This Friday Five was conceived by Sally, who says: It has been a difficult week here in Dowham Market, and yet in the sadness there have been signs of real hope, young people, often criticised have shown us how caring and amazing they are. It has also been a strange week; it snowed for almost the first time this winter, and yet many of the spring bulbs are blooming, and the trees are blossoming!I believe that if we look carefully we can see signs of hope all around us.... as for signs of spring... well you tell me....Bluebells in my garden, before the snow!
What have you seen/ heard this week that was a :
1. Sign of hope?
I must not be very perceptive. Either that or my memory is particularly dull. There were a couple of bright sunny days that made me feel that spring approaches.
2. An unexpected word of light in a dark place?
Again, I think my memory is shot. I did hear something encouraging, not for me personally, but for a coworker whose husband has lymphoma of the brain. The latest MRI was clear. That was really happy news.
3. A sign of spring?
A few warm, sunny days with brilliant blue skies and puffy clouds. The days are getting longer, which gives me a boost on the way home.
4. Challenging/ surprising?
I am abnormally fatigued this week, enough to make a doctor appointment. My mind has wandered off into the world of possible ailments: Perimenopause? Cancer? Hypothyroid? Anemia? I have this dread that one more stone is going to be added to the heap of medical challenges we face.
5. Share a hope for the coming week/month/year....
Week: I have an excisional biopsy to get through, and I want it to be completely unproblematic. Month: We have to pay a number of medical bills to meet the insurance requirements for out of pocket expenses, so I hope we can deal with that this month. Year: I would like to buy a house, but it seems so far off financially. I want Dear Husband to find his career path.
Bonus play... a piece of music/ poem guaranteed to cheer you?
See my post below about Solsbury Hill, by Peter Gabriel. It never fails to make me feel hopeful.
Friday, March 07, 2008
Wednesday, March 05, 2008
Life's Soundtrack
When illusion spin a net
I’m never where I want to be
And liberty she pirouette
When I think that I am free
In the series of books I’ve been reading, the Twilight Series by Stephenie Meyer, the author posts a playlist she listened to while writing the book, its “soundtrack.” What would the soundtrack to your life be? Would you play music contemporary with each stage of life? Or something thematically applicable? Instrumental, classical, alternative, pop, jazz, rock?
There are songs that can transfix you. Every element--your environment, your thoughts, the landscape before you, the lyrics, the music, your emotions, your longings—snap into place seamlessly. I suppose these moments are what James Joyce referred to as epiphanies. Life suddenly reveals a deeper meaning, but not one you feel like putting into words. A meaning that doesn’t explain anything or answer any questions.
My parents never turned on the radio when I was growing up, and they never listened to records, either. My mom would sometimes burst into song, but she rarely knew all the lyrics and would trail into humming. I was born in 1966, and there was quite a bit of interesting music, but I rarely heard it. The local radio stations weren’t very current, either. When I was five or six, I was sitting in the front seat of my dad’s car (in the days before airbags and booster seats), and he had the radio on. A song unlike anything I had heard before came on. I thought it was beautiful. The song was Light My Fire by the Doors. I didn’t start begging for an album—I wouldn’t have known there was such a thing to beg for—but I still remember that first encounter with music that made me feel excited and exuberant and different from my normal self.
My musical taste in the 70s was an embarrassment. I wouldn’t listen to any of that stuff now. I even had a Shaun Cassidy record. Sheesh. I didn’t have passionate feelings about music, and I thought most of the bands looked unwashed and unkempt, and not in a cool way, and the lyrics would cut out so you could hear endless guitar solos. I mean, Lynard Skynard seemed to be the soundtrack of Albany GA. I got so sick of hearing Free Bird.
On one trip, our car broke down in Dade County, Alabama. Some local law enforcement fellows had mercy on us and brought us in to the sheriff’s office to make arrangements. It was getting very late. My dad called one of my brothers to come get us, but he lived some distance away. So we waited and the sheriff talked to my parents. I had never seen anything quite as unsettling as that sheriff. He was portly, and he talked a lot about his big house with a fountain. He wore large gold rings on his fingers. As inexperienced as I was with the world, I was very uncomfortable and glad to get the heck out of there when my brother arrived. It was very late at that point, and I lay down in the back seat to sleep. As I was drifting off, Hotel California came on the radio. I had never heard it before. I ever after associated it with that ride through the dark, away from the probably corrupt sheriff.
Then came MTV. By the time it hit us, punk was just a memory, a bit of background noise to the New Wave, New Romantic sounds. Oh, man, British music floored me. Where has this been all my life, I wondered? And alternative music—whoa, no more Free Bird, no more KISS, no more AC/DC, hurrah! I chuckle when I hear our local station play retro 80s music. I’m already a has-been. And now the music does sound a bit quaint.
Since then I’ve gone through a jazz phase, a classical and opera phase, and a world music phase. And then I finally discovered the Beatles, the Stones, The Band—all the music I didn’t hear growing up and which I could finally enjoy now that I know longer had to be hip.
And now, I don’t know. I like to pick up the new U2 albums when they come out. I listen happily to samplers from Paste magazine, but I don’t think I’ve purchased a CD in over a year. Every now and then I will hear a new song that startles me. Or I hear an old song that I had forgotten and that still has the power to lift me above my everyday concerns.
The lyrics above are from Solsbury Hill by Peter Gabriel, one of my all-time favorite musicians. I did not hear this song when it first came out, but much much later, after the Shock the Monkey album and So. I don’t remember what was happening the first time I heard it, but from the opening bars, it had me. Something about this song makes me tense up expectantly. Expecting what I’m not sure. It’s liberating and joyful, looking out over life’s possibilities.
I’m never where I want to be
And liberty she pirouette
When I think that I am free
In the series of books I’ve been reading, the Twilight Series by Stephenie Meyer, the author posts a playlist she listened to while writing the book, its “soundtrack.” What would the soundtrack to your life be? Would you play music contemporary with each stage of life? Or something thematically applicable? Instrumental, classical, alternative, pop, jazz, rock?
There are songs that can transfix you. Every element--your environment, your thoughts, the landscape before you, the lyrics, the music, your emotions, your longings—snap into place seamlessly. I suppose these moments are what James Joyce referred to as epiphanies. Life suddenly reveals a deeper meaning, but not one you feel like putting into words. A meaning that doesn’t explain anything or answer any questions.
My parents never turned on the radio when I was growing up, and they never listened to records, either. My mom would sometimes burst into song, but she rarely knew all the lyrics and would trail into humming. I was born in 1966, and there was quite a bit of interesting music, but I rarely heard it. The local radio stations weren’t very current, either. When I was five or six, I was sitting in the front seat of my dad’s car (in the days before airbags and booster seats), and he had the radio on. A song unlike anything I had heard before came on. I thought it was beautiful. The song was Light My Fire by the Doors. I didn’t start begging for an album—I wouldn’t have known there was such a thing to beg for—but I still remember that first encounter with music that made me feel excited and exuberant and different from my normal self.
