgically corrected to fix the problem) are close enough to the same length; most of her discrepancy actually occurs from the ankle to the floor. I guess you could say that one of her feet is actually shorter than the other.
So... the correction has to occur at the shoe. This means trying to find shoes that make the Doctor happy, and that also make our friends in the O&P department (Orthotics & Prosthetics) happy. The doctor wants shoes that will support her ankles, and that have good arch support. O&P wants shoes that have a certain type of bottom on them; they can *make* everything else happen (the arch support, the ankle support) if the shoes can be "lifted" correctly. Daddy and Mommy want shoes that will last longer than a week (she's really going through a growth spurt right now) and that will make Twinkle happy enough to put the braces on the feet, and put the feet into the shoes.
What is usually a long, drawn-out search for The Right Shoes was tonight blessedly, remarkably, wonderfully simple.
We didn't know it when we started, but what we needed was a pair of Tinkerbell shoes. They had the right kind of sole, that sparkly little pixie Tinkerbell on the sides, and beautiful pink satin ribbon laces. Just right for a girly-girl 'tween who is also a Tinkerbell fan.
Nearly ready to go on Tuesday. There's just one last important thing to do...
Friday, July 22, 2005
A visit with The Pin Man
One of our "rituals" before going to the Hospital is to go see The Pin Man.
Twinkle has a world-class collection of pins that she has accumulated in the last eleven years of Hospital trips. She's a wicked little trader - shrewd and careful, she knows which pins have more value, which ones are fairly common. She has several in her collection that are "rare", and one in particular that was only given at a certain event, to certain Shriners.
When we get to the Hospital, she'll whip that big old book out, and Shriners will start to gather around her. Some to see what's new, others to trade, some just to admire this collection that all started out with one little pin. It's a fun way for her to pass the time in the Clinic waiting rooms, and when she gets done trading for the day, she goes around and passes out her pins to patients, and new Hospital Staff members.
Needless to say, she's always popular at the Hospital.
Long ago, Twinks decided that she wanted her own pin for trading. She wanted a pin that was instantly recognizable - so that if she saw it in someone else's collection, she would know it was one of hers right away.
In my life pre-Twinkle, I did business with a guy in our city who came to be listed in my Rolodex as simply "The Pin Man". If he didn't have what we needed in stock, he could get it. This guy is one of those old-school salesmen - he remembers every customer, every client. He can tell you every detail of every order they have placed with him over the years. He also has an exceptional memory for jokes; as someone who can't remember the pertinent details of Letterman's monologue 15 minutes later, I am amazed at his ability to carry all of these jokes around in his head.
So, I called The Pin Man. After a brief explanation, he says "Come on down, and bring Twinkle. We'll find something just right." Twinks was probably all of 5 years old at the time. Everything was high adventure at that age. Just going downtown in the city was a Big Deal, going downtown to see The Pin Man was almost as good as going to the circus!
Twinkle loves The Pin Man instantly. The walls are covered, floor to ceiling with examples of his trade. He looks over her growing collection, and they talk for a few minutes. He notices the silly little yellow smiley-face sticker on her shirt, and jokingly asks her if that is a picture of her. He shows her a beautiful sparkly smiley face pin. She's sold. That's it. Yellow smiley faces.
These silly little lapel pins are just one of the reasons that Twinkle never seems to mind the trip to Hospital City. They sparkle and gleam on the pages of her book, and each one holds a story or a memory for her. There are pins commemorating different Shrine Circus events, some for the "units" (like the guys in the little cars, or the clown groups, or the mounted patrols), and many are from the Potentates - the "head guy" of each Shrine Temple. She has traded with Shriners from all over the nation that come to the Hospital to visit; during one really memorable Hospital trip, the Shrine Convention was in town... and a large group just happened to show up at the Clinic, just as the Twinkster was opening her book. She really cleaned up that day - she scored so many pins that we had to add two pages to the book!
So, today we went to visit The Pin Man. Twink took along her book to show him, as always. They sat together, poring over the pages, admiring the designs as Twink narrated each one's purpose or meaning. We bought another bag of 50, a little plastic bag full of sunny little yellow smiley faces. I predict that well before we leave Hospital City that bag will be nearly empty.
And Twinkle will fill another page in her pin book with sparkly memories, and another spot in heart with new friends.
Twinkle has a world-class collection of pins that she has accumulated in the last eleven years of Hospital trips. She's a wicked little trader - shrewd and careful, she knows which pins have more value, which ones are fairly common. She has several in her collection that are "rare", and one in particular that was only given at a certain event, to certain Shriners.
When we get to the Hospital, she'll whip that big old book out, and Shriners will start to gather around her. Some to see what's new, others to trade, some just to admire this collection that all started out with one little pin. It's a fun way for her to pass the time in the Clinic waiting rooms, and when she gets done trading for the day, she goes around and passes out her pins to patients, and new Hospital Staff members.
Needless to say, she's always popular at the Hospital.
Long ago, Twinks decided that she wanted her own pin for trading. She wanted a pin that was instantly recognizable - so that if she saw it in someone else's collection, she would know it was one of hers right away.
In my life pre-Twinkle, I did business with a guy in our city who came to be listed in my Rolodex as simply "The Pin Man". If he didn't have what we needed in stock, he could get it. This guy is one of those old-school salesmen - he remembers every customer, every client. He can tell you every detail of every order they have placed with him over the years. He also has an exceptional memory for jokes; as someone who can't remember the pertinent details of Letterman's monologue 15 minutes later, I am amazed at his ability to carry all of these jokes around in his head.
