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-I've been having nightmares. Tons and tons of nightmares. In one night I dreamed that;
*I went to Laura's and when I got there, there was police tape up blocking the way into the house, and she was outside on the sidewalk crying hysterically because something had happened to Brian
*I was in the horrible institutionalized place I've had reccuring nightmares about for like a year now, this time with my whole family plus Shaun. Shaun and I ended up tiptoe-ing around in the middle of the night, tense with fear, as I wished Grant were awake with us
*I took Elise to the neurologist and after passing her exam, he said, "You have to understand that she could revert back and lose all of her progress suddenly, at any moment."
ARGH.
-We went yesterday to a potluck meetup with the local Natural Family group - this was hosted by a family with 6 kids, so just between us two there were 11. It was pretty great - their house was amazing, the kids had a blast, everyone loved the food I brought.
-There's been a lot of discussion and decision making that has culminated in my brother moving in with us. He and Robbie will share what used to be the office, and it shouldn't be too bad since Grant's been mostly working outside the house or once kids are in bed anyway. Laura is going to help him get a license and diploma while Grant teaches him computers and I enforce chores for him and generally teach him whatever I can in the course of every day life. Thus far it seems to revolve mostly around basic household cleaning, cooking tips, current events I read about and scientific tidbits the kids are interested in. It's a sort of intensive group effort that was a long time in deciding, but really he is 17, smart, ignorant, giving, unmotivated and just generally teetering on the brink of some sort of adulthood. If we can improve the sort, that would be very worthwhile. Grant Sr is shockingly on board for this. When we broached the subject with him, he had already been thinking about it a lot, and his response was, "I've been thinking there's not much good for anyone in him going back to Jacksonville and taking 9th grade over. I guess I'll order some bunk beds". I think he's mildly thrilled to get Robbie out of his room and have it to himself (the office has an exterior door and he was uncomfortable with Robbie staying in it alone, but this way he's fine about it). Our grocery bill is INSANE - those days of my $125 a week budget are long, long gone. With Robbie home from school and Bob here, in addition to our kids getting bigger and me not cooking every-everything from scratch anymore due to lack of time, it's more like $350 a week. Which is $1400 a month. Which is insane. But most of the time I'm just very grateful that we have it to spend, and that we eat well.
We had a photo shoot the other day. Ananda picked out clothes for, and then dressed Elise. I thought it was cute, but needed something, and ten minutes later was cutting up fabric and tying a giant bow on her head. I have to admit I think it was fabulous, even if Laura and Frank did call her Aunt Jemima ;)
( Read more... )
This morning I woke up and looked at her and it just really, really hit me harder than it ever has before, how INCREDIBLY blessed I am. She's scooting and shimmying her way forward pretty regularly now, and can sit independantly for 10-15 seconds at a time. At not-even-3 1/2 months old. My little girl who was swollen all over from fluid retention with her kidneys shut down (she still has some light marks over her left eye, from her lids being like fat little balls full of broken capillaries, from the pressure). My little girl who's liver might not ever have started up. My little girl with half the heart-rate she was supposed to have, intubated and unconscious for a week - it knocks me breathless. It really does. When I got that first MRI result, and was told she might not ever be conscious and certainly wouldn't have any individual personality, I went back up to my hospital room all raw and weary, and my devotional book was all about miracles and healing. I laughed. I couldn't believe that. I felt so vulnerable, I wasn't going to be neck-deep in traumatizing denial, too. Wasn't going to be let down over and over. Never mind that that book is always right, for years now. I tried, particularly when the next few days were about steadfast faith and believing when it's hard. I showed Grant, and HE believed. I will admit I thought he was getting a bit foolish. I was hoping she'd just open her eyes again one day, and there he was saying she'd be totally alright and completely normal?
Well, I also laughed when he said he loved me when we were 13 and he'd known me for a week. But he's never taken that back, either. I wish I were brave enough to hope in the way that he does, in the face of everything that makes sense, on sheer intuition. Faith.
Even when she was holding up her head and smiling and starting to coo, on the way home, at Dama's house - I showed Dama the book and the things it had said, but in a "Wouldn't that be so awesome, if she could be maybe just mostly alright?" sort of wistfulness. I was still dosing her with phenobarbital twice a day. I was still forcing smiles through tremors (that have almost completely stopped).
Anyway, today I was watching her scooting forward and Annie was making her laugh over and over, and all of a sudden I wanted to run in a tight little circle yelling "Hallelujah!", or something. I had such a crazy lot of joy, just then, I scooped her up naked from the changing table and tried not to kill her with squeezing.
There's just no way to describe the feeling of her on my chest.