My musical taste in the 70s was an embarrassment. I wouldn’t listen to any of that stuff now. I even had a Shaun Cassidy record. Sheesh. I didn’t have passionate feelings about music, and I thought most of the bands looked unwashed and unkempt, and not in a cool way, and the lyrics would cut out so you could hear endless guitar solos. I mean, Lynard Skynard seemed to be the soundtrack of Albany GA. I got so sick of hearing Free Bird.
On one trip, our car broke down in Dade County, Alabama. Some local law enforcement fellows had mercy on us and brought us in to the sheriff’s office to make arrangements. It was getting very late. My dad called one of my brothers to come get us, but he lived some distance away. So we waited and the sheriff talked to my parents. I had never seen anything quite as unsettling as that sheriff. He was portly, and he talked a lot about his big house with a fountain. He wore large gold rings on his fingers. As inexperienced as I was with the world, I was very uncomfortable and glad to get the heck out of there when my brother arrived. It was very late at that point, and I lay down in the back seat to sleep. As I was drifting off, Hotel California came on the radio. I had never heard it before. I ever after associated it with that ride through the dark, away from the probably corrupt sheriff.
Then came MTV. By the time it hit us, punk was just a memory, a bit of background noise to the New Wave, New Romantic sounds. Oh, man, British music floored me. Where has this been all my life, I wondered? And alternative music—whoa, no more Free Bird, no more KISS, no more AC/DC, hurrah! I chuckle when I hear our local station play retro 80s music. I’m already a has-been. And now the music does sound a bit quaint.
Since then I’ve gone through a jazz phase, a classical and opera phase, and a world music phase. And then I finally discovered the Beatles, the Stones, The Band—all the music I didn’t hear growing up and which I could finally enjoy now that I know longer had to be hip.
And now, I don’t know. I like to pick up the new U2 albums when they come out. I listen happily to samplers from Paste magazine, but I don’t think I’ve purchased a CD in over a year. Every now and then I will hear a new song that startles me. Or I hear an old song that I had forgotten and that still has the power to lift me above my everyday concerns.
The lyrics above are from Solsbury Hill by Peter Gabriel, one of my all-time favorite musicians. I did not hear this song when it first came out, but much much later, after the Shock the Monkey album and So. I don’t remember what was happening the first time I heard it, but from the opening bars, it had me. Something about this song makes me tense up expectantly. Expecting what I’m not sure. It’s liberating and joyful, looking out over life’s possibilities.
Friday, February 29, 2008
DramaQueen surprises me yet again
In an attempt to de-heathenize my offspring, I have been reading through a series of scripture passages for Lent. I grew up Southern Baptist, and Lent was one of the oddities we heard of only in connection with lessons about why Catholics got it wrong. Anyway, I’ve been reading these passages and meeting no resistance whatsoever, which has floored me. I mean, it hasn’t stopped Firecracker from reading Chicka Chicka Boom Boom—she’s only interested in counting right now--but DramaQueen has been quite attentive, even asking a few questions. At one point she asked me if I liked reading the Bible, and I said that I did except for the parts with long lists of names. Her eyes lit up, “Lists? I love lists! Show me.” So for the past few nights she has been going over the genealogy in the opening of Matthew. She loves the odd names. She also started reading the Psalms, after I read one to her. I haven’t dared to comment in any way. For some reason a parent’s enthusiasm can completely stifle a child’s interest. I don’t know why, but it was true for me as a child, too. When parents get excited, expectations follow, and the burden is just too tiring.
I find it interesting that the parts of the Bible that I found most tedious and skipped right over, she seems to relish. Well, I haven’t tried her on Chronicles yet. Or Leviticus. I did tell her about some of the purity laws, which, being a typical young person, she pronounced “stupid.’
On another note, she came home from school one day and asked me if I knew about Bloody Mary, because her friend T had seen her in the mirror that morning. Might like to throttle T, who is obviously a little storyteller. I would have liked DramaQueen to skip hearing about that lovely ritual for a few more years. It doesn’t help that I still can’t look into a mirror in the dark because of that stupid story.
To figure out why the Bloody Mary story persists among young girls, I did some research and found an article about Bloody Mary as a ritual for pre-menarche girls: bathrooms, darkness, blood. Some variations of the ritual include flushing toilets, which I had not heard of before. An interesting, theory, I think. Of course there’s also the aspect of divination, which was probably associated with women anyway. None of this rational explanation will make it any easier for me to look in a mirror in the dark. A mirror seems too much like a portal. I don’t know why I’m so susceptible to this stuff.
I find it interesting that the parts of the Bible that I found most tedious and skipped right over, she seems to relish. Well, I haven’t tried her on Chronicles yet. Or Leviticus. I did tell her about some of the purity laws, which, being a typical young person, she pronounced “stupid.’
On another note, she came home from school one day and asked me if I knew about Bloody Mary, because her friend T had seen her in the mirror that morning. Might like to throttle T, who is obviously a little storyteller. I would have liked DramaQueen to skip hearing about that lovely ritual for a few more years. It doesn’t help that I still can’t look into a mirror in the dark because of that stupid story.
To figure out why the Bloody Mary story persists among young girls, I did some research and found an article about Bloody Mary as a ritual for pre-menarche girls: bathrooms, darkness, blood. Some variations of the ritual include flushing toilets, which I had not heard of before. An interesting, theory, I think. Of course there’s also the aspect of divination, which was probably associated with women anyway. None of this rational explanation will make it any easier for me to look in a mirror in the dark. A mirror seems too much like a portal. I don’t know why I’m so susceptible to this stuff.
Friday, February 22, 2008
Friday Five -- Heaven
This week's RevGal Friday Five is about Heaven--what do we find heavenly, perfect, etc.
1. Family get-together
The perfect family get-together would include my mom, who died in 2001. I would love for her to see how DramaQueen has grown, and meet Firecracker, whose birth she missed; and I would like them to meet her, to be able to hear her voice and sit in her lap. All my brothers would be there as well. They are all musical, and it is always so much fun to hear them play together. My dad would have brought in a load of vegetables from his garden for mom to cook, and even though I never particularly liked her cooking, it would be a joy to eat it.
2. Song or musical piece
Dead Can Dance make music that stirs in me a feeling of transcendence and eternity. There is usually an edge of melancholy. Why does melancholy seem to open the doors to the eternal?
3. Gift
Books. Always books. I hope the afterlife has a library. With a café.
4. You choose whatever you like-food, pair of shoes, vacation, house, or something else. Just tell us what it is and what a heavenly version of it would be.
Oh, yes, the heavenly version of chocolate would have no calories. We could eat simply for the sensual pleasure of taste and texture and variety, without worrying about sustenance and health. The vegetables will actually taste like something—no more cottony tomatoes or enormous flavorless cucumbers. Hmm, heaven will have a version of my dad’s garden.