So, I called The Pin Man. After a brief explanation, he says "Come on down, and bring Twinkle. We'll find something just right." Twinks was probably all of 5 years old at the time. Everything was high adventure at that age. Just going downtown in the city was a Big Deal, going downtown to see The Pin Man was almost as good as going to the circus!
Twinkle loves The Pin Man instantly. The walls are covered, floor to ceiling with examples of his trade. He looks over her growing collection, and they talk for a few minutes. He notices the silly little yellow smiley-face sticker on her shirt, and jokingly asks her if that is a picture of her. He shows her a beautiful sparkly smiley face pin. She's sold. That's it. Yellow smiley faces.
These silly little lapel pins are just one of the reasons that Twinkle never seems to mind the trip to Hospital City. They sparkle and gleam on the pages of her book, and each one holds a story or a memory for her. There are pins commemorating different Shrine Circus events, some for the "units" (like the guys in the little cars, or the clown groups, or the mounted patrols), and many are from the Potentates - the "head guy" of each Shrine Temple. She has traded with Shriners from all over the nation that come to the Hospital to visit; during one really memorable Hospital trip, the Shrine Convention was in town... and a large group just happened to show up at the Clinic, just as the Twinkster was opening her book. She really cleaned up that day - she scored so many pins that we had to add two pages to the book!
So, today we went to visit The Pin Man. Twink took along her book to show him, as always. They sat together, poring over the pages, admiring the designs as Twink narrated each one's purpose or meaning. We bought another bag of 50, a little plastic bag full of sunny little yellow smiley faces. I predict that well before we leave Hospital City that bag will be nearly empty.
And Twinkle will fill another page in her pin book with sparkly memories, and another spot in heart with new friends.
The little weasel has a name...
Ha!
It didn't take long, really. The little jerk who thought he was so clever has been ID'd.
An acquaintance who actually witnessed the event, but didn't know what was said (she was one row over, and couldn't hear anything.) called me not long after we got home. She said the look on my face was "terrifying". Looking back from this perspective several hours later, I believe that might be one of the greater understatements I have heard recently. I probably scared the kid, and his mom, out of a years growth.
The acquaintance knows his name, what elementary school he attends, even what church his family goes to. She was aghast at the exchange, and offered to procure an apology for Twinkle.
On the way home from The Big W-M, Twinks and I had a long conversation. We talked about why someone would ever say something like that, and Twinkle wanted to know why his mom didn't march him back around and make him apologize. (pointing out correctly that she would never have been allowed to get away with something like that...) She worried that other people might look at her and feel the same way. That they would never know that she isn't always in the chair, they would never know the truth about her. She didn't want to be pitied. She just wants to be...
Normal.
And then an amazing thing happened. Right then and there, Twinkle gave this kid absolution; in her sweet little voice she told me that she felt sorry for him. "Because, I'm just a kid in a wheelchair... but people like him are the ones that are really disabled. "
By the time we pulled into our own driveway, Twinkle was over it. She had been upset, to be sure, but as far as she was concerned, it was done - over - finished. She was at peace.
So, I turned down the chance at the information, and the apology. Why? Because I knew the apology would be meaningless to the kid, and his parents. They would be doing it for all the wrong reasons. They won't ever understand; they have never lived on our side of Normal, and if they are lucky, they won't ever have to. Finally, because I can't dwell on people who are like that; if I do, I let the toxicity of their attitude poison my soul. And that would mean that I'm not being the best mother, and/or the best role model that I can be, that I should be for this incredible child.
So, it really is done, it really is over, it really is finished.
Twinkle was right. She's not really the disabled one. She's just a kid in a wheelchair.
It didn't take long, really. The little jerk who thought he was so clever has been ID'd.
An acquaintance who actually witnessed the event, but didn't know what was said (she was one row over, and couldn't hear anything.) called me not long after we got home. She said the look on my face was "terrifying". Looking back from this perspective several hours later, I believe that might be one of the greater understatements I have heard recently. I probably scared the kid, and his mom, out of a years growth.
The acquaintance knows his name, what elementary school he attends, even what church his family goes to. She was aghast at the exchange, and offered to procure an apology for Twinkle.
On the way home from The Big W-M, Twinks and I had a long conversation. We talked about why someone would ever say something like that, and Twinkle wanted to know why his mom didn't march him back around and make him apologize. (pointing out correctly that she would never have been allowed to get away with something like that...) She worried that other people might look at her and feel the same way. That they would never know that she isn't always in the chair, they would never know the truth about her. She didn't want to be pitied. She just wants to be...
Normal.
And then an amazing thing happened. Right then and there, Twinkle gave this kid absolution; in her sweet little voice she told me that she felt sorry for him. "Because, I'm just a kid in a wheelchair... but people like him are the ones that are really disabled. "
By the time we pulled into our own driveway, Twinkle was over it. She had been upset, to be sure, but as far as she was concerned, it was done - over - finished. She was at peace.
So, I turned down the chance at the information, and the apology. Why? Because I knew the apology would be meaningless to the kid, and his parents. They would be doing it for all the wrong reasons. They won't ever understand; they have never lived on our side of Normal, and if they are lucky, they won't ever have to. Finally, because I can't dwell on people who are like that; if I do, I let the toxicity of their attitude poison my soul. And that would mean that I'm not being the best mother, and/or the best role model that I can be, that I should be for this incredible child.
So, it really is done, it really is over, it really is finished.
Twinkle was right. She's not really the disabled one. She's just a kid in a wheelchair.
Thursday, July 21, 2005
"I feel sorry for you"
So, Twinkster and I are at The Big W-M. Getting some groceries, looking at DVD's, picking up an prescription at the Pharmacy - why, it's darn near like one of those happy advertisements you see on television, without the yellow smiley faces bouncing around, and with a sparkly little girl in a wheelchair.
