I wonder why I don't draw more daily inspiration from my child. C has several disabilities, to be sure. She doesn't function anywhere near the level of other 4-year-olds. She's "special." "Delayed." And a host of other labels, to be sure...
When you strip all those labels away, though, what you have is a kid who truly LOVES life. She loves to laugh, and she'll find any excuse to burst out in uproarious laughter. She'll turn absolutely anything into a game. When she's told no, she finds another way to go about getting what she wants. Nothing stops her, nothing breaks her spirit, and she is ALWAYS grinning. What a great way to live life!
She is, of course, completely oblivious to the fact that she's not like other kids her age... And why shouldn't she be? What could she possibly gain by knowing that the world sees her as somehow imperfect or incomplete? In her eyes, life is beautiful. Nothing gets her down. Everything is a wonder...
Sometimes, when I'm feeling down or defeated, I really need to just take a look at my kid. Instead of seeing the dreams I had for her that won't come true, I need to focus on the joy in her life. Instead of concentrating on how I can't be all the mother she needs, I need to join in the laughter, become a part of the game, and just enjoy being with her. She's an incredible kid, and she has a lot to teach me, if only I'll open my eyes and ears...
Showing posts with label parenting. Show all posts
Showing posts with label parenting. Show all posts
Friday, June 1, 2012
Wednesday, May 9, 2012
Dreams Never Die
Dreams never die. They may be forgotten for a time, but they live on, indefinitely, until the time comes for the heart to remember. Dreams never die.
Sometimes, it's easy to forget that I once had huge dreams. Like, ENORMOUS dreams. I was going to be a star! I was going to make a living on the stage, live my life as hundreds of different characters in different cities around the globe, become someone else for a few hours every night, and bring joy and perspective to those who came out to see me perform. I had DREAMS.
Then I had a child. Moreover, I had a child with special needs. A child who needs a dedicated team of medical specialists nearby to monitor her progress regularly. A child who needs extra attention, extra help, and structure to her life, more so than some other children. A child who can't be packed up and carted around the country with a touring troupe, or bounced around from apartment to apartment, city after city, without a single home to call her own. A place to grow and thrive. A life that I could never give her if I continued down a path toward the wild and crazy dreams of my young adulthood...
So, my dreams shifted. I dreamed new dreams: dreams of special schools, of helping children, of developmental milestones being reached and tiny smiles on my little one's face. Dreams of her first spoken words, the ability to potty train, walking distances without leg braces, telling me she loves me, her falling in love, her going to college, her falling in love and starting a family of her own... Dreams that are easily as grand and enormous as my dreams of stardom, but in very different ways. Dreams that are just as difficult to achieve as my earlier dreams. Selfless (or mostly selfless) dreams for my child's well-being. Those are the dreams I dream now.
However, even as I dream these new dreams, as I spend my days and nights working toward them, as I go to school in furtherance of them, as I devote my time and energy and heart to that little girl who needs me for so very much, I haven't lost sight of the old dreams. They haven't died. They haven't vanished. They've simply been buried somewhere deep beneath the surface... From time to time, they dig themselves out of their shallow grave, because I can tell myself I have killed them, but they never truly die. They are immortal, and, at times, they are stronger than I. These dreams have a life of their own, and they yearn to be realized. Perhaps they've matured with time, and they've narrowed the scope of their ultimate goals a little. Perhaps New York City and national touring companies are no longer a part of the dream... But the stage is still there. The lights, the greasepaint, the proscenium, the audience... Those things crave realization. They haunt me, and they call to me at night, when the lights are out, when I'm drifting off to sleep and my heart and mind are at their most vulnerable. They whisper in my ear, and they encourage me to seek out auditions, to go to karaoke, to do anything and everything I can to be in the spotlight once again, if only for a brief moment in time.
Dreams never die. They may be forgotten for a time, but they live on, indefinitely, until the time comes for the heart to remember.
Dreams never die.
Sometimes, it's easy to forget that I once had huge dreams. Like, ENORMOUS dreams. I was going to be a star! I was going to make a living on the stage, live my life as hundreds of different characters in different cities around the globe, become someone else for a few hours every night, and bring joy and perspective to those who came out to see me perform. I had DREAMS.
Then I had a child. Moreover, I had a child with special needs. A child who needs a dedicated team of medical specialists nearby to monitor her progress regularly. A child who needs extra attention, extra help, and structure to her life, more so than some other children. A child who can't be packed up and carted around the country with a touring troupe, or bounced around from apartment to apartment, city after city, without a single home to call her own. A place to grow and thrive. A life that I could never give her if I continued down a path toward the wild and crazy dreams of my young adulthood...
So, my dreams shifted. I dreamed new dreams: dreams of special schools, of helping children, of developmental milestones being reached and tiny smiles on my little one's face. Dreams of her first spoken words, the ability to potty train, walking distances without leg braces, telling me she loves me, her falling in love, her going to college, her falling in love and starting a family of her own... Dreams that are easily as grand and enormous as my dreams of stardom, but in very different ways. Dreams that are just as difficult to achieve as my earlier dreams. Selfless (or mostly selfless) dreams for my child's well-being. Those are the dreams I dream now.