5. And for a serious moment, or what would you like your entrance into the next life to be like?
Swift. No pain or suffering, of course. I would not like to experience what my mom did, dying of leukemia after a harsh round of chemo. I want to be old, I want to be at home, and I want to drift to sleep, and wake up happy.
What, from your vantage point now, would make Heaven "heavenly?"
I want heaven to be like earth as God meant it to be. I want there to be books, conversations, nature walks, music, art, dancing.
1. Family get-together
The perfect family get-together would include my mom, who died in 2001. I would love for her to see how DramaQueen has grown, and meet Firecracker, whose birth she missed; and I would like them to meet her, to be able to hear her voice and sit in her lap. All my brothers would be there as well. They are all musical, and it is always so much fun to hear them play together. My dad would have brought in a load of vegetables from his garden for mom to cook, and even though I never particularly liked her cooking, it would be a joy to eat it.
2. Song or musical piece
Dead Can Dance make music that stirs in me a feeling of transcendence and eternity. There is usually an edge of melancholy. Why does melancholy seem to open the doors to the eternal?
3. Gift
Books. Always books. I hope the afterlife has a library. With a café.
4. You choose whatever you like-food, pair of shoes, vacation, house, or something else. Just tell us what it is and what a heavenly version of it would be.
Oh, yes, the heavenly version of chocolate would have no calories. We could eat simply for the sensual pleasure of taste and texture and variety, without worrying about sustenance and health. The vegetables will actually taste like something—no more cottony tomatoes or enormous flavorless cucumbers. Hmm, heaven will have a version of my dad’s garden.
5. And for a serious moment, or what would you like your entrance into the next life to be like?
Swift. No pain or suffering, of course. I would not like to experience what my mom did, dying of leukemia after a harsh round of chemo. I want to be old, I want to be at home, and I want to drift to sleep, and wake up happy.
What, from your vantage point now, would make Heaven "heavenly?"
I want heaven to be like earth as God meant it to be. I want there to be books, conversations, nature walks, music, art, dancing.
Wednesday, February 20, 2008
Life bites; if only I could bite back
As usual, when life gets stressful, I take refuge in books. Right now I’m reading the Twilight saga by Stephenie Meyer. I love books about vampires. I was really into the Ann Rice novels—such elegant vampires with such poetic and philosophical musings, not to mention an eroticism that was creepy and compelling. In the end vampire stories all seem to be about sex dressed up in gothic clothes with nowhere to go.
The Twilight series is about a teenage girl, Bella, and a vampire boy, Edward, who fall desperately in love. And I do mean desperately—teen love ramped up and kicked into overdrive. Then the novel piles on the complications, misunderstandings, danger and conflict. It’s all very Wuthering Heights, although Catherine would think Bella a wimp, and I always thought Catherine and Heathcliff were so immensely unpleasant that I grew impatient with the sturm and drang.. The books refer to both Wuthering Heights and Romeo and Juliet a lot, which is apt, since Bella and Edward think their lives will end without each other, which they demonstrate with much dramatic hullaballoo. Really, this is fabulous. I love this kind of stuff, even if Bella is a spineless masochist and Edward is unrelentingly gorgeous, annoyingly noble. They can’t do much in the way of physical contact, since his kiss could kill her. Talk about repression. Bella does a lot of swooning and Edward seems to be in a constant state of anguish trying to keep from loving her to death. Interesting, huh? He loves her so much his impulse is to kill her. Of course he doesn’t want to—it’s his biology he’s resisting. Well, I wouldn’t look too closely at the male/female dynamics here—it spoils the fun and critics are so tiresome when they start berating books for not being feminist enough. (I read one such criticism and wondered if the reviewer thought it would be best not to read Dickens because his female characters are ridiculous. But I could go into a long diatribe about those who think we should read only what’s proper and healthy for us in order to maintain a good literary hygiene.) There’s a werewolf vying for her affections as well. Talk about a tumultuous romantic life. As I said, vampire novels seem to be about desire that is never satisfied, which doesn’t really want to be satisfied because the tension of not being satisfied is so intoxicating.
There are other vampires out to get Bella, so you’d think Edward would just turn her into one to protect her, but he refuses. Why? Well, because if he didn’t there wouldn’t be a story, now would there? The moment they’re on an equal footing, the plot will have to find a new focus. Oh, and the werewolf is bound by pack law to kill any vampire who bites a human, so it looks like we’ve got a damned if you do damned if you don’t situation (ha ha). I have one more book of tortured indecision before the grand finale (coming out in August), and I think I’m 39th on the waiting list at our library. Edward, for pete’s sake turn her into a vampire already and hightail it out of werewolf territory. After a while a tortured conscience just gets boring. Bella, you’re going to have to decide between the vampire and the werewolf and just deal with it. If you want to be a vampire so badly, get one of the others to change you. Sheesh. It’s not like Edward is the only vampire in town.
The Twilight series is about a teenage girl, Bella, and a vampire boy, Edward, who fall desperately in love. And I do mean desperately—teen love ramped up and kicked into overdrive. Then the novel piles on the complications, misunderstandings, danger and conflict. It’s all very Wuthering Heights, although Catherine would think Bella a wimp, and I always thought Catherine and Heathcliff were so immensely unpleasant that I grew impatient with the sturm and drang.. The books refer to both Wuthering Heights and Romeo and Juliet a lot, which is apt, since Bella and Edward think their lives will end without each other, which they demonstrate with much dramatic hullaballoo. Really, this is fabulous. I love this kind of stuff, even if Bella is a spineless masochist and Edward is unrelentingly gorgeous, annoyingly noble. They can’t do much in the way of physical contact, since his kiss could kill her. Talk about repression. Bella does a lot of swooning and Edward seems to be in a constant state of anguish trying to keep from loving her to death. Interesting, huh? He loves her so much his impulse is to kill her. Of course he doesn’t want to—it’s his biology he’s resisting. Well, I wouldn’t look too closely at the male/female dynamics here—it spoils the fun and critics are so tiresome when they start berating books for not being feminist enough. (I read one such criticism and wondered if the reviewer thought it would be best not to read Dickens because his female characters are ridiculous. But I could go into a long diatribe about those who think we should read only what’s proper and healthy for us in order to maintain a good literary hygiene.) There’s a werewolf vying for her affections as well. Talk about a tumultuous romantic life. As I said, vampire novels seem to be about desire that is never satisfied, which doesn’t really want to be satisfied because the tension of not being satisfied is so intoxicating.
There are other vampires out to get Bella, so you’d think Edward would just turn her into one to protect her, but he refuses. Why? Well, because if he didn’t there wouldn’t be a story, now would there? The moment they’re on an equal footing, the plot will have to find a new focus. Oh, and the werewolf is bound by pack law to kill any vampire who bites a human, so it looks like we’ve got a damned if you do damned if you don’t situation (ha ha). I have one more book of tortured indecision before the grand finale (coming out in August), and I think I’m 39th on the waiting list at our library. Edward, for pete’s sake turn her into a vampire already and hightail it out of werewolf territory. After a while a tortured conscience just gets boring. Bella, you’re going to have to decide between the vampire and the werewolf and just deal with it. If you want to be a vampire so badly, get one of the others to change you. Sheesh. It’s not like Edward is the only vampire in town.