As usual, Twinkle and I have a dialog running; we're talking, giggling, having as much fun as we can without actually getting kicked out of the store. She's zipping off ahead of me, trying to drag me to the makeup counters to plead for new lip gloss, or over to clothing to see if she can wheedle a new swimsuit. She darts over to the crafts department, to pick out some buttons for a new dress, and then before I can stop her, she's off again, and I'm pushing the cart behind her as fast as I can.
So, it's all good, right? We are having one of those rare days, where being in the chair isn't an issue, and for once, I can look at her in that wheelchair without feeling like my heart has been torn out. It's a great, summery July day - we even joke about taking the wheelchair through the carwash, to shine it up.
Suddenly, out of nowhere, a kid - just this short, dumpy, nasty little kid - walks up to Twink, leans in, and says
"I feel sorry for you"
His mother grabs him by the shoulder, and begins to propel him off to the left. I look at Twink's face - she's stunned. All the color has drained from her face, her eyes are full of tears, and she is fighting hard not to cry here in front of everyone.
I spin around, and grab the mothers sleeve, and say "I feel sorry for YOU. She might be in a wheelchair, but she isn't a narrow-minded bigot like your kid".
The mother shrugs me off, and now half-running, pushes the fat little monster ahead of her towards the door. She glances back twice to see if we are still there, or following her, and they disappear into the swirling crowds in the parking lot.
Twinkle is devastated. Our happy afternoon is gone - the jokes and the fun are forgotten in the wake of one nasty little bastard, and his condescending remark.
I'm still seeing red.
As usual, Twinkle and I have a dialog running; we're talking, giggling, having as much fun as we can without actually getting kicked out of the store. She's zipping off ahead of me, trying to drag me to the makeup counters to plead for new lip gloss, or over to clothing to see if she can wheedle a new swimsuit. She darts over to the crafts department, to pick out some buttons for a new dress, and then before I can stop her, she's off again, and I'm pushing the cart behind her as fast as I can.
So, it's all good, right? We are having one of those rare days, where being in the chair isn't an issue, and for once, I can look at her in that wheelchair without feeling like my heart has been torn out. It's a great, summery July day - we even joke about taking the wheelchair through the carwash, to shine it up.
Suddenly, out of nowhere, a kid - just this short, dumpy, nasty little kid - walks up to Twink, leans in, and says
"I feel sorry for you"
His mother grabs him by the shoulder, and begins to propel him off to the left. I look at Twink's face - she's stunned. All the color has drained from her face, her eyes are full of tears, and she is fighting hard not to cry here in front of everyone.
I spin around, and grab the mothers sleeve, and say "I feel sorry for YOU. She might be in a wheelchair, but she isn't a narrow-minded bigot like your kid".
The mother shrugs me off, and now half-running, pushes the fat little monster ahead of her towards the door. She glances back twice to see if we are still there, or following her, and they disappear into the swirling crowds in the parking lot.
Twinkle is devastated. Our happy afternoon is gone - the jokes and the fun are forgotten in the wake of one nasty little bastard, and his condescending remark.
I'm still seeing red.
Wednesday, July 20, 2005
"You need to come back to the Hospital"
After several bad days (and nights) for Twinkle, The Wrench and I decided it was time to call down to the Hospital to see if they had any ideas. A flurry of phone calls ensued, and then this afternoon, the last one brought the words that still make me cringe, even after all these years:
"You need to come back to the Hospital".
Inside I am screaming; we were just there, just 6 weeks ago. On the outside, I wait for the appointment time and date. The Nurse and I make small talk while the computer churns, and she tries to find where they can fit us in. This is their busy time of the year; all the parents want the kids to get their annual checkups, or have surgery during the summer when they don't have to miss any school. I tell the Nurse that we will see them on Wednesday, at 1:00 pm.
I hate afternoon appointments. Get done at the Hospital too late in the day, and you wind up back at the hotel for another "lovely" evening. Get done by 3:00 pm, and if you are lucky, you can be home by midnight. This time, it doesn't sound too promising - the Doctor wants a whole new set of diagnostic x-rays. Plus we have to spend time at O&P (Orthotics & Prosthetics). The Nurse tells me to plan on having dinner in Hospital City on Wednesday. Mental note to self: tell the Transportation staff at our local Shriners Temple that we will need a hotel room for two nights, instead of the usual one.
We have been going to the Hospital since Twinkle was a baby. It is a long and tiring trip, and she makes it every time like a champ. She doesn't mind going at all; you would think that we would have to drag her there, kicking and screaming. When she was four years old, she told us that she likes to go, because she knows that all of the doctors and nurses are just trying to help her pain go away. Amazing kid.
So, here I am again, going over the master list that I have been keeping, refining, for more than a decade now. Not much preparation is actually required; I learned years ago to keep a set of bags packed with everything we need except clothing and prescriptions. The Wrench keeps the minivan in traveling condition all the time; it's ready to go. A fast trip to the grocery store, or The Big W-M will take care of the snacks. Load the wheelchair, the suitcase, the laptop, the ice chest. Gas and ice on the way out of town. We'll be off and running.
It is eight hours driving time, door-to-door. Twink & I will go it alone - Daddy/The Wrench has to go to work. We will have to stop every 90 minutes or so; two hours is the maximum "seat time" that Twinkle can endure without getting stiff, which causes more pain. We make this run so often that we know every place to stop along the way - there are familiar faces and places for the entire 400 mile route.
We will leave on Tuesday, and drive to Hospital City. Hospital on Wednesday, and (hopefully) drive home Wednesday.