However, even as I dream these new dreams, as I spend my days and nights working toward them, as I go to school in furtherance of them, as I devote my time and energy and heart to that little girl who needs me for so very much, I haven't lost sight of the old dreams. They haven't died. They haven't vanished. They've simply been buried somewhere deep beneath the surface... From time to time, they dig themselves out of their shallow grave, because I can tell myself I have killed them, but they never truly die. They are immortal, and, at times, they are stronger than I. These dreams have a life of their own, and they yearn to be realized. Perhaps they've matured with time, and they've narrowed the scope of their ultimate goals a little. Perhaps New York City and national touring companies are no longer a part of the dream... But the stage is still there. The lights, the greasepaint, the proscenium, the audience... Those things crave realization. They haunt me, and they call to me at night, when the lights are out, when I'm drifting off to sleep and my heart and mind are at their most vulnerable. They whisper in my ear, and they encourage me to seek out auditions, to go to karaoke, to do anything and everything I can to be in the spotlight once again, if only for a brief moment in time.
Dreams never die. They may be forgotten for a time, but they live on, indefinitely, until the time comes for the heart to remember.
Dreams never die.
Monday, March 5, 2012
Recognition
Last week, I went to the doctor. Nothing big, just a re-evaluation of my bipolar medication, because my mood stabilizer seems to have had the unexpected side effect of narcolepsy, and I can't afford to keep falling asleep behind the wheel. I wasn't able to get a morning appointment, which meant I had to drag poor C up to Reno with me to wait around in a psychiatric office for an hour.
She kept herself busy in the waiting room by throwing her ball around and chasing it, only to throw it again. After a while, she got bored of that game, and she started to notice the other people in the room.... And their smart phones. THAT got her attention! So then, instead of waiting, I was chasing her down and grabbing her as she tried to steal phone after phone, purse after purse... I was relieved when we got called back to see the doc.
By the time the appointment was over, C was completely stir-crazy, so while I was juggling my copay and scheduling the next follow-up, I put her on the floor, praying she'd stay by me. Of course, that was a ridiculous notion, and the very first thing she did was walk up to the nearest couple, lean in real close, and start pointing at their phone. Fortunately, they were a very nice couple who assured me she wasn't bothering them and that I could leave her there until I finished my business. As I scooped her up to walk out the door, the woman smiled at me and said, "We'll take her!" I laughed and said, "Well, she's quite the handful." Then the woman shocked me. "Our niece has special needs, and she's just so full of love. That's the great thing about these kids; they're full of love and all they want from you is love."
This was the first time a stranger had commented on C's disabilities, aside from noticing her when she was in her wheelchair. This was the first time someone identified her developmental and cognitive disabilities that wasn't a doctor or a teacher, already familiar with her case. Someone recognized her for who she is.
I really thought I'd be devastated when that day came. I thought I'd run home and mourn the loss of the life I had dreamed for my baby, the anonymity she no longer had, the distinction of being "different" that would now follow her around for the rest of her life. Up until now, people had just assumed she was younger than she is and attributed her behavior to her age. Now, they see it. They get it. The jig's up.
Oddly, instead of being heartbroken, I found myself a little bit... relieved. It's hard to explain, but it was like this weight off my shoulders, this sense that I didn't have to protect her image so much anymore, and this relief that I didn't have to explain away her behavior. That she could be who she is, and I wouldn't have to apologize for it. People would see her and understand. At last.
In the grand scheme of things, it was one tiny moment on one insignificant day... But, for me, it was life-changing. It marked the beginning of a new chapter of life, in which we don't try to hide or mask her disabilities anymore, we don't apologize for them or for her behavior, and we can finally fully accept who she is, because the world sees it now, and the world GETS it. My child has special needs; my child has multiple disabilities; my child is an amazing person who overcomes a lot every day. I will never apologize for that again.
She kept herself busy in the waiting room by throwing her ball around and chasing it, only to throw it again. After a while, she got bored of that game, and she started to notice the other people in the room.... And their smart phones. THAT got her attention! So then, instead of waiting, I was chasing her down and grabbing her as she tried to steal phone after phone, purse after purse... I was relieved when we got called back to see the doc.
By the time the appointment was over, C was completely stir-crazy, so while I was juggling my copay and scheduling the next follow-up, I put her on the floor, praying she'd stay by me. Of course, that was a ridiculous notion, and the very first thing she did was walk up to the nearest couple, lean in real close, and start pointing at their phone. Fortunately, they were a very nice couple who assured me she wasn't bothering them and that I could leave her there until I finished my business. As I scooped her up to walk out the door, the woman smiled at me and said, "We'll take her!" I laughed and said, "Well, she's quite the handful." Then the woman shocked me. "Our niece has special needs, and she's just so full of love. That's the great thing about these kids; they're full of love and all they want from you is love."