SOOooo. Other than all of this sort of thing. Ananda, Aaron and I are really enjoying Narnia. Annie gets it more, he gets it. We've started winding down to reading time with some stretches and slow breathing, and it REALLY helps him to actually sit still and pay attention, like, A LOT. Reading is such a lot of schooltime, lately, because I usually get asked what at least 2 words mean every night, as well as stopping to explain the really staggering amount of Christian metaphor.
AND. Neurology is a thing for me, now. I have a neurology feed in my google homepage, that I read whenever I can steal a moment. I found some absolutely mind-blowing (no pun intended...) neuro articles when we were at the Miami Museum of Science. I've read 3 books about brain injuries, since Elise was born. Grant and my sister have to listen to a neverending stream of things like "Did you know that Einstein's parietal lobe wasn't divided in two, so his spacial reasoning..." and "They actually located the precise spot where the fever response comes from!" I am more of a nerd than ever. And I love it. I've been thinking that once I complete my psych degree I might do under-studying or labwork to become a neuroscientist. Not a neurologist - I can't even imagine going to medical school or performing a surgery or prescribing seizure meds to people. But a neuroscientist, who interprets studies and writes about their field and analyzes patients and talks with parents? Heck yeah. Laura joked that I seem perfect for that kind of work, as someone with an otherwise rather useless level of reading speed and comprehension, and how I'll fit right in with how I can't carry a train of thought and lose everything all the time :p (The neurologists we've met are REALLY quirky people - the first one I talked to was a very old man wearing a bow tie and cowboy boots with his suit). I really like part time/independant study college as a part of my life. It's just enough mental stimulation and "something for me" to satisfy me and make me feel confident that one day the kids'll be grown and I'll be doing my own thing, without pulling me out of the house constantly or making me dissatisfied with my current life.
My current life! OH MAN. Nobody else will find this as exciting as I do, but that does not temper my own enthusiasm one damned bit. I finally figured out what I want on my belly cast. It just clicked, and it's perfect. I want it to be painted like me, realistically, but with the belly painted a la Salvador Dali's The Bleeding Roses. My tender, sore stomach; my being done having kids and soon to start my period; my tragedy that still turned out so beautiful; and that it is raw, and real, and messy, and dramatic, and even a little embarassing. That picture is just exactly how I feel. FYI, if you hadn't noticed, this icon is a crop of the painting. I emailed Kristin about it and she called me back within the hour, also excited - she says people always want the same cutesie stuff and this is like a treat for her.
*I went to Laura's and when I got there, there was police tape up blocking the way into the house, and she was outside on the sidewalk crying hysterically because something had happened to Brian
*I was in the horrible institutionalized place I've had reccuring nightmares about for like a year now, this time with my whole family plus Shaun. Shaun and I ended up tiptoe-ing around in the middle of the night, tense with fear, as I wished Grant were awake with us
*I took Elise to the neurologist and after passing her exam, he said, "You have to understand that she could revert back and lose all of her progress suddenly, at any moment."
ARGH.
-We went yesterday to a potluck meetup with the local Natural Family group - this was hosted by a family with 6 kids, so just between us two there were 11. It was pretty great - their house was amazing, the kids had a blast, everyone loved the food I brought.
-There's been a lot of discussion and decision making that has culminated in my brother moving in with us. He and Robbie will share what used to be the office, and it shouldn't be too bad since Grant's been mostly working outside the house or once kids are in bed anyway. Laura is going to help him get a license and diploma while Grant teaches him computers and I enforce chores for him and generally teach him whatever I can in the course of every day life. Thus far it seems to revolve mostly around basic household cleaning, cooking tips, current events I read about and scientific tidbits the kids are interested in. It's a sort of intensive group effort that was a long time in deciding, but really he is 17, smart, ignorant, giving, unmotivated and just generally teetering on the brink of some sort of adulthood. If we can improve the sort, that would be very worthwhile. Grant Sr is shockingly on board for this. When we broached the subject with him, he had already been thinking about it a lot, and his response was, "I've been thinking there's not much good for anyone in him going back to Jacksonville and taking 9th grade over. I guess I'll order some bunk beds". I think he's mildly thrilled to get Robbie out of his room and have it to himself (the office has an exterior door and he was uncomfortable with Robbie staying in it alone, but this way he's fine about it). Our grocery bill is INSANE - those days of my $125 a week budget are long, long gone. With Robbie home from school and Bob here, in addition to our kids getting bigger and me not cooking every-everything from scratch anymore due to lack of time, it's more like $350 a week. Which is $1400 a month. Which is insane. But most of the time I'm just very grateful that we have it to spend, and that we eat well.