Exhaustion on Thursday.
"You need to come back to the Hospital".
Inside I am screaming; we were just there, just 6 weeks ago. On the outside, I wait for the appointment time and date. The Nurse and I make small talk while the computer churns, and she tries to find where they can fit us in. This is their busy time of the year; all the parents want the kids to get their annual checkups, or have surgery during the summer when they don't have to miss any school. I tell the Nurse that we will see them on Wednesday, at 1:00 pm.
I hate afternoon appointments. Get done at the Hospital too late in the day, and you wind up back at the hotel for another "lovely" evening. Get done by 3:00 pm, and if you are lucky, you can be home by midnight. This time, it doesn't sound too promising - the Doctor wants a whole new set of diagnostic x-rays. Plus we have to spend time at O&P (Orthotics & Prosthetics). The Nurse tells me to plan on having dinner in Hospital City on Wednesday. Mental note to self: tell the Transportation staff at our local Shriners Temple that we will need a hotel room for two nights, instead of the usual one.
We have been going to the Hospital since Twinkle was a baby. It is a long and tiring trip, and she makes it every time like a champ. She doesn't mind going at all; you would think that we would have to drag her there, kicking and screaming. When she was four years old, she told us that she likes to go, because she knows that all of the doctors and nurses are just trying to help her pain go away. Amazing kid.
So, here I am again, going over the master list that I have been keeping, refining, for more than a decade now. Not much preparation is actually required; I learned years ago to keep a set of bags packed with everything we need except clothing and prescriptions. The Wrench keeps the minivan in traveling condition all the time; it's ready to go. A fast trip to the grocery store, or The Big W-M will take care of the snacks. Load the wheelchair, the suitcase, the laptop, the ice chest. Gas and ice on the way out of town. We'll be off and running.
It is eight hours driving time, door-to-door. Twink & I will go it alone - Daddy/The Wrench has to go to work. We will have to stop every 90 minutes or so; two hours is the maximum "seat time" that Twinkle can endure without getting stiff, which causes more pain. We make this run so often that we know every place to stop along the way - there are familiar faces and places for the entire 400 mile route.
We will leave on Tuesday, and drive to Hospital City. Hospital on Wednesday, and (hopefully) drive home Wednesday.
Exhaustion on Thursday.
Tuesday, July 19, 2005
Another long night on the floor
Twinkle is hurting tonight, and it's bad.
None of the usual tricks work. I try everything I can think of, and even pull a few things out of thin air, hopeful that I can distract her pain away. Nothing. Nada. Zip. Zilch. Zero. It doesn't work.
So, I am sitting here, on the floor, next to her bed, as I often do in the wee small hours of the morning. Her perfect little right hand hangs off the side, and rests lightly on my shoulder; it is her way of making certain that I stay nearby, even in her fitful sleep. I sit here, feeling useless and incompetent, unable to even provide a decent night's sleep for her.
One of the things that I dread on a night like this one is the terrible loneliness. At three or four in the morning, there aren't a whole lot of people around here interested in conversation. If there was someone here, someone who could say to me "You really are doing the best you can" it might make it easier for me somehow.
And then, I think of Twinks. She's the one who I should be concerned with. I'm so selfish sometimes. She just rolled over, sighing in her sleep. That particular sigh means that she has crossed back over into the world of dreams, where she doesn't feel the pain, or have to fight the fear. Twinkle is the one who usually comforts me. When she calls for me to come and stay by her side, she is the one who will tell me that "When you are here, it doesn't hurt so bad". Twinkle is the one who hugs the stuffing out of me, and crowns me as The Best Mommy in The World. Twinks is somehow *my* cheerleader, crossing the boundary between parent and child to reassure me that I'm doing a good job.
The Wrench has to go to work in a few hours, so I encourage him to go to sleep. The cats will keep me company.
None of the usual tricks work. I try everything I can think of, and even pull a few things out of thin air, hopeful that I can distract her pain away. Nothing. Nada. Zip. Zilch. Zero. It doesn't work.
So, I am sitting here, on the floor, next to her bed, as I often do in the wee small hours of the morning. Her perfect little right hand hangs off the side, and rests lightly on my shoulder; it is her way of making certain that I stay nearby, even in her fitful sleep. I sit here, feeling useless and incompetent, unable to even provide a decent night's sleep for her.
One of the things that I dread on a night like this one is the terrible loneliness. At three or four in the morning, there aren't a whole lot of people around here interested in conversation. If there was someone here, someone who could say to me "You really are doing the best you can" it might make it easier for me somehow.
And then, I think of Twinks. She's the one who I should be concerned with. I'm so selfish sometimes. She just rolled over, sighing in her sleep. That particular sigh means that she has crossed back over into the world of dreams, where she doesn't feel the pain, or have to fight the fear. Twinkle is the one who usually comforts me. When she calls for me to come and stay by her side, she is the one who will tell me that "When you are here, it doesn't hurt so bad". Twinkle is the one who hugs the stuffing out of me, and crowns me as The Best Mommy in The World. Twinks is somehow *my* cheerleader, crossing the boundary between parent and child to reassure me that I'm doing a good job.
The Wrench has to go to work in a few hours, so I encourage him to go to sleep. The cats will keep me company.
Monday, July 18, 2005
Who/What/Why/Where/When/How
(original post: 07/18/05 - updated 07/17/08)
Answers you didn't even know you wanted, to questions that you didn't even know existed...
Who are you? I am a the mother of a child who was born with many medical problems. I am also the daughter of a mother who has many medical problems, and now lives with us. I have chosen to use pseudonyms here to protect our family's privacy.