Sunday, February 17, 2008
Home Again
The moment we got home yesterday, Firecracker was knocking on our neighbor's door, eager to see her playmates. Except for the head full of staples, you would never know doctors had been messing around in her brain. She should be able to go back to school this week, with instructions to keep other kids from touching the incisions. The hospital gave us a set of staple removers, which we are to take with us to the follow up appointment. They look rather scary, and given how many staples I see, I'm a bit nervous about that appointment.
Friday, February 15, 2008
I can't wait to get home.
Yesterday afternoon they disconnected Firecracker from all the brain wiring. All that's left is to remove the connections from the brain. I could tell how relieved she was to feel a little bit more free. I hope the second surgery will be much easier, with less nausea and pain. She misses DramaQueen and her classmates. Her teachers came to visit. Both the morning and afternoon bus drivers called, and one came to visit. Church members have come with gifts, toys for the girls and time for Dear Husband and me to slip away for fresh air and a bit of normality. Her room is bright with posters that friends/coworkers made for her. All the doctors and nurses and visitors commented on them. MIL has been taking care of our house and DramaQueen. We've had a lot of support far and wide through prayer and gifts. I am thankful for that. I don't know how people cope with something like this on their own.
Yesterday afternoon they disconnected Firecracker from all the brain wiring. All that's left is to remove the connections from the brain. I could tell how relieved she was to feel a little bit more free. I hope the second surgery will be much easier, with less nausea and pain. She misses DramaQueen and her classmates. Her teachers came to visit. Both the morning and afternoon bus drivers called, and one came to visit. Church members have come with gifts, toys for the girls and time for Dear Husband and me to slip away for fresh air and a bit of normality. Her room is bright with posters that friends/coworkers made for her. All the doctors and nurses and visitors commented on them. MIL has been taking care of our house and DramaQueen. We've had a lot of support far and wide through prayer and gifts. I am thankful for that. I don't know how people cope with something like this on their own.
Thursday, February 14, 2008
Now What?
So, in the 20 years that the neurosurgeon has been performing this procedure, he has only had to take out a grid without doing surgery a few times. Now he can add Firecracker to the list. What a ride. So now we have to think of other options. Oddly Abby has still not had another seizure, and now they've started her back on the meds.
Tomorrow they will take out the grids and we'll go home sometime this weekend. It's a disappointing turn of events. And we've missed Valentine's Day.
So, in the 20 years that the neurosurgeon has been performing this procedure, he has only had to take out a grid without doing surgery a few times. Now he can add Firecracker to the list. What a ride. So now we have to think of other options. Oddly Abby has still not had another seizure, and now they've started her back on the meds.
Tomorrow they will take out the grids and we'll go home sometime this weekend. It's a disappointing turn of events. And we've missed Valentine's Day.
Wednesday, February 13, 2008
Aw Crap.
It looks as if they may not be able to go forward with surgery to remove the tuber. The neurologist came in and told me that they fear the seizure focus is too close to the motor area. I didn't get all the ins and outs of this. The neurosurgeon is going to come tomorrow and show us all the charts and explain it in detail. Part of the problem is that Firecracker has had only one seizure since we came in. That's just weird. But that one seizure gave them pause because of the way it spread. They won't remove a tuber if they don't get any return--decrease in seizures. So, here we are. Poor Firecracker is irritated beyond belief by this turban, and she's starting to get a bit restless. Dear Husband is beyond sad. I'm sad, too, although I tend to be resigned to these sorts of setbacks. I'd rather they called it off than damage her motor strip. But we were so hopeful that removing the tuber would help get rid of the seizures and thus give her a boost in development.
But, the neurologist did mention that there are other surgical methods besides resectioning that can be performed. Whether or not the neurosurgeon sees any benefit to any of them remains to be seen.
It looks as if they may not be able to go forward with surgery to remove the tuber. The neurologist came in and told me that they fear the seizure focus is too close to the motor area. I didn't get all the ins and outs of this. The neurosurgeon is going to come tomorrow and show us all the charts and explain it in detail. Part of the problem is that Firecracker has had only one seizure since we came in. That's just weird. But that one seizure gave them pause because of the way it spread. They won't remove a tuber if they don't get any return--decrease in seizures. So, here we are. Poor Firecracker is irritated beyond belief by this turban, and she's starting to get a bit restless. Dear Husband is beyond sad. I'm sad, too, although I tend to be resigned to these sorts of setbacks. I'd rather they called it off than damage her motor strip. But we were so hopeful that removing the tuber would help get rid of the seizures and thus give her a boost in development.
But, the neurologist did mention that there are other surgical methods besides resectioning that can be performed. Whether or not the neurosurgeon sees any benefit to any of them remains to be seen.
Sunday, February 10, 2008
9:44 am Sunday
Firecracker is watching Mickey Mouse and nibbling at her breakfast. She is better today than I've seen her. She spent some time on Cartoon Network playing games. She's complaining of itching and trying to pull at the gauze turban and the fat sheet of wiring that's coming out. The room is decorated by may colorful posters from friends. We must have the brightest room here. And yesterday her nurses brought her a present and a balloon, and some cake and ice cream. That was sooo sweet. A friend from church brought her a valentine webkinz frog, which Firecracker has dubbed "Love." Next door is a family whose little boy is having the same procedure. He's ready to get up and MOVE, poor fellow, but he's stuck in the bed with the video monitor. They brought over a little stuffed rhino for Abby, which was awfully nice. We shared stories of bewilderment and struggles with diagnoses and mis-diagnoses. So many doctors know so little that parents end up having to educate them. Thankfully there are resources for that, but not all doctors are receptive or will take the time to do the reading and calling around to TS clinics and the like.
Dear Husband is bringing me coffee again. Last night the sweetie went out and got me Chinese food. Heaven. Cause the cafeteria food leaves something to be desired. It's not awful, but it has a reconstituted feel about it. The French toast and pancakes are a bit rubbery, and the sandwiches look like something I would put together at home when I'm running out of ingredients. The best thing are the potato chips--they have salt and vinegar and lime with black pepper.
Firecracker is missing her sister. She came by yesterday with a birthday present, bought with her own money. DramaQueen is such a lovely girl (most of the time). She got Firecracker a Batmobil. We certainly aren't hurting for amusements. The little hospital library has a nice bunch of books and videos for kids, and there are a lot of games available. I even found some books for myself. Of course, mostly I'm just tired, collecting various aches and pains. Thankfully a friend brought over an air mattress, which greatly improved my sleep last night. I can't seem to get quite enough, though.
No seizures yet.
