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altarflame-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 ;)
This is not that great of a picture, but it shows the chest lifting she's been doing all the time lately.
This is when the bow was still new.
But as I didn't do any seaming or sewing of it, it was falling apart by the late afternoon.
She kills me.
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 ;)
This is not that great of a picture, but it shows the chest lifting she's been doing all the time lately.
This is when the bow was still new.
But as I didn't do any seaming or sewing of it, it was falling apart by the late afternoon.
She kills me.
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.
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no subject
Date: 2007-08-11 12:37 am (UTC)About the neuroscientist thing, you could also do neuropsych, since you're getting a bachelor's in psych anyway, right? I won't pretend to know anything about it, because I got a psych degree and then specialized in clinical psych and have truly never taken a neuropsych class. But, I do know it exists. LOL Another thing, if Neurology interests you, what about Cognition/Cognitive Psych? It's a big yawn to me, but hey, if you're that type of nerd.... LOL
no subject
Date: 2007-08-11 07:42 am (UTC)My sister was telling me about transpsychology (I think?) which considers spiritual health as well as physical, mental and emotional. I love analyst work and abnormal psych. I don't know what I want to do, exactly, but the good news is that as I'll be getting any and all degrees at a snail's pace and not hoping to actually do paid work in the field for another 10-15 years, I can take my time deciding ;)
no subject
Date: 2007-08-11 12:41 am (UTC)no subject
Date: 2007-08-11 02:23 am (UTC)People don't understand that if this same thing had happened down here where we live, she would have died or at least been in a much worse situation. My local hospital doesn't even have neonatologists on staff, much less neonatal neurologists. If I had had a repeat cesarean at Jackson Hospital, I might have died. Or I might have lost control of my bladder.
I guess most people don't know what it's like to do the mainstream thing, get the repeat c/s, and have it land your kid in the NICU. You really realize that just because it's common, it isn't safe.
But this is something I could go on about forever, and I'll just get more and more angry.
The point was just that I think it's ok for you to laugh about that stuff, but I can only be grateful for how it's turned out thus far. Because the truth is that as parents, we never know how anything will turn out.
no subject
Date: 2007-08-11 03:44 am (UTC)no subject
Date: 2007-08-11 07:48 am (UTC)This is slightly off topic, but just thinking of people assuming I caused Elise's (random, totally unforseeable) problems by persuing what would be (according to many books, several doctors and a dozen midwives) safest for us both with everything I had makes me want to say...
Why are people looking for something bad? Why is everyone so quick to jump on others, and judge, and assume? When I see someone I don't agree with, I try to understand where they're coming from. I try to see everything from other peoples' perspectives, moreso the more I don't agree. And if I do end up talking badly about someone, even if it's a murderer, or a person who's hurt me terribly, it's generally either, A. after a disclaimer and before taking half of it back, or B. Just prior to hating myself for it and repenting. It seriously blows my mind that anyone can just spout off insults without feeling horribly self conscious and ashamed.
Anyway I know you didn't mean to get that tyrade ;) I just thought you would get it.
no subject
Date: 2007-08-11 02:16 am (UTC)hooray
Date: 2007-08-11 02:22 am (UTC)wow! elise is really holding her own ! she looks so strong. :)
annie d
Re: hooray
Date: 2007-08-11 07:52 am (UTC)I definitely think Elise is good for him, and he does help me sometimes (like hanging out with her while I get Jake down for a nap). But, I don't want to start pawning her off on him too often...and if he is working, as he wants to be, and going to school soon, he'll likely be out of the house more often than home, during waking hours.
His interests right now seem to almost all center around animals and technology. So I'm trying to push ideas like working at a vet's office or interning at the zoo, while G gives him comp "Assignments" - like tonight he had to re-install Windows XP on the laptop; last night he helped him reformat a hard drive.
I just have to figure out a way to get him a social life. He is around other people all the time here, which is good because he spent almost all of his time alone in Jax, but he's still not around other teens...
Re: hooray
Date: 2007-08-13 03:19 pm (UTC)annie d
no subject
Date: 2007-08-11 02:30 am (UTC)One thing that struck me: your grocery bill is my take home pay.
no subject
Date: 2007-08-11 08:14 am (UTC)Also: I'm sorry YOU don't have more of a support system :/ I've been thinking of you a lot lately, trying to be a good single parent and your hard past and feeling ostracized from the faith you grew up in. Egads, I wish I could hug you! If we lived closer I would definitely want to get together. I keep having this urge to ask, What can I do for you? But over the internet, I feel so helpless. Yet, many many people have helped me over the internet...so...is there something I can do for you? Does your son need a young penpal? Do you need handed down clothes in his size? Are you trying to think of new things to make for dinner? Or anything?
no subject
Date: 2007-08-11 10:07 pm (UTC)I would love any assistance you would be willing to offer. I am ALWAYS up for dinner ideas, particularly meat-free ones (because meat is expensive, not because I'm a vegetarian. My grocery budget is $25-30 a week.)