What does "creeping towards normal" mean? It means what it says. We (our little family) are creeping towards normal all the time. Every now and again we actually get to reach out and touch it!
Is it Twinkle? Or The Twinkie? Or Twinks? How many kids are there? Just one. Her nickname started out as Twinkle, however our friend Art Lad "renamed" Twinkle as The Twinkie, in honor of one of his favorite snack foods. When she started to blog, The Twinkie chose that as her pen name. Twinks is a deriative/pet name for The Twinkie. You may also see other mutations/iterations such as: Twinkster, LaTwink, Twinkette, TwinkleToes and my new personal favorite, Twinksy-Winksy...
What about your Mom? My Mom is suffering from Multi-Infarct Dementia. She is still beautiful, loving, and sweet, however, she is quite literally losing her mind...
And who is The Wrench? He's my husband of more than 20 years. He's also my rock, my hero, my boyfriend, my lover, my best friend. Sometimes I abbreviate him as "TW".
What company does The Wrench work for? Sorry. That's classified information. As you will gather through a close reading of this blog, he is a certified wrench (a mechanic) in the aviation industry. Like Our Friend Chuck, The Wrench works for a Really Large Airline (although not the same RLA as Our Friend Chuck)
What company do you work for? Sorry. That's classified information also. I "retired" before Twinkle was born, and do only the occasional odd consulting job nowadays.
Why are you writing this? Because I believe that there are other quietly desperate mothers and fathers out there. Sometimes in the middle of the night it is comforting just to know that you are not alone.
What all is wrong with your kid? :::taking a deep breath::: Here's the short list, of the major health issues that Twinks has been diagnosed with:
Why did it take you so long to start a blog? Ha! If you only knew... There is great irony in the fact that I am probably the last person in America to jump on the blogging bandwagon (and, my personal prediction is that since I have now done so, tomorrow morning something better than blogging will come along, and I'll have to procrastinate on that) Actually, there are more reasons than I have time to post, and you have time to read. I finally settled on Blogger one night, and jumped in with both feet.
Where do you live? In the suburbs, just outside a major metropolitan area, somewhere in the middle 9/10ths of the country.
Where is The Hospital that Twinkle goes to? Twinkle goes to a specialty children's hospital that is located approximately 400 miles from our home. It is an eight hour drive door-to-door. Again, to protect our privacy, I will not name the exact location of this hospital, although I will tell you that it is one of the Shriners Hospitals For Children. (FYI: There are 22 Shriners Hospitals in the U.S. for children.)
How many cats do you have? Two of them, and we love those stinkin' old furballs so much that we can't help it. There are gerbils, too...
How can you let Twinkle suffer? Why don't you get her some pain medicine? Reading this blog, one might presume that Twinks is in inconsolable pain 24/7. The reality is that I write about Twinkles' pain, because it is my own. I carry her pain with me - when she hurts, I hurt. This blog is about parenting a child who is disabled - physically handicapped - "challenged". Whatever you want to call it.
Twinkle has good days, and bad days. When I started this blog (July 2005) she was in and out of her wheelchair. She could walk from the kitchen to the bathroom. She couldn't stand for more than about 15 minutes at a time, or walk for more than about 10 minutes at a time before she had to sit down.
Twinkle has already had so much over-the-counter (think children's Tylenol) pain medicine that she no longer responds to most OTC pain relief products. Because she is at the time of this writing 12 years old, the specialists who treat her, including her Pain Management Team, are hesitant to begin prescribing adult-intended pain medication for her. Finally, Twinkle has many health issues, and takes many prescription drugs for her heart, her asthma, and her immune system. Everyone involved in Twinkles' care (including Twinkle) have decided that for the moment, she is better off not using a pain medication that will possibly cause other side effects.
As of this update (July 2008) Twinkle is successfully being treated for Fibromyalgia, and is responding as well as can be expected. Her pain levels have dropped dramatically, and we (her Daddy/The Wrench) and I are hopeful that between treating the FMS and following the recommendations of her (many) specialists, we can help Twinkle live as normally as anyone possibly can.
What about your Mom? Well, her medical condition is essentially considered to be terminal. And as difficult as that is to write, the reality is that there is nothing to be done. Regardless of what the doctors do or try, she continues to have "micro-strokes" on a regular basis; we simply remain grateful for each day we have with her.
I am the Great and Powerful Oz... as long as I can stay behind this damn curtain...
Answers you didn't even know you wanted, to questions that you didn't even know existed...
Who are you? I am a the mother of a child who was born with many medical problems. I am also the daughter of a mother who has many medical problems, and now lives with us. I have chosen to use pseudonyms here to protect our family's privacy.
What does "creeping towards normal" mean? It means what it says. We (our little family) are creeping towards normal all the time. Every now and again we actually get to reach out and touch it!
Is it Twinkle? Or The Twinkie? Or Twinks? How many kids are there? Just one. Her nickname started out as Twinkle, however our friend Art Lad "renamed" Twinkle as The Twinkie, in honor of one of his favorite snack foods. When she started to blog, The Twinkie chose that as her pen name. Twinks is a deriative/pet name for The Twinkie. You may also see other mutations/iterations such as: Twinkster, LaTwink, Twinkette, TwinkleToes and my new personal favorite, Twinksy-Winksy...
What about your Mom? My Mom is suffering from Multi-Infarct Dementia. She is still beautiful, loving, and sweet, however, she is quite literally losing her mind...
And who is The Wrench? He's my husband of more than 20 years. He's also my rock, my hero, my boyfriend, my lover, my best friend. Sometimes I abbreviate him as "TW".