Firecracker is watching Mickey Mouse and nibbling at her breakfast. She is better today than I've seen her. She spent some time on Cartoon Network playing games. She's complaining of itching and trying to pull at the gauze turban and the fat sheet of wiring that's coming out. The room is decorated by may colorful posters from friends. We must have the brightest room here. And yesterday her nurses brought her a present and a balloon, and some cake and ice cream. That was sooo sweet. A friend from church brought her a valentine webkinz frog, which Firecracker has dubbed "Love." Next door is a family whose little boy is having the same procedure. He's ready to get up and MOVE, poor fellow, but he's stuck in the bed with the video monitor. They brought over a little stuffed rhino for Abby, which was awfully nice. We shared stories of bewilderment and struggles with diagnoses and mis-diagnoses. So many doctors know so little that parents end up having to educate them. Thankfully there are resources for that, but not all doctors are receptive or will take the time to do the reading and calling around to TS clinics and the like.
Dear Husband is bringing me coffee again. Last night the sweetie went out and got me Chinese food. Heaven. Cause the cafeteria food leaves something to be desired. It's not awful, but it has a reconstituted feel about it. The French toast and pancakes are a bit rubbery, and the sandwiches look like something I would put together at home when I'm running out of ingredients. The best thing are the potato chips--they have salt and vinegar and lime with black pepper.
Firecracker is missing her sister. She came by yesterday with a birthday present, bought with her own money. DramaQueen is such a lovely girl (most of the time). She got Firecracker a Batmobil. We certainly aren't hurting for amusements. The little hospital library has a nice bunch of books and videos for kids, and there are a lot of games available. I even found some books for myself. Of course, mostly I'm just tired, collecting various aches and pains. Thankfully a friend brought over an air mattress, which greatly improved my sleep last night. I can't seem to get quite enough, though.
No seizures yet.
Saturday, February 09, 2008
Oh good grief. Somehow all my posts have gone to Baby Blessingway instead of to my Bad Alice blog. That's because there's a stupid (no doubt precautionary etc etc policy, but it inconveniences me so I'm selfishly cranky) hospital policy that blocks access to all personal networking sites. I'm having to post from Google Docs, and I'm hoping my setting will now stay put. Songbird, thank you for alerting me to this. Let me know if this goes to the wrong place again. I'm afraid I can't remove them from Blessingway until I'm away from the hospital.
Anyway, Firecracker is looking much better but still pretty groggy. No seizures yet. Yeah, we have to hope for seizures so they can get all the info they need. We could get out of here early if that happened. My sleep was just grand. Lights have to stay on for video monitoring, and it seemed like every few minutes an IV alarm would sound. I just pretended to be asleep because I was too tired to move. Firecracker slept through it thanks to morphine. For the most part. She woke up a few times having to go to the bathroom, which means wielding the strangely flimsy plastic bedpan, which seems designed so that your child's bottom can rest in whatever she yields. Everyone keeps fussing over how uncomfortable she looks, because her head keeps flopping down to one side. Well, what can I do about it? She has a mound of gauze and wiring around her head, which pushes it forward. Real comfortable. Now, if they had a memory foam pillow, perhaps it could accommodate this strange gigantic head.
Here come the meds. The challenge is to convince Firecracker that she needs to swallow them.
Anyway, Firecracker is looking much better but still pretty groggy. No seizures yet. Yeah, we have to hope for seizures so they can get all the info they need. We could get out of here early if that happened. My sleep was just grand. Lights have to stay on for video monitoring, and it seemed like every few minutes an IV alarm would sound. I just pretended to be asleep because I was too tired to move. Firecracker slept through it thanks to morphine. For the most part. She woke up a few times having to go to the bathroom, which means wielding the strangely flimsy plastic bedpan, which seems designed so that your child's bottom can rest in whatever she yields. Everyone keeps fussing over how uncomfortable she looks, because her head keeps flopping down to one side. Well, what can I do about it? She has a mound of gauze and wiring around her head, which pushes it forward. Real comfortable. Now, if they had a memory foam pillow, perhaps it could accommodate this strange gigantic head.
Here come the meds. The challenge is to convince Firecracker that she needs to swallow them.
Sunday, February 03, 2008
The Endocrinologist Revisited, or Dear Husband's Day from HELL
Friday was quite an adventure for Dear Husband, who had to take Firecracker to the hospital for presurgery assessment and a visit to the dear old endocrinologist. You can read a full report here.
On a positive note, Firecracker's birthday party was yesterday. A dear friend opened her house for the party, and her husband dressed up as a pirate. We had treasure maps for the kids, and they had set up an obstacle course and a bouncy room in the basement. The treasure hunt was kind of chaotic, and one little girl kept disappearing and once tried to insert herself between the couch and the wall. There was one total meltdown when a little girl called a little boy "baby", and the pirate had to comfort him. One child had a peanut allergy, which I only heard about the morning of the party, so the store-bought cake was off limits, and for some reason the ice cream we provided brought tears to her eyes. I also got to meet the little boy that Firecracker has talked about quite a bit "Today Eric was nice to me," "Today Eric was mean to me," "Eric is my friend," "Eric says he's not my friend" (said with sobs), and even "This Friday Eric is going to be mean to me." Already Eric knows how to string a girl along. You can tell he will grow up to be quite a heartbreaker--dark hair, big eyes, charming smile. A good party altogether. The kids seem to really like each other--every time a new arrival appeared at the door there was general hysteria, as if the latest pop star had appeared.
I never wrote about DramaQueen's party. We took 10 girls to see a local production of High School Musical. And survived. I was worried that we might need some entertainment, games or something during the home portion, but 10 8-year-olds need nothing. One wise little girl told me that she knew why Vanessa Hudgens got in trouble, but (whispering in my ear) she wouldn't talk about it.
Between these two parties and Christmas, the play room is about to burst apart. We have almost as much Play-Doh as Toys R Us, and DramaQueen has three Hannah Montana dolls, all slightly different. And the number of WebKinz is rapidly growing, because DramaQueen has saved up quite a bit of cash. Ganz has a good thing going: like beanie babies with their own internet site. DramaQueen frequently checks to see which ones are being retired, and bewails her fate, that she does not have the Pegasus, or the Unicorn, or what have you.
Well, off I go. Next week is going to be stomach churning.
Afterthought: If you are familiar with High School Musical, i.e. if you have girls between the age of 5 and 18, you really must check out this Indian version of All for One.
On a positive note, Firecracker's birthday party was yesterday. A dear friend opened her house for the party, and her husband dressed up as a pirate. We had treasure maps for the kids, and they had set up an obstacle course and a bouncy room in the basement. The treasure hunt was kind of chaotic, and one little girl kept disappearing and once tried to insert herself between the couch and the wall. There was one total meltdown when a little girl called a little boy "baby", and the pirate had to comfort him. One child had a peanut allergy, which I only heard about the morning of the party, so the store-bought cake was off limits, and for some reason the ice cream we provided brought tears to her eyes. I also got to meet the little boy that Firecracker has talked about quite a bit "Today Eric was nice to me," "Today Eric was mean to me," "Eric is my friend," "Eric says he's not my friend" (said with sobs), and even "This Friday Eric is going to be mean to me." Already Eric knows how to string a girl along. You can tell he will grow up to be quite a heartbreaker--dark hair, big eyes, charming smile. A good party altogether. The kids seem to really like each other--every time a new arrival appeared at the door there was general hysteria, as if the latest pop star had appeared.