This was the first time a stranger had commented on C's disabilities, aside from noticing her when she was in her wheelchair. This was the first time someone identified her developmental and cognitive disabilities that wasn't a doctor or a teacher, already familiar with her case. Someone recognized her for who she is.
I really thought I'd be devastated when that day came. I thought I'd run home and mourn the loss of the life I had dreamed for my baby, the anonymity she no longer had, the distinction of being "different" that would now follow her around for the rest of her life. Up until now, people had just assumed she was younger than she is and attributed her behavior to her age. Now, they see it. They get it. The jig's up.
Oddly, instead of being heartbroken, I found myself a little bit... relieved. It's hard to explain, but it was like this weight off my shoulders, this sense that I didn't have to protect her image so much anymore, and this relief that I didn't have to explain away her behavior. That she could be who she is, and I wouldn't have to apologize for it. People would see her and understand. At last.
In the grand scheme of things, it was one tiny moment on one insignificant day... But, for me, it was life-changing. It marked the beginning of a new chapter of life, in which we don't try to hide or mask her disabilities anymore, we don't apologize for them or for her behavior, and we can finally fully accept who she is, because the world sees it now, and the world GETS it. My child has special needs; my child has multiple disabilities; my child is an amazing person who overcomes a lot every day. I will never apologize for that again.
Sunday, January 29, 2012
Perspective
This week was the first week of classes for the spring semester. I have two hybrid classes that meet Saturdays and online, and one class that meets entirely online. I will spend a total of 5 days on campus this semester, but those will be long (9a-4p) days of intense informational overloading. I will spend, on average, 20-35 hours per week on my computer working on school assignments or reading online information. That's in addition to about 10 hours a week of reading textbooks. Just in case you didn't think being a grad student was a full-time gig, heh. All of that's in addition to 15 hrs/wk of work for my job, and the countless, 'round-the-clock hours spent being a full-time Mom.
Yeah, I'm a busy gal when school's in full swing!
I was originally enrolled to begin classes the summer of 2010, but then I joined up with a local band and realized that one of the gigs on the band calendar directly conflicted with one of my mandatory Saturday classes, and I chose at the time to be in a band rather than be a student.
They say hindsight is 20-20, and now, looking back, I certainly wish I had chosen school over the band. I'd be finishing up this semester or next instead of just now getting to the meat of my Master's program. I'd have spared myself a lot of emotional pain and trauma if I'd gone the student route instead of the rock star route... But, then again, I'd have missed out on a lot of fun times and life-altering experiences. There's nothing quite like pouring your heart out to a roomful of strangers through song or having your name up on a casino marquis as the weekend's main attraction. If I had gone to school when I originally planned instead of trying my hand at the band business, I'd have never known what I was missing. I might have spent the rest of my life wondering... Now, I can say with certainty that I gave it a shot, and it wasn't for me.
Some people are suited for a life on the road, living paycheck to paycheck, feeding on the applause from the crowd and the free meal vouchers given as payment, but I'm much happier being rooted down, spending time with my family, and having a predictable day-to-day routine. I like that I wake up at the same time every day to put C on the bus, then I have each morning's routine, then I greet her bus again at noon. I like having due dates for school assignments, books to read on a predetermined schedule, and regular work to churn out for a paycheck. I LOVE sleeping in my own bed every night instead of shuffling from one hotel room to the next. One important thing to note, however, is that I didn't fully appreciate all of these things until I spent just over a year living an entirely different sort of life. I had to try out both to know without a doubt where I belong. I'm glad I can be so certain now.
This post is titled Perspective, but it's not just about perspective on my career path or the last year and a half. It's also about the perspective I'm given from my classes.
I'm studying to be an Early Childhood Special Educator. That means I'm being educated and trained on any number of disabilities and high-risk situations faced by children from birth through 8 years old. I'm also being educated on how children in this age range typically develop, when not affected by high-risk situations or disabilities. It's all very eye-opening, particularly in regards to my own life.
Having a child with disabilities and complex medical situations can be a real downer sometimes. It's easy to focus on how each day is more challenging or more expensive than it would have been if your child had been lucky enough to be born "typical." It's also easy to trick yourself into thinking you know all there is to know about life with disabilities.
One of the most important things I have learned from my graduate coursework is that I only know one tiny perspective. I know MY situation, but my situation differs greatly from that of every other parent out there, whether their child has any disabilities or medical challenges or not. I will never know what it's like to be the parent of a child with autism, no matter how much I study to better understand it. I will never know what it's like to be the parent of a toddler who is typically developing and going through the "terrible twos," because that wasn't my reality. I will never know what it's like to have a child with a life-threatening condition and live in constant fear that each moment could be the last. (Of course, I say I'll never know these things, but I plan on having one or two more children in the next few years, so maybe I'll get a glimpse into one of those other lives... You never know what life will bring!) I never thought I had all the answers to parenting or to parenting a child with special needs, but my classes are a constant reminder that I really don't even come close to knowing it all. They're a constant reminder that things could have been a lot better, they could have been a lot worse, or they could have just been completely different. My experiences, my challenges, my joys, and my overall perspectives... They're so tiny and isolated and unique. They are mine and mine alone, and they can't be compared to those of anyone else. It's so easy to close your mind to all the other lives around you, all the other ideas and perspectives... But I am fortunate to have regular and eye-opening reminders that my perspective is only one of millions. It's nice to be kept in check, forced to keep an open mind, and constantly challenged to try and see the world through another's eyes.