What company does The Wrench work for? Sorry. That's classified information. As you will gather through a close reading of this blog, he is a certified wrench (a mechanic) in the aviation industry. Like Our Friend Chuck, The Wrench works for a Really Large Airline (although not the same RLA as Our Friend Chuck)
What company do you work for? Sorry. That's classified information also. I "retired" before Twinkle was born, and do only the occasional odd consulting job nowadays.
Why are you writing this? Because I believe that there are other quietly desperate mothers and fathers out there. Sometimes in the middle of the night it is comforting just to know that you are not alone.
What all is wrong with your kid? :::taking a deep breath::: Here's the short list, of the major health issues that Twinks has been diagnosed with:
- Asthma
- Arrhythmia/PVC's (Premature Ventricular Contractions)
- Bilateral Tibial Torsion
- Bilateral Femal Antiversion
- Bilateral TEV Deformity (Clubfoot)
- Leg length discrepancy
- FMS (Fibromyalgia)
- Scoliosis
Why did it take you so long to start a blog? Ha! If you only knew... There is great irony in the fact that I am probably the last person in America to jump on the blogging bandwagon (and, my personal prediction is that since I have now done so, tomorrow morning something better than blogging will come along, and I'll have to procrastinate on that) Actually, there are more reasons than I have time to post, and you have time to read. I finally settled on Blogger one night, and jumped in with both feet.
Where do you live? In the suburbs, just outside a major metropolitan area, somewhere in the middle 9/10ths of the country.
Where is The Hospital that Twinkle goes to? Twinkle goes to a specialty children's hospital that is located approximately 400 miles from our home. It is an eight hour drive door-to-door. Again, to protect our privacy, I will not name the exact location of this hospital, although I will tell you that it is one of the Shriners Hospitals For Children. (FYI: There are 22 Shriners Hospitals in the U.S. for children.)
How many cats do you have? Two of them, and we love those stinkin' old furballs so much that we can't help it. There are gerbils, too...
How can you let Twinkle suffer? Why don't you get her some pain medicine? Reading this blog, one might presume that Twinks is in inconsolable pain 24/7. The reality is that I write about Twinkles' pain, because it is my own. I carry her pain with me - when she hurts, I hurt. This blog is about parenting a child who is disabled - physically handicapped - "challenged". Whatever you want to call it.
Twinkle has good days, and bad days. When I started this blog (July 2005) she was in and out of her wheelchair. She could walk from the kitchen to the bathroom. She couldn't stand for more than about 15 minutes at a time, or walk for more than about 10 minutes at a time before she had to sit down.
Twinkle has already had so much over-the-counter (think children's Tylenol) pain medicine that she no longer responds to most OTC pain relief products. Because she is at the time of this writing 12 years old, the specialists who treat her, including her Pain Management Team, are hesitant to begin prescribing adult-intended pain medication for her. Finally, Twinkle has many health issues, and takes many prescription drugs for her heart, her asthma, and her immune system. Everyone involved in Twinkles' care (including Twinkle) have decided that for the moment, she is better off not using a pain medication that will possibly cause other side effects.
As of this update (July 2008) Twinkle is successfully being treated for Fibromyalgia, and is responding as well as can be expected. Her pain levels have dropped dramatically, and we (her Daddy/The Wrench) and I are hopeful that between treating the FMS and following the recommendations of her (many) specialists, we can help Twinkle live as normally as anyone possibly can.
What about your Mom? Well, her medical condition is essentially considered to be terminal. And as difficult as that is to write, the reality is that there is nothing to be done. Regardless of what the doctors do or try, she continues to have "micro-strokes" on a regular basis; we simply remain grateful for each day we have with her.
I am the Great and Powerful Oz... as long as I can stay behind this damn curtain...
Sunday, July 17, 2005
Twinkle tries to "sleepover"
"Please, Mom, I HAVE to go, because everyone will be there!"
I knew this was coming, and I failed to prepare. Bottom line: I should have been ready. I should have known that when Twink joined the Organization For Girls (hereinafter referred to as the OFG) that this would happen. There was certainly no lack of warning - the cheerful informational brochure that The Head Mommy gave me even talked about fun activities such as "sleepovers, dances, and fund-raisers".
So, it came to pass that on a lovely Saturday (Yes, just yesterday, for those of you keeping track) Twinkle reminded The Wrench and I that our local chapter of the OFG was having a sleepover at The Head Mommy's house. And she HAD to go. My day was instantly shot. I broke out in a cold sweat. I became nauseated. I trembled on the brink of tears and insanity. I just love 'Tween drama, because it brightens any day, and leaves you feeling wrung out and haggard. Do they still make Geritol? I think I might need some.
This sleepover is SPECIAL; all the moms are sleeping over too, and it's a huge "girls only" party. So, you would think that this would be a no-brainer, right? Wrong. Twinkle has some pretty serious medical issues, and one of them is a real doozy. She doesn't just sleep walk, she has night terrors. Screaming, horrible, moaning, groaning, talking-in-her-sleep-for-hours-on-end night terrors. And she wants so badly to do the sleepover thing. Oh, and by the way, she also wants to leave her wheelchair out in the van. She wants to sleep on the floor with the other girls, and not have that damnable wheelchair anywhere in the house. Because, tonight she is going to be NORMAL.
Did we not just have this whole wheelchair discussion last night? After the Harry Potter Book Six incident? Hello?
Backstory: The first sleepover invitation came in the 2nd grade. We let her try it, and she made it to 10 p.m. Fine, we thought - maybe we can ramp up to this, and after a few more tries, she will be able to join in all of the wholesome sleepover fun that girls all over the U.S.A. enjoy. So, we tried again. And, again. Ad nauseum. And the calls would come; frantic late-night calls from the parents that we had tried to warn. Daddy or Mommy would have stagger out into the darkness, and return home with her crying in the back seat, always to the refrain of "I just want to be like the other girls, I just want to be NORMAL!".