I never wrote about DramaQueen's party. We took 10 girls to see a local production of High School Musical. And survived. I was worried that we might need some entertainment, games or something during the home portion, but 10 8-year-olds need nothing. One wise little girl told me that she knew why Vanessa Hudgens got in trouble, but (whispering in my ear) she wouldn't talk about it.
Between these two parties and Christmas, the play room is about to burst apart. We have almost as much Play-Doh as Toys R Us, and DramaQueen has three Hannah Montana dolls, all slightly different. And the number of WebKinz is rapidly growing, because DramaQueen has saved up quite a bit of cash. Ganz has a good thing going: like beanie babies with their own internet site. DramaQueen frequently checks to see which ones are being retired, and bewails her fate, that she does not have the Pegasus, or the Unicorn, or what have you.
Well, off I go. Next week is going to be stomach churning.
Afterthought: If you are familiar with High School Musical, i.e. if you have girls between the age of 5 and 18, you really must check out this Indian version of All for One.
Friday, February 01, 2008
The Friday Five: Superbowl and Saints
Sally at Eternal Echoes writes;
There is so much going on this weekend that I thought I'd provide an options Friday 5!!!!
First Superbowl ( someone explain to this Brit the significance)- love it or hate it?
5 reasons please!!!!! I can’t explain it—I don’t like football at all and don’t know one team from another. I can give you 5 reasons it annoys me:
1. It’s taking up valuable TV time.
2. People talk about it as if it’s important.
3. Magazines and newspapers are full of dumb articles about how to host a Superbowl party.
4. I find the rules of football immensely boring.
5. The players are paid a ridiculous amount of money and the advertisers pay a ridiculous amount of money to inspire us to buy more stuff, and then we get to hear about how much a Superbowl advertising spot costs, and who paid the most, blah blah blah. At least some of the commercials are entertaining—but I can always watch those on YouTube later.
Second Candlemas/ Imbloc/ Groundhog day/ St Brigid's day- all of these fall on either the 1st or 2nd February.
I do, however, offer this link on how Famous Authors Predict the Winner of the Superbowl.
1. Do you celebrate one or more of these? Some of these I’ve never even heard of? What’s Imbloc? What’s Candlemas? Are they pagan holidays? And I imagine if so that there is a direct connection between them and St. Brigid. But no, I don’t celebrate any of these.
2. How? N/A
3. Is this a bit of fun or deeply significant? N/A
4. Are festivals/ Saints days important to you? Nope. I don’t know the saints and my Southern Baptist upbringing has imbued me with a resistance to the whole saint thing, not to mention paganism. It’s not that I have a problem with people celebrating saints or the great goddess, just that it has no appeal to me on any level. Except that I like the artwork inspired by saints, and I find syncretism interesting.
5.Name your favourite Saints day/ celebration. I don’t have one except Christmas.
Bonus- 2nd Feburary is also my Birthday- I will donate £1.00 for every comment on my Friday Five Post to the Methodist Relief and Development Fund.
That’s a great thing for you to do! As you can see, it inspired me to talk about football! And HAPPY BIRTHDAY, SALLY!
There is so much going on this weekend that I thought I'd provide an options Friday 5!!!!
First Superbowl ( someone explain to this Brit the significance)- love it or hate it?
5 reasons please!!!!! I can’t explain it—I don’t like football at all and don’t know one team from another. I can give you 5 reasons it annoys me:
1. It’s taking up valuable TV time.
2. People talk about it as if it’s important.
3. Magazines and newspapers are full of dumb articles about how to host a Superbowl party.
4. I find the rules of football immensely boring.
5. The players are paid a ridiculous amount of money and the advertisers pay a ridiculous amount of money to inspire us to buy more stuff, and then we get to hear about how much a Superbowl advertising spot costs, and who paid the most, blah blah blah. At least some of the commercials are entertaining—but I can always watch those on YouTube later.
Second Candlemas/ Imbloc/ Groundhog day/ St Brigid's day- all of these fall on either the 1st or 2nd February.
I do, however, offer this link on how Famous Authors Predict the Winner of the Superbowl.
1. Do you celebrate one or more of these? Some of these I’ve never even heard of? What’s Imbloc? What’s Candlemas? Are they pagan holidays? And I imagine if so that there is a direct connection between them and St. Brigid. But no, I don’t celebrate any of these.
2. How? N/A
3. Is this a bit of fun or deeply significant? N/A
4. Are festivals/ Saints days important to you? Nope. I don’t know the saints and my Southern Baptist upbringing has imbued me with a resistance to the whole saint thing, not to mention paganism. It’s not that I have a problem with people celebrating saints or the great goddess, just that it has no appeal to me on any level. Except that I like the artwork inspired by saints, and I find syncretism interesting.
5.Name your favourite Saints day/ celebration. I don’t have one except Christmas.
Bonus- 2nd Feburary is also my Birthday- I will donate £1.00 for every comment on my Friday Five Post to the Methodist Relief and Development Fund.
That’s a great thing for you to do! As you can see, it inspired me to talk about football! And HAPPY BIRTHDAY, SALLY!
Wednesday, January 30, 2008
Dear Mr. Endocrinologist
I understand that we were supposed to visit you 6 months ago; however, it proved extremely difficult to juggle our various priorities and medical concerns. 2007 was hell. We went through breast cancer, mastectomy, reconstructive surgery, a week-long in hospital video EEG, immune disorders, a diagnosis for our child that threw us for a loop, reconstructive surgery, and did I mention more reconstructive surgery? And 2008 isn’t looking so great, either. Today I am using my non-existent sick leave to visit you, prior to the non-existent sick leave I will have to take for my daughter’s week-long surgery, for which I will receive no salary, much as we need the salary to cover deductibles, co-pays for doctors and specialists such as yourself, and the $1000 a year in meds that we require.
So, amaze me. Pull out all the stops. Demonstrate all you know about the connection between the endocrine system and tuberous sclerosis. Order some more tests. Examine my daughter from head do toe. Because I better be here for more than you glancing at my daughter for a few minutes and handing me a prescription.
Sincerely,
Very ticked off mother
So, amaze me. Pull out all the stops. Demonstrate all you know about the connection between the endocrine system and tuberous sclerosis. Order some more tests. Examine my daughter from head do toe. Because I better be here for more than you glancing at my daughter for a few minutes and handing me a prescription.