It's awfully nice to have perspective.
Yeah, I'm a busy gal when school's in full swing!
I was originally enrolled to begin classes the summer of 2010, but then I joined up with a local band and realized that one of the gigs on the band calendar directly conflicted with one of my mandatory Saturday classes, and I chose at the time to be in a band rather than be a student.
They say hindsight is 20-20, and now, looking back, I certainly wish I had chosen school over the band. I'd be finishing up this semester or next instead of just now getting to the meat of my Master's program. I'd have spared myself a lot of emotional pain and trauma if I'd gone the student route instead of the rock star route... But, then again, I'd have missed out on a lot of fun times and life-altering experiences. There's nothing quite like pouring your heart out to a roomful of strangers through song or having your name up on a casino marquis as the weekend's main attraction. If I had gone to school when I originally planned instead of trying my hand at the band business, I'd have never known what I was missing. I might have spent the rest of my life wondering... Now, I can say with certainty that I gave it a shot, and it wasn't for me.
Some people are suited for a life on the road, living paycheck to paycheck, feeding on the applause from the crowd and the free meal vouchers given as payment, but I'm much happier being rooted down, spending time with my family, and having a predictable day-to-day routine. I like that I wake up at the same time every day to put C on the bus, then I have each morning's routine, then I greet her bus again at noon. I like having due dates for school assignments, books to read on a predetermined schedule, and regular work to churn out for a paycheck. I LOVE sleeping in my own bed every night instead of shuffling from one hotel room to the next. One important thing to note, however, is that I didn't fully appreciate all of these things until I spent just over a year living an entirely different sort of life. I had to try out both to know without a doubt where I belong. I'm glad I can be so certain now.
This post is titled Perspective, but it's not just about perspective on my career path or the last year and a half. It's also about the perspective I'm given from my classes.
I'm studying to be an Early Childhood Special Educator. That means I'm being educated and trained on any number of disabilities and high-risk situations faced by children from birth through 8 years old. I'm also being educated on how children in this age range typically develop, when not affected by high-risk situations or disabilities. It's all very eye-opening, particularly in regards to my own life.
Having a child with disabilities and complex medical situations can be a real downer sometimes. It's easy to focus on how each day is more challenging or more expensive than it would have been if your child had been lucky enough to be born "typical." It's also easy to trick yourself into thinking you know all there is to know about life with disabilities.
One of the most important things I have learned from my graduate coursework is that I only know one tiny perspective. I know MY situation, but my situation differs greatly from that of every other parent out there, whether their child has any disabilities or medical challenges or not. I will never know what it's like to be the parent of a child with autism, no matter how much I study to better understand it. I will never know what it's like to be the parent of a toddler who is typically developing and going through the "terrible twos," because that wasn't my reality. I will never know what it's like to have a child with a life-threatening condition and live in constant fear that each moment could be the last. (Of course, I say I'll never know these things, but I plan on having one or two more children in the next few years, so maybe I'll get a glimpse into one of those other lives... You never know what life will bring!) I never thought I had all the answers to parenting or to parenting a child with special needs, but my classes are a constant reminder that I really don't even come close to knowing it all. They're a constant reminder that things could have been a lot better, they could have been a lot worse, or they could have just been completely different. My experiences, my challenges, my joys, and my overall perspectives... They're so tiny and isolated and unique. They are mine and mine alone, and they can't be compared to those of anyone else. It's so easy to close your mind to all the other lives around you, all the other ideas and perspectives... But I am fortunate to have regular and eye-opening reminders that my perspective is only one of millions. It's nice to be kept in check, forced to keep an open mind, and constantly challenged to try and see the world through another's eyes.
It's awfully nice to have perspective.
Wednesday, January 11, 2012
The 2012 IEP
That was an exhausting 90 minutes.
From a special educator's perspective, that was a fantastic IEP meeting. Everyone talked openly about concerns and desires, mutual agreements were reached on goals across all domains, and the child self-entertained quietly throughout the duration of the meeting. Progress has been made and recorded, and goals are set for the new year. What a winning situation!
From a parent's perspective, that was a little bit soul crushing. My 4-year-old (in 10 days) daughter is no longer functioning on a 9-12 month range as she was at this point last year; now she's in the 12-15 month range. She's progressing across all domains, but at an excruciatingly slow rate. There was a lot of discussion about, but very little change to, her goals from last year, because she only met about 50% of them in the last year and some of her previous goals were deemed "too lofty" to maintain for the next year, so they had to be scaled back. Her primary objective for the last year, which was for her to be able to communicate with others, is nowhere near achieved. I can't imagine any possible scenario in which she will be able to enter kindergarten on schedule, and I have no idea what the long-term indications are of her slow progress.