Clothes are always welcome since they are a huge expense.
I think Maddox would LOVE a young penpal. I have a friend on my list who used to send him postcards and it made him feel special. I love making him feel special. I would feel blessed if you wanted to have Maddox be a penpal to your kiddos.
Reading your comments are helpful too. As silly as it sounds- knowing someone cares and is thinking of us warms my soul.
no subject
Date: 2007-08-25 09:06 am (UTC)Your grocery budget threw me for a loop, recipe wise. I have two in mind now, though, that we love and are very economical. If you can email me your address, I'll reply with them and then also send you some things soon :)
no subject
Date: 2007-08-25 09:06 am (UTC)no subject
Date: 2007-08-25 08:37 pm (UTC)Will you please e-mail me and I'll email you back?
no subject
Date: 2007-08-11 10:08 pm (UTC)no subject
Date: 2007-08-11 04:38 am (UTC)no subject
Date: 2007-08-11 07:57 am (UTC)Were you ever thinking of a phoenix for Xan's? That's what I thought of. But I didn't want it to seem disrecpectful to, or displacing of Jericho. I mean it as much as a birth experience thing though as anything - your Ubac from the ashes of the knocked out c/s.
no subject
Date: 2007-08-11 03:14 pm (UTC)Just thought I would tell you so.
I really admire the way you care for your family.
no subject
Date: 2007-08-11 03:35 pm (UTC)Okay, Tina. That's enough of your devotional book teasing. I need the name of that book. I want to see if it works for me. I need something.
And hey, if you still have it, link me that Einstein article! There's also a book about his brain (nearly said "brain about his book")... "Einstein's Brain" or something like that, about a guy driving cross-country with the brain to bring it somewhere, but it's spliced in with information about the brain based on tests and autopsy things and such.
no subject
Date: 2007-08-25 09:17 am (UTC)The book is just called, "Daily Prayers and Promises" on one part of the cover, and then "Devotional Journal for Every Day" a little lower. It's copyright 2003 by Barbour Publishing Inc, and lists a website on the inner page called www.barbourbooks.com
That Einstein article was taped to the wall in the Miami Museum of Science, so I don't have it anymore. I do have this new things from tonight that I thought was pretty crazy, though - http://www.medicalnewstoday.com/articles/80607.php
no subject
Date: 2007-08-11 04:39 pm (UTC)Yay psych crap! Im right there w/ya; go for the Ph.D.
<3
no subject
Date: 2007-08-12 01:02 am (UTC)I have thoughts..I think...but I am too stressed and tired to try to form an articulate post. I tried doing it on someone elses journal and it was a mess so I am taking a break from posts with substance.
I always look forward to your updates.
no subject
Date: 2007-08-14 03:21 am (UTC)your belly cast designs sound amazing. Once done I hope we call all see it.
no subject
Date: 2007-08-19 09:36 pm (UTC)Have you heard of neuropsychology? It seems like it's right up your alley. It's where psychology + neuroscience meet, with LOTS of talking to parents, lots of figuring out what's wrong and what's right and what can be done to make things work for a child and her family. (A lot more of interaction with people than most neuroscientists get - trust me, I've done benchwork too!) :D It is a specialty within doctoral programs for Clinical Psychology, so you get a Ph.D., and most people come into the program with a BS or BA in psychology. In most programs you get a full tuition waiver + stipend. I actuallly am currently in UF's clinical psych program, which has a neuropsych track. Until recently I was working on a research study of brain injury in children--pretty fascinating stuff! My goal coming in to the program was to do research on children like Elise, who had suffered perinatal brain injuries--and it was through that interest that I stumbled on your page here.
Anyway - I know you're busy but if you're interested in neuropsych at all, check out Jenni Ogden's "Fractured Minds: Case Studies in Clinical Neuropsychology". It's fascinating!
no subject
Date: 2007-08-25 09:04 am (UTC)Your whole comment is really fascinating, actually. I know a lot of people IRL who are at UF now, so that's interesting too (Zach West, Alice Motes, Estrella Cordero, Robert Jones, Chris Gmuer, and a ton of others...)
Is there a shortage of neuropsychologists? I'm just wondering why the stipends and waivers.