Saturday night, we didn't even make it to pajama time. Twinkle's insistence on leaving the wheelchair out in the van took it's toll quickly, and well before midnight we were waving goodbye to the OFG sleepover, and heading home. Her pain was so bad that even two chapters of Book Six weren't enough to distract her. She finally drifted off into a fitful sleep somewhere around 3:00 am.
And Daddy and Mommy are still trying to recover.
I knew this was coming, and I failed to prepare. Bottom line: I should have been ready. I should have known that when Twink joined the Organization For Girls (hereinafter referred to as the OFG) that this would happen. There was certainly no lack of warning - the cheerful informational brochure that The Head Mommy gave me even talked about fun activities such as "sleepovers, dances, and fund-raisers".
So, it came to pass that on a lovely Saturday (Yes, just yesterday, for those of you keeping track) Twinkle reminded The Wrench and I that our local chapter of the OFG was having a sleepover at The Head Mommy's house. And she HAD to go. My day was instantly shot. I broke out in a cold sweat. I became nauseated. I trembled on the brink of tears and insanity. I just love 'Tween drama, because it brightens any day, and leaves you feeling wrung out and haggard. Do they still make Geritol? I think I might need some.
This sleepover is SPECIAL; all the moms are sleeping over too, and it's a huge "girls only" party. So, you would think that this would be a no-brainer, right? Wrong. Twinkle has some pretty serious medical issues, and one of them is a real doozy. She doesn't just sleep walk, she has night terrors. Screaming, horrible, moaning, groaning, talking-in-her-sleep-for-hours-on-end night terrors. And she wants so badly to do the sleepover thing. Oh, and by the way, she also wants to leave her wheelchair out in the van. She wants to sleep on the floor with the other girls, and not have that damnable wheelchair anywhere in the house. Because, tonight she is going to be NORMAL.
Did we not just have this whole wheelchair discussion last night? After the Harry Potter Book Six incident? Hello?
Backstory: The first sleepover invitation came in the 2nd grade. We let her try it, and she made it to 10 p.m. Fine, we thought - maybe we can ramp up to this, and after a few more tries, she will be able to join in all of the wholesome sleepover fun that girls all over the U.S.A. enjoy. So, we tried again. And, again. Ad nauseum. And the calls would come; frantic late-night calls from the parents that we had tried to warn. Daddy or Mommy would have stagger out into the darkness, and return home with her crying in the back seat, always to the refrain of "I just want to be like the other girls, I just want to be NORMAL!".
Saturday night, we didn't even make it to pajama time. Twinkle's insistence on leaving the wheelchair out in the van took it's toll quickly, and well before midnight we were waving goodbye to the OFG sleepover, and heading home. Her pain was so bad that even two chapters of Book Six weren't enough to distract her. She finally drifted off into a fitful sleep somewhere around 3:00 am.
And Daddy and Mommy are still trying to recover.
Saturday, July 16, 2005
Twinkle stands for Harry Potter
Friday night, Twink decides that we absolutely must go and get the new book. Book Six. Never mind the fact that we will have to line up with somewhere around a gazillion other people to get a book that we could stroll into the store on Saturday and pick up. Nope, we have to go out at dark o'clock, in full Hermione regalia, no less.
The Wrench is too tired to go. He has been working out in the July heat, second shift, and even with all of the cold water and ice machines out on the hanger floor, it isn't enough on days like Friday. So he waves us off, with a reminder to bring home something to snack on while we read the first chapter together. He settles into the Internet to read his email and surf eBay, while the Twinkster and I head off for Big Harry Potter Fun.
Upon arriving at The Store, we realize quickly that there are fewer people here than there were for the last book. There were so few that we thought for a moment that we had the wrong day. Twinkle decides right there and then that she is going to STAND in line for Book Six. After all, the mere mortals who failed to don an authentic costume will not be able to bask in the full glory of her Hermoine-ness if she is seated in her wheelchair. She also points out that the handicapped space where I parked the van is mere *steps* from The Store's entrance, and so it's no biggie deal, Mom. We can just run out and grab the chair if we need it.
I know better. I should have never let her talk me into it, but I did. Twinkle floated into The Store, all wavy-haired, sparkly-eyed, with her black robes fluttering in the night breeze. She got several positive comments on her appearance, and she was simply glowing with the fun of it all.
It lasted for all of twelve minutes.
When the pain finally broke through the excitement, she couldn't stand any more. I was left with the choice of either making her walk back to the van to get the chair, (which meant losing our place in line, not to mention an agonizing walk for her) or with leaving her on the floor, in a sea of strangers.
Neither option was appealing to me. So, we waited it out together, and we made a game out of sitting on the floor, scooting our way up to the register, and then I carried her, and The Book all the way to the van.
All the way home, she cried, and apologized. For everything. For being too stubborn to take her chair. For being so much in love with Harry Potter that she couldn't wait until Saturday morning to go to The Store. For being born "wrong".
I said all the mommy-things that I was supposed to say. That we both learned a lesson about standing in long lines. That daddy and I were glad that she loved to read so much that she couldn't wait for her books, and that we were especially glad that she loved to read them aloud with us, and to us. And that she wasn't born wrong - she was different, to be sure, but not wrong.
And because it was dark, she didn't see my tears.
The Wrench is too tired to go. He has been working out in the July heat, second shift, and even with all of the cold water and ice machines out on the hanger floor, it isn't enough on days like Friday. So he waves us off, with a reminder to bring home something to snack on while we read the first chapter together. He settles into the Internet to read his email and surf eBay, while the Twinkster and I head off for Big Harry Potter Fun.