As an educator writing an IEP, you set goals that you believe are attainable within the next year but that will push the child to grow. As a parent, the goals that are set for the next year feel a little bit like a promise. To see it written on paper that "C will kick a ball" in the next year, then to be told a year later that she will not kick in a ball in the NEXT year but will now be working on the smaller task of "stepping over small obstacles" feels like a promise broken. It's no one's fault that C didn't meet her goal, nor is it anyone's fault that she has less than zero interest in kicking balls so that goal had to change, but to have to see it scaled back to a smaller goal for next year after she spent the last year working toward it... Well, it hurts.
I have to focus on the positives. C made progress in all domains. She is now functioning at a higher level than she was a year ago. Her specialists have found that, with loads of repetition, C eventually understands what is expected of her in her school tasks and can complete them with little support, but she needs that initial bombardment of exposure and repetition to have a chance.
Even while focusing on the positives, I am haunted by a voice resonating in the back of my mind: "C is completely unaware of dangerous situations and requires 100% adult supervision in all tasks." The world is a dangerous enough place when you're prepared for it, but my child is fearless. She doesn't feel physical pain. She would happily chase a yellow ball that was rolling into a burning building or walk out in front of a moving vehicle. The world is an especially dangerous place for her, and she requires CONSTANT supervision. I don't know if that will change over time, if she'll learn about life's hidden and not-so-hidden dangers well enough to be able to avoid them. I don't know if she'll have to be supervised for her entire life in order to keep her safe.
The worst thing about the unknowns of C's medical conditions are the uncertainties about long-term implications. No one can tell me what to expect. There are no studies to consult, no statistics to recite, no parenting books from others who have been through it... Because, quite frankly, no one else has been through it. At least, not in any recorded state. My brother and I are medical groundbreakers, with more information on our children's abilities and conditions than even the geneticists have. We're going in blind, our paths lighted only by the unbridled love we feel for our incredibly unique children.
I know now why I was nervous going into today's IEP meeting: I knew what I was going to hear. There weren't going to be any happy surprises. I wasn't going to learn that she was making up for lost time at a spectacular space, or that she secretly could speak and just wasn't doing it at home. I knew progress had been made, but that it was only in baby steps over the past year. And that scares me about what the next year will--or worse, won't--bring.
From a special educator's perspective, that was a fantastic IEP meeting. Everyone talked openly about concerns and desires, mutual agreements were reached on goals across all domains, and the child self-entertained quietly throughout the duration of the meeting. Progress has been made and recorded, and goals are set for the new year. What a winning situation!
From a parent's perspective, that was a little bit soul crushing. My 4-year-old (in 10 days) daughter is no longer functioning on a 9-12 month range as she was at this point last year; now she's in the 12-15 month range. She's progressing across all domains, but at an excruciatingly slow rate. There was a lot of discussion about, but very little change to, her goals from last year, because she only met about 50% of them in the last year and some of her previous goals were deemed "too lofty" to maintain for the next year, so they had to be scaled back. Her primary objective for the last year, which was for her to be able to communicate with others, is nowhere near achieved. I can't imagine any possible scenario in which she will be able to enter kindergarten on schedule, and I have no idea what the long-term indications are of her slow progress.
As an educator writing an IEP, you set goals that you believe are attainable within the next year but that will push the child to grow. As a parent, the goals that are set for the next year feel a little bit like a promise. To see it written on paper that "C will kick a ball" in the next year, then to be told a year later that she will not kick in a ball in the NEXT year but will now be working on the smaller task of "stepping over small obstacles" feels like a promise broken. It's no one's fault that C didn't meet her goal, nor is it anyone's fault that she has less than zero interest in kicking balls so that goal had to change, but to have to see it scaled back to a smaller goal for next year after she spent the last year working toward it... Well, it hurts.
I have to focus on the positives. C made progress in all domains. She is now functioning at a higher level than she was a year ago. Her specialists have found that, with loads of repetition, C eventually understands what is expected of her in her school tasks and can complete them with little support, but she needs that initial bombardment of exposure and repetition to have a chance.
Even while focusing on the positives, I am haunted by a voice resonating in the back of my mind: "C is completely unaware of dangerous situations and requires 100% adult supervision in all tasks." The world is a dangerous enough place when you're prepared for it, but my child is fearless. She doesn't feel physical pain. She would happily chase a yellow ball that was rolling into a burning building or walk out in front of a moving vehicle. The world is an especially dangerous place for her, and she requires CONSTANT supervision. I don't know if that will change over time, if she'll learn about life's hidden and not-so-hidden dangers well enough to be able to avoid them. I don't know if she'll have to be supervised for her entire life in order to keep her safe.
The worst thing about the unknowns of C's medical conditions are the uncertainties about long-term implications. No one can tell me what to expect. There are no studies to consult, no statistics to recite, no parenting books from others who have been through it... Because, quite frankly, no one else has been through it. At least, not in any recorded state. My brother and I are medical groundbreakers, with more information on our children's abilities and conditions than even the geneticists have. We're going in blind, our paths lighted only by the unbridled love we feel for our incredibly unique children.