We had a photo shoot the other day. Ananda picked out clothes for, and then dressed Elise. I thought it was cute, but needed something, and ten minutes later was cutting up fabric and tying a giant bow on her head. I have to admit I think it was fabulous, even if Laura and Frank did call her Aunt Jemima ;)
( Read more... )
This morning I woke up and looked at her and it just really, really hit me harder than it ever has before, how INCREDIBLY blessed I am. She's scooting and shimmying her way forward pretty regularly now, and can sit independantly for 10-15 seconds at a time. At not-even-3 1/2 months old. My little girl who was swollen all over from fluid retention with her kidneys shut down (she still has some light marks over her left eye, from her lids being like fat little balls full of broken capillaries, from the pressure). My little girl who's liver might not ever have started up. My little girl with half the heart-rate she was supposed to have, intubated and unconscious for a week - it knocks me breathless. It really does. When I got that first MRI result, and was told she might not ever be conscious and certainly wouldn't have any individual personality, I went back up to my hospital room all raw and weary, and my devotional book was all about miracles and healing. I laughed. I couldn't believe that. I felt so vulnerable, I wasn't going to be neck-deep in traumatizing denial, too. Wasn't going to be let down over and over. Never mind that that book is always right, for years now. I tried, particularly when the next few days were about steadfast faith and believing when it's hard. I showed Grant, and HE believed. I will admit I thought he was getting a bit foolish. I was hoping she'd just open her eyes again one day, and there he was saying she'd be totally alright and completely normal?
Well, I also laughed when he said he loved me when we were 13 and he'd known me for a week. But he's never taken that back, either. I wish I were brave enough to hope in the way that he does, in the face of everything that makes sense, on sheer intuition. Faith.
Even when she was holding up her head and smiling and starting to coo, on the way home, at Dama's house - I showed Dama the book and the things it had said, but in a "Wouldn't that be so awesome, if she could be maybe just mostly alright?" sort of wistfulness. I was still dosing her with phenobarbital twice a day. I was still forcing smiles through tremors (that have almost completely stopped).
Anyway, today I was watching her scooting forward and Annie was making her laugh over and over, and all of a sudden I wanted to run in a tight little circle yelling "Hallelujah!", or something. I had such a crazy lot of joy, just then, I scooped her up naked from the changing table and tried not to kill her with squeezing.
There's just no way to describe the feeling of her on my chest.
SOOooo. Other than all of this sort of thing. Ananda, Aaron and I are really enjoying Narnia. Annie gets it more, he gets it. We've started winding down to reading time with some stretches and slow breathing, and it REALLY helps him to actually sit still and pay attention, like, A LOT. Reading is such a lot of schooltime, lately, because I usually get asked what at least 2 words mean every night, as well as stopping to explain the really staggering amount of Christian metaphor.
AND. Neurology is a thing for me, now. I have a neurology feed in my google homepage, that I read whenever I can steal a moment. I found some absolutely mind-blowing (no pun intended...) neuro articles when we were at the Miami Museum of Science. I've read 3 books about brain injuries, since Elise was born. Grant and my sister have to listen to a neverending stream of things like "Did you know that Einstein's parietal lobe wasn't divided in two, so his spacial reasoning..." and "They actually located the precise spot where the fever response comes from!" I am more of a nerd than ever. And I love it. I've been thinking that once I complete my psych degree I might do under-studying or labwork to become a neuroscientist. Not a neurologist - I can't even imagine going to medical school or performing a surgery or prescribing seizure meds to people. But a neuroscientist, who interprets studies and writes about their field and analyzes patients and talks with parents? Heck yeah. Laura joked that I seem perfect for that kind of work, as someone with an otherwise rather useless level of reading speed and comprehension, and how I'll fit right in with how I can't carry a train of thought and lose everything all the time :p (The neurologists we've met are REALLY quirky people - the first one I talked to was a very old man wearing a bow tie and cowboy boots with his suit). I really like part time/independant study college as a part of my life. It's just enough mental stimulation and "something for me" to satisfy me and make me feel confident that one day the kids'll be grown and I'll be doing my own thing, without pulling me out of the house constantly or making me dissatisfied with my current life.
My current life! OH MAN. Nobody else will find this as exciting as I do, but that does not temper my own enthusiasm one damned bit. I finally figured out what I want on my belly cast. It just clicked, and it's perfect. I want it to be painted like me, realistically, but with the belly painted a la Salvador Dali's The Bleeding Roses. My tender, sore stomach; my being done having kids and soon to start my period; my tragedy that still turned out so beautiful; and that it is raw, and real, and messy, and dramatic, and even a little embarassing. That picture is just exactly how I feel. FYI, if you hadn't noticed, this icon is a crop of the painting. I emailed Kristin about it and she called me back within the hour, also excited - she says people always want the same cutesie stuff and this is like a treat for her.