Sincerely,
Very ticked off mother
Monday, January 28, 2008
Cough, Cough, Cough
Cold fingers have been playing along my spine today. Firecracker has caught whatever virus I had and is coughing. Her school nurse even called today, asking to use the nebulizer sooner than indicated. Pneumonia, I worry. Pneumonia, pneumonia, pneumonia. We have spent a lot of time with Firecracker in the hospital with pneumonia. So today I have a dark feeling of dread. Isn’t it odd that I find this more sinister than the upcoming brain surgery? I guess it is because I remember how long she was on oxygen after her birth, and how the nurses gave me steroid shots in the hopes of maturing her lungs before I finally gave birth. They only got to inject 2 of 3. Would that third shot have done the trick? Because she was so premature, she has chronic lung disease. That sounds so ugly: chronic lung disease. I prefer the way the pulmonologist termed it: bronchopulmonary dysplasia. There’s nothing to be done about this chronic lung disease. They can’t remove it the way they can remove a tuber from her brain. She’s stuck with it, on top of worrying about whether the tuberous sclerosis will affect her lungs as she gets older and cause LAM--lymphangioleiomyomatosis--which can only be cured with a lung transplant.
I've spent almost 6 years now worrying about Firecracker. Those 2 months in the NICU after her birth were just the start of an endless journey.
I've spent almost 6 years now worrying about Firecracker. Those 2 months in the NICU after her birth were just the start of an endless journey.
Friday, January 25, 2008
Gratitude
There have been a lot of visits to Firecracker's Caringbridge page recently. Dear Husband alerted me to the sudden boost in traffic, and I know that many of you RevGals have been there to visit. Thank you so much for your prayers. I've been amazed at the love shown to us.
My posting has been sluggish. I suppose I've lost some of the fun of it. My energy has flagged. I've exhausted much of my good humor.
Certainly not everything has been dreary--not by a long shot. Christmas was wonderful. DramaQueen had a lovely birthday party, and a friend and I are planning a pirate party for Firecracker--there will even be a treasure hunt. It snowed one day and we all went outside and had a snowball fight. That was one of the best days, one of the most purely happy days I've known of late. My friend is also organizing a logistical chart to coordinate help during Firecracker's hospital stay, as well as rounding up my coworkers to make posters and create fun diversions for her.
I'm home sick today. That gives me the chance to rest in more ways than one. Last night I woke up terribly frightened. I wasn't awake enough to sort out what I was afraid of, but my muscles were tensed and my heart racing. I need a rest from such moments. I need a rest from trying hard to focus and concentrate. No wonder I caught the flu or whatever it is. My brain has worn itself out. So I'm grateful even to be sick right now, because I can rest and just look out at the sunshine from the sanctuarly of my bed.
Thanks again, everyone.
My posting has been sluggish. I suppose I've lost some of the fun of it. My energy has flagged. I've exhausted much of my good humor.
Certainly not everything has been dreary--not by a long shot. Christmas was wonderful. DramaQueen had a lovely birthday party, and a friend and I are planning a pirate party for Firecracker--there will even be a treasure hunt. It snowed one day and we all went outside and had a snowball fight. That was one of the best days, one of the most purely happy days I've known of late. My friend is also organizing a logistical chart to coordinate help during Firecracker's hospital stay, as well as rounding up my coworkers to make posters and create fun diversions for her.
I'm home sick today. That gives me the chance to rest in more ways than one. Last night I woke up terribly frightened. I wasn't awake enough to sort out what I was afraid of, but my muscles were tensed and my heart racing. I need a rest from such moments. I need a rest from trying hard to focus and concentrate. No wonder I caught the flu or whatever it is. My brain has worn itself out. So I'm grateful even to be sick right now, because I can rest and just look out at the sunshine from the sanctuarly of my bed.
Thanks again, everyone.
Tuesday, December 18, 2007
Adderall is my friend, I think
I've always thought I was the least likely person to have ADD. After all, I was as far from hyperactive as you can get, and I love to read, and I made it through school with good grades. Sure I drifted aimlessly from day to day and had no idea what to do with myself if I wasn't at work or school. Empty time sure was empty. When I was a kid I hated summer for this reason. I would draw up elaborate schedules, but I could never keep it up. I loved school--so ordered, so rhythmic. It was such a relief to know that I was supposed to be in place B at time A. And schoolwork was easy, as long as I liked my classes, and I usually did. I was bored a lot, but mostly at home.
I don't think I ever owned a calendar, much less a planner. I have no idea how I got through college without missing assignments, exams, whatever. I don't remember having a date book until I was in my 30s and I started a job where they made you take a Franklin Covey seminar. I hate Franklin Covey. I hate his bulky planners and his goal charts and the stupid seminars. But I was sucked into the world of planners. I've carried a lot of them, and written in appointments. Unfortunately, I usually forget to look at them.
My coping mechanisms consisted mostly of letting someone else take care of the important stuff at home and never committing to anything that required a due date. And then along came kids, and suddenly there were doctors and dentists, and then specialists and day care providers and forms and charts and a mountain of bills, statements, applications, laundry, toys, diaper bags, commutes. Now, after seven years of motherhood, I am going to admit that I have lost it and probably never had it. I regularly misplace papers. I forget doctor appointments. Sometimes I show up at appointments on the wrong day. I can start on one project and somehow end up researching the name of that obscure actor in movie x. I've written checks off the wrong account. I can forget what you are saying while you are talking to me, because my mind snagged on one of your words and that reminded me that I have to remember to not forget to pick up the dry-cleaning. I write notes to myself on my hands in Sharpie. I forget to reorder prescriptions before I hit the last pill, at which point I notice that the label says "No More Refills." The flip side is that I can become so obsessed with a project that I don't notice the laundry or the dishes, or how very late it is getting. It seems perfectly reasonable that I can pack three lunches, clean the kitchen, load the dishwasher and finally fold the laundry at eleven pm. Even though I've never been a great homemaker, I've always managed to hold it together at work, but not now. I've always been great at ideas and lousy at follow-through, but now I feel like a gibbering idiot in a cubicle.
Our life only runs smoothly because of Dear Husband. He pays the bills and realizes that if we are going on a trip on the 11th, certain preparations need to start on the 5th. When I hedge, he is decisive. When I dawdle, he keeps me on track.
So, Adderall, let's see what you can do.
I don't think I ever owned a calendar, much less a planner. I have no idea how I got through college without missing assignments, exams, whatever. I don't remember having a date book until I was in my 30s and I started a job where they made you take a Franklin Covey seminar. I hate Franklin Covey. I hate his bulky planners and his goal charts and the stupid seminars. But I was sucked into the world of planners. I've carried a lot of them, and written in appointments. Unfortunately, I usually forget to look at them.