I know now why I was nervous going into today's IEP meeting: I knew what I was going to hear. There weren't going to be any happy surprises. I wasn't going to learn that she was making up for lost time at a spectacular space, or that she secretly could speak and just wasn't doing it at home. I knew progress had been made, but that it was only in baby steps over the past year. And that scares me about what the next year will--or worse, won't--bring.
Monday, December 12, 2011
Thus Ends the Penny Drama/Growing Up
Well, after several x-rays, a less-than-successful operation, and several enemas, the penny that has haunted me for the past couple of weeks is now out of my life forever! C's x-ray this morning was completely clear of foreign bodies, meaning the penny snuck out in yesterday's diaper (despite my valiant search efforts), and I can finally breathe easily again... Until the next time my darling daughter decides to put something in her mouth!
I took the weekend off... from life. Sure, I did my motherly duties, fed and played with C, but I spent the vast majority of the weekend in my pajamas on the couch watching Criminal Minds and Law & Order: SVU marathons. I love the crime dramas because the bad guys always get caught in the end, and that gives me a warm sense of satisfaction and peace. If only real life worked out that smoothly!
Hubby and I are super excited because C's preschool is hosting a Parents' Night Out tomorrow night. Free babysitting at the school for two hours, long enough for hubby and I to go out to a nice dinner together without worrying about whether C will be quiet and cooperative. Also, I'll get to eat my food without stopping after every bite to give her a bite or to quiet her with a toy. It'll almost be like being a young, childless couple again!
We weren't prepared for parenthood when C came around. She was a happy fluke, and we were incredibly excited when we learned she was on the way, but it wasn't what we had planned. Just a couple of months prior, we had gotten pregnant and miscarried, and we decided at that time that it was for the best, that we needed a couple more years of just being the two of us before we brought in a third party. Well, I blinked twice and was pregnant again. I had planned to have a Master's degree before having a child (as opposed to now, where I'm earning my Master's while parenting full-time), to have a steady job and income, and to have traveled and seen a little bit of the world before settling down. I was a party girl, still into the club scene and bar-hopping with my girlfriends. I was still a kid. Then I was pregnant.
I thought I would be able to hold onto my youth after she was born, but then the diagnoses started rolling in, and I spent the first year and half of her life in hospitals and doctors' offices, getting bad news and then worse, facing crisis after crisis, surgery after surgery... And that ages you pretty quickly. By the time C was medically stable and I had enough time to do anything other than see another doctor, I had grown up. Too quickly, of course (isn't that always the case?).
I don't regret one moment of it. The beginning was tough, but I always got through by holding my baby in my arms and looking into her beautiful face. I miss being young, feeling young... I mean, it's not like I'm old and wrinkled now (although I do have some worry lines on my forehead, brought about by tough years of medical uncertainty), but I don't feel as vibrant and energetic as I did when I got married. I used to go out every night, and now I'm happy to curl up in pajamas under my electric blanket and watch tv in the evenings. I regained a little bit of that youthful energy while I was singing with the band, but at the cost of time with my family and an education that I earnestly wanted... Not the best trade-off.
I don't know if I've completely resigned myself to growing up yet. I still cling to certain things that make me feel young and carefree, such as dying my hair drastic colors or getting pierced or tattooed... I still want to go skydiving again, and I'm determined to go skiing one of these seasons, when I can find someone to watch C. Someday, I'll get to visit London and Germany and Ireland. Someday, I'll star in another musical or sing on a stage in front of a packed house again. I still have plenty of time to be young, to have fun, to be a little bit crazy, even. I just have to find myself a babysitter first. ;)
I took the weekend off... from life. Sure, I did my motherly duties, fed and played with C, but I spent the vast majority of the weekend in my pajamas on the couch watching Criminal Minds and Law & Order: SVU marathons. I love the crime dramas because the bad guys always get caught in the end, and that gives me a warm sense of satisfaction and peace. If only real life worked out that smoothly!
Hubby and I are super excited because C's preschool is hosting a Parents' Night Out tomorrow night. Free babysitting at the school for two hours, long enough for hubby and I to go out to a nice dinner together without worrying about whether C will be quiet and cooperative. Also, I'll get to eat my food without stopping after every bite to give her a bite or to quiet her with a toy. It'll almost be like being a young, childless couple again!
We weren't prepared for parenthood when C came around. She was a happy fluke, and we were incredibly excited when we learned she was on the way, but it wasn't what we had planned. Just a couple of months prior, we had gotten pregnant and miscarried, and we decided at that time that it was for the best, that we needed a couple more years of just being the two of us before we brought in a third party. Well, I blinked twice and was pregnant again. I had planned to have a Master's degree before having a child (as opposed to now, where I'm earning my Master's while parenting full-time), to have a steady job and income, and to have traveled and seen a little bit of the world before settling down. I was a party girl, still into the club scene and bar-hopping with my girlfriends. I was still a kid. Then I was pregnant.