Upon arriving at The Store, we realize quickly that there are fewer people here than there were for the last book. There were so few that we thought for a moment that we had the wrong day. Twinkle decides right there and then that she is going to STAND in line for Book Six. After all, the mere mortals who failed to don an authentic costume will not be able to bask in the full glory of her Hermoine-ness if she is seated in her wheelchair. She also points out that the handicapped space where I parked the van is mere *steps* from The Store's entrance, and so it's no biggie deal, Mom. We can just run out and grab the chair if we need it.
I know better. I should have never let her talk me into it, but I did. Twinkle floated into The Store, all wavy-haired, sparkly-eyed, with her black robes fluttering in the night breeze. She got several positive comments on her appearance, and she was simply glowing with the fun of it all.
It lasted for all of twelve minutes.
When the pain finally broke through the excitement, she couldn't stand any more. I was left with the choice of either making her walk back to the van to get the chair, (which meant losing our place in line, not to mention an agonizing walk for her) or with leaving her on the floor, in a sea of strangers.
Neither option was appealing to me. So, we waited it out together, and we made a game out of sitting on the floor, scooting our way up to the register, and then I carried her, and The Book all the way to the van.
All the way home, she cried, and apologized. For everything. For being too stubborn to take her chair. For being so much in love with Harry Potter that she couldn't wait until Saturday morning to go to The Store. For being born "wrong".
I said all the mommy-things that I was supposed to say. That we both learned a lesson about standing in long lines. That daddy and I were glad that she loved to read so much that she couldn't wait for her books, and that we were especially glad that she loved to read them aloud with us, and to us. And that she wasn't born wrong - she was different, to be sure, but not wrong.
And because it was dark, she didn't see my tears.
Friday, July 15, 2005
two steps forward...
...three steps back. At least, that's what it feels like. The pain is almost more than I can bear, and it isn't even mine.
The price we pay as parents is the loss of a certain sense of control. Before Twinkle was born, we were nearly invincible. My father's death from cancer four years before was a hard blow for our entire circle of family and friends, but we had continued to put one foot in front of the other, and we made it. Before Twinkle, we still had some of that teenage invincibility left in us. That feeling that we might not be bulletproof, but we were *tough*. We could cover anything together, as a couple.
Then, one sunny Saturday afternoon, The Wrench & I left our old world at home, and took off for the hospital. When we drove home on Monday, there were three of us, but it wasn't the celebration we had envisioned. Twinkle was born with a lot of problems; during the required "baby class" at the hospital, the other parents were clearly shocked to see her when we gave our babies their first baths.
Along the way, things have been tough at times. Somehow, some way, we keep putting one foot in front of the other, and our little family of three just keeps on going, and going, and going...
But we live outside "normal". Normal is a place we can visit, but it seems we never get to stay for long. Normal is what we wish for, what we long for, what we try to project. Normal is what Twinkle will never be.
Twinkle is smart - incredibly, magically, wonderfully intelligent. Since Kindergarden, she has consistently been a straight A student - she learns effortlessly, and well before fifth grade she was reading at a college level. She is creative, and funny, and loving - oh so loving - with a tender heart. She loves to read, adores the Harry Potter books & movies, is an avid Radio Disney fan, and as she trembles on the threshold of teendom, she has begun to ask those Questions For Which We Have No Answers. The days that we dreaded since her birth have arrived: She wants to know *why* it happened to her. Why her? Why anyone?
Our answers are pitiful at best. They do nothing to assuage the pain, or to lessen the impending horror of spending Junior High in a wheelchair. They can't hide the braces, don't cover the scars from surgery, won't make her graceful and light on her feet.
They don't comfort us much either.
Sometimes being a parent just sucks.
The price we pay as parents is the loss of a certain sense of control. Before Twinkle was born, we were nearly invincible. My father's death from cancer four years before was a hard blow for our entire circle of family and friends, but we had continued to put one foot in front of the other, and we made it. Before Twinkle, we still had some of that teenage invincibility left in us. That feeling that we might not be bulletproof, but we were *tough*. We could cover anything together, as a couple.
Then, one sunny Saturday afternoon, The Wrench & I left our old world at home, and took off for the hospital. When we drove home on Monday, there were three of us, but it wasn't the celebration we had envisioned. Twinkle was born with a lot of problems; during the required "baby class" at the hospital, the other parents were clearly shocked to see her when we gave our babies their first baths.
Along the way, things have been tough at times. Somehow, some way, we keep putting one foot in front of the other, and our little family of three just keeps on going, and going, and going...
But we live outside "normal". Normal is a place we can visit, but it seems we never get to stay for long. Normal is what we wish for, what we long for, what we try to project. Normal is what Twinkle will never be.
Twinkle is smart - incredibly, magically, wonderfully intelligent. Since Kindergarden, she has consistently been a straight A student - she learns effortlessly, and well before fifth grade she was reading at a college level. She is creative, and funny, and loving - oh so loving - with a tender heart. She loves to read, adores the Harry Potter books & movies, is an avid Radio Disney fan, and as she trembles on the threshold of teendom, she has begun to ask those Questions For Which We Have No Answers. The days that we dreaded since her birth have arrived: She wants to know *why* it happened to her. Why her? Why anyone?
Our answers are pitiful at best. They do nothing to assuage the pain, or to lessen the impending horror of spending Junior High in a wheelchair. They can't hide the braces, don't cover the scars from surgery, won't make her graceful and light on her feet.
They don't comfort us much either.
Sometimes being a parent just sucks.
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