My coping mechanisms consisted mostly of letting someone else take care of the important stuff at home and never committing to anything that required a due date. And then along came kids, and suddenly there were doctors and dentists, and then specialists and day care providers and forms and charts and a mountain of bills, statements, applications, laundry, toys, diaper bags, commutes. Now, after seven years of motherhood, I am going to admit that I have lost it and probably never had it. I regularly misplace papers. I forget doctor appointments. Sometimes I show up at appointments on the wrong day. I can start on one project and somehow end up researching the name of that obscure actor in movie x. I've written checks off the wrong account. I can forget what you are saying while you are talking to me, because my mind snagged on one of your words and that reminded me that I have to remember to not forget to pick up the dry-cleaning. I write notes to myself on my hands in Sharpie. I forget to reorder prescriptions before I hit the last pill, at which point I notice that the label says "No More Refills." The flip side is that I can become so obsessed with a project that I don't notice the laundry or the dishes, or how very late it is getting. It seems perfectly reasonable that I can pack three lunches, clean the kitchen, load the dishwasher and finally fold the laundry at eleven pm. Even though I've never been a great homemaker, I've always managed to hold it together at work, but not now. I've always been great at ideas and lousy at follow-through, but now I feel like a gibbering idiot in a cubicle.
Our life only runs smoothly because of Dear Husband. He pays the bills and realizes that if we are going on a trip on the 11th, certain preparations need to start on the 5th. When I hedge, he is decisive. When I dawdle, he keeps me on track.
So, Adderall, let's see what you can do.
Bah
I've started this stupid post half a dozen times now. There's no flow.
Firecracker's surger is set for February 8 and that just sucks. February 9 is her birthday. How am I going to explain surgery to her? How am I going to handle watching her handle it? Sometimes I just want to kick God's shins.
Firecracker's surger is set for February 8 and that just sucks. February 9 is her birthday. How am I going to explain surgery to her? How am I going to handle watching her handle it? Sometimes I just want to kick God's shins.
Monday, November 26, 2007
And They're Off
That's how it feels as the seasons begins to speed out of the starting gate of Thanksgiving and careen out of control on its way to Christmas. I've been lying low, wondering what to do with myself. We still don't have a date for Firecracker's surgery. I seem to forget things left and right. There's a poem about losing things, but I can't remember who wrote it. I have an enormous fine at the library and I will soon have to slink in sheepishly and pay it off (actually, Dear Husband told me he took care of it, bless his heart). Today we went in search of colored lights on white wire. You would think that would be pretty easy to come by, since trees come in a rainbow of colors these days. Firecracker almost had a meltdown because it looked as if we would have to settle for clear lights on white, which according to her: "That not going to be beautiful." We finally found the blasted lights, at which point Firecracker pointed at a tree with CLEAR lights and said "I like that".
From now until Christmas work is a madhouse. I have to make cookies for two different events, purchase tea for another, and make it to both my girls' school parties and the volunteer project my office signed up for, which of course are on the same blessed day. Oh, and then there's Secret Santa presents to prepare, and my final surgery, which means hauling myself to the hospital for blood work, and then there are at least three other medical appointments and probably more if I were actually keeping up to speed.
And now if I can just fend off the impulse to try for a "perfect" Christmas. I remember the Christmases of my childhood as magical, which given my parents cannot possibly have been the case. Maybe I thought Santa was so great because he had nothing to do with my family and that gave me hope. But still I surround myself with magazines full of picture of perfectly decorated trees and tables, with attractive families trekking across the snowy fields with freshly gathered evergreen branches to put on the mantle. And there are always these suggestions for inventive ways to wrap presents. Good heavens. I was so excited that I can find gift bags and tissue paper at the dollar store that I thought surely we would no longer need to tie red raffia over hand-stamped brown paper, affixing a cookie cutter or wooden spoon, loofah, manicure set, small animal or other item to the package as a sort of lagniappe. Our presents have presents. It's presents all the way down.
I'm off to figure out how to keep the cats out of the tree, since the other day I walked in to find it lying forlornly on its side.
From now until Christmas work is a madhouse. I have to make cookies for two different events, purchase tea for another, and make it to both my girls' school parties and the volunteer project my office signed up for, which of course are on the same blessed day. Oh, and then there's Secret Santa presents to prepare, and my final surgery, which means hauling myself to the hospital for blood work, and then there are at least three other medical appointments and probably more if I were actually keeping up to speed.
And now if I can just fend off the impulse to try for a "perfect" Christmas. I remember the Christmases of my childhood as magical, which given my parents cannot possibly have been the case. Maybe I thought Santa was so great because he had nothing to do with my family and that gave me hope. But still I surround myself with magazines full of picture of perfectly decorated trees and tables, with attractive families trekking across the snowy fields with freshly gathered evergreen branches to put on the mantle. And there are always these suggestions for inventive ways to wrap presents. Good heavens. I was so excited that I can find gift bags and tissue paper at the dollar store that I thought surely we would no longer need to tie red raffia over hand-stamped brown paper, affixing a cookie cutter or wooden spoon, loofah, manicure set, small animal or other item to the package as a sort of lagniappe. Our presents have presents. It's presents all the way down.
I'm off to figure out how to keep the cats out of the tree, since the other day I walked in to find it lying forlornly on its side.
Monday, October 08, 2007
Report on the Conference
This past weekend we attended a regional conference on Tuberous Sclerosis. I have information overload. They did drawings for one-on-one meetings with various specialists, and we were able to snag meetings with Firecracker's surgeon-to-be and a geneticist. The genetics are too complicated to think about. Abby's genetics test came back negative for known mutations on the TS genes, but it seems that you can have the mutation in particular tissues (as opposed to the blood they test) and nowhere else, or there may be mutations they don't know about yet. So her labwork is going off to some research center to be mulled over.
They fed us well at the conference. That's more important than people think. We met many nice people, very few of whom had a child diagnosed so late. Some had children with severe autism and developmental disabilities. I met one person who found out she and her sister had it after their children were diagnosed. Dear Husband joked that he was going to Home Depot to buy a blacklight (to look for the characteristic depigmented spots on the skin). We're all very fair, so it's hard to see if we have hypopigmentation.
That's all for now. I'm tired and very sad about it all. DramaQueen is feeling insecure because Firecracker gets so much attention. I feel too tired to be nice to anyone. Someone at work ticked me off royally and I thought how annoying it is that people think I should give a damn.
On a postive note, the director once again passed along some PASTE cds, and he's promised to hand on a Sufjen Stevens CD. Finally I can find out what all the fuss is about.
They fed us well at the conference. That's more important than people think. We met many nice people, very few of whom had a child diagnosed so late. Some had children with severe autism and developmental disabilities. I met one person who found out she and her sister had it after their children were diagnosed. Dear Husband joked that he was going to Home Depot to buy a blacklight (to look for the characteristic depigmented spots on the skin). We're all very fair, so it's hard to see if we have hypopigmentation.
That's all for now. I'm tired and very sad about it all. DramaQueen is feeling insecure because Firecracker gets so much attention. I feel too tired to be nice to anyone. Someone at work ticked me off royally and I thought how annoying it is that people think I should give a damn.
On a postive note, the director once again passed along some PASTE cds, and he's promised to hand on a Sufjen Stevens CD. Finally I can find out what all the fuss is about.
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