I thought I would be able to hold onto my youth after she was born, but then the diagnoses started rolling in, and I spent the first year and half of her life in hospitals and doctors' offices, getting bad news and then worse, facing crisis after crisis, surgery after surgery... And that ages you pretty quickly. By the time C was medically stable and I had enough time to do anything other than see another doctor, I had grown up. Too quickly, of course (isn't that always the case?).
I don't regret one moment of it. The beginning was tough, but I always got through by holding my baby in my arms and looking into her beautiful face. I miss being young, feeling young... I mean, it's not like I'm old and wrinkled now (although I do have some worry lines on my forehead, brought about by tough years of medical uncertainty), but I don't feel as vibrant and energetic as I did when I got married. I used to go out every night, and now I'm happy to curl up in pajamas under my electric blanket and watch tv in the evenings. I regained a little bit of that youthful energy while I was singing with the band, but at the cost of time with my family and an education that I earnestly wanted... Not the best trade-off.
I don't know if I've completely resigned myself to growing up yet. I still cling to certain things that make me feel young and carefree, such as dying my hair drastic colors or getting pierced or tattooed... I still want to go skydiving again, and I'm determined to go skiing one of these seasons, when I can find someone to watch C. Someday, I'll get to visit London and Germany and Ireland. Someday, I'll star in another musical or sing on a stage in front of a packed house again. I still have plenty of time to be young, to have fun, to be a little bit crazy, even. I just have to find myself a babysitter first. ;)
Thursday, December 8, 2011
When the Dust Settles
Hours after the fact, knowing full well she wouldn't understand a word of it, I walked into C's room and I apologized. I apologized for yelling at her, I told her that she was perfect, that I had been in pain and took it out on her, that it wasn't fair, and that I was sorry. I told her that I loved her more than anything in the world.
Again, she didn't understand a word that I said. That doesn't matter. What matters is what she DID understand: she understood that I'm her mommy, that I love her, that I came into her room and held her and read her a book and turned on the light so it wouldn't get too dark in there. She knows that I love her, and she feels that love every day. She understands that.
I feel better now.
Again, she didn't understand a word that I said. That doesn't matter. What matters is what she DID understand: she understood that I'm her mommy, that I love her, that I came into her room and held her and read her a book and turned on the light so it wouldn't get too dark in there. She knows that I love her, and she feels that love every day. She understands that.
I feel better now.
Outburst
I started the morning with a painful drilling of my tooth. I blacked out at the gym. My tooth still hurt. My arms were sore from the workout, and she was arching and twisting in ways that caused severe pain. I was stressed. I was in a hurry to get out of there. People were looking. She wouldn't stop. It was the same thing over and over and over again...
It was a hundred tiny things that bubbled up at the same time into one outburst. One moment of sheer frustration, one yelled "No!" at my child. My child who didn't stop when she heard me yell, who didn't even react, for that matter. My child who didn't understand that Mommy was in pain or that she shouldn't be grabbing bags of chips off the rack or that she was making the simple task of buying sandwiches more difficult. My child, who didn't understand that she was doing a single thing wrong, who was only aware that there was something exciting in front of her, and she could reach out and grasp it, and so she was doing so with great delight.
I yelled at my child today. Because I was frustrated. Because I was in pain. Because, sometimes, that's what we do as parents. We snap and we scold our children a little too loudly, even though they don't understand a single thing that's happening in that moment and couldn't possibly grasp the meaning of your shout.
I am not at all proud today. I know better, but I feel like a lousy parent. I mean, I'm studying Early Childhood Special Education. I have made a choice to devote my LIFE to children who will be difficult to handle at times and who won't always understand me. I should be more patient, right? More understanding? More selfless?
I'm the mother of a child with special needs. I should be perfect, shouldn't I?
Each of us knows that it's a ridiculous notion. There is no such thing as the perfect parent. There isn't a person alive who NEVER loses their cool for an instant here and there. Especially parents of children who don't fit the mold... We know better than anyone, don't we, that sometimes you just get fed up? Tired? Stressed?
It's completely forgivable. It's understandable. It's HUMAN.
And yet... None of that stops me from beating myself up over it. I yelled at my child today. My beautiful, perfect little girl who didn't understand a single thing that was going on in that moment. My angel, who kept right on grabbing those bags of chips after I yelled because she didn't understand that no means no or that Mommy was frustrated or that anything at all was out of the ordinary.
I am not a bad parent for yelling "No!" at my child. I know this, and tomorrow, it won't be weighing on my mind and on my heart... But today, I'm having a really hard time being okay with this. Today, I feel like I failed her.
Just goes to show you, every day is a struggle, but, in the end, we endure for these amazing kids.
It was a hundred tiny things that bubbled up at the same time into one outburst. One moment of sheer frustration, one yelled "No!" at my child. My child who didn't stop when she heard me yell, who didn't even react, for that matter. My child who didn't understand that Mommy was in pain or that she shouldn't be grabbing bags of chips off the rack or that she was making the simple task of buying sandwiches more difficult. My child, who didn't understand that she was doing a single thing wrong, who was only aware that there was something exciting in front of her, and she could reach out and grasp it, and so she was doing so with great delight.
I yelled at my child today. Because I was frustrated. Because I was in pain. Because, sometimes, that's what we do as parents. We snap and we scold our children a little too loudly, even though they don't understand a single thing that's happening in that moment and couldn't possibly grasp the meaning of your shout.
I am not at all proud today. I know better, but I feel like a lousy parent. I mean, I'm studying Early Childhood Special Education. I have made a choice to devote my LIFE to children who will be difficult to handle at times and who won't always understand me. I should be more patient, right? More understanding? More selfless?
I'm the mother of a child with special needs. I should be perfect, shouldn't I?
Each of us knows that it's a ridiculous notion. There is no such thing as the perfect parent. There isn't a person alive who NEVER loses their cool for an instant here and there. Especially parents of children who don't fit the mold... We know better than anyone, don't we, that sometimes you just get fed up? Tired? Stressed?
It's completely forgivable. It's understandable. It's HUMAN.
And yet... None of that stops me from beating myself up over it. I yelled at my child today. My beautiful, perfect little girl who didn't understand a single thing that was going on in that moment. My angel, who kept right on grabbing those bags of chips after I yelled because she didn't understand that no means no or that Mommy was frustrated or that anything at all was out of the ordinary.
I am not a bad parent for yelling "No!" at my child. I know this, and tomorrow, it won't be weighing on my mind and on my heart... But today, I'm having a really hard time being okay with this. Today, I feel like I failed her.
Just goes to show you, every day is a struggle, but, in the end, we endure for these amazing kids.
Tuesday, December 6, 2011
So, Yesterday Pretty Much Sucked...
Seriously, I can't remember any day as hard, aside from C's first two surgeries, which were both major surgeries that lasted a long time, and holding myself together in the surgical waiting area for hours seemed nigh impossible. Once again, though, I pulled through, C pulled through with flying colors (this is why I call her a warrior!), and the emergencies have all passed.
Miraculously, although I was on the verge several times, I didn't shed a single tear during or after my crazy day. I wanted to cry when I left my husband to fend for himself at Urgent Care, and again when I found out they were sending him to the ER. I wanted to cry when they told me that C's coin could have ruptured her GI tract and might leave a hole in her esophagus, and again when the surgery took twice as long as the time they quoted me and I still hadn't heard anything.
The hardest part for me was being so torn between the need to be there for my daughter in one city and the need to be there for my husband in another, and having to choose between the two. I just wish the crises had occurred just one day apart so I could have done right by both of them. Instead, I took care of my daughter and left hubby to fend for himself, which was the right choice, but which still felt like choosing one love over another... Which broke my heart.
At 9:00, they told us we'd be staying the night in the hospital. At 9:30, they said it would depend on how well C tolerated liquids. By 10:20, we were on our way home. Mind you, my day started with an x-ray order picked up at 9:00 and an x-ray performed at 9:30. I was on high alert ALL DAY LONG, over 12 hours. I got through it by texting hubby frequently to give him updates and get updates on his medical situation, calling my mom a couple of times, and texting/talking to one of my very best friends in OK, who somehow manages to be the calming spirit in my chaotic life from thousands of miles away. Bless her for being her! I didn't have a single anxiety pill all day. I suppose I could have asked for one at the hospital, but it never even occurred to me... And now I'm proud of myself for staying strong through a whole mess of a day without any meds. Bonus points for me!
C is back at school today, and hubby is back at work. It's almost as if yesterday never happened. The only lingering effect is that I had one hellish nightmare that I'm having trouble shaking this morning (it feels like real memories instead of a dream), but that's fading as the clock ticks on. It was clearly just a manifestation of all of yesterday's anxiety into a horrible people-killing-each-other dream.
I found a LOT of encouragement and support from Twitter yesterday. I was posting to keep my mind and fingers occupied during the long waits, and I was surprised at how many people sent prayers and kind thoughts out to a complete stranger who was having a rough day. It reminded me about the good side of the internet, the companionship and support and help that are out there amidst the scams and porn and shopping sites. It reminded me of the wonderful people of the world, and made me grateful that they're out there and haven't been beaten down by the horrible people. It helped a lot.
Now, I move forward with life. Yesterday, awful as it was, is over and behind me, and there are no lasting crises. I get to move back into my role as wife and mother without all the hysteria and medical questions thrown my way. Yesterday, I felt like my family was fractured and in peril. Today, we are whole and safe again.
Miraculously, although I was on the verge several times, I didn't shed a single tear during or after my crazy day. I wanted to cry when I left my husband to fend for himself at Urgent Care, and again when I found out they were sending him to the ER. I wanted to cry when they told me that C's coin could have ruptured her GI tract and might leave a hole in her esophagus, and again when the surgery took twice as long as the time they quoted me and I still hadn't heard anything.
The hardest part for me was being so torn between the need to be there for my daughter in one city and the need to be there for my husband in another, and having to choose between the two. I just wish the crises had occurred just one day apart so I could have done right by both of them. Instead, I took care of my daughter and left hubby to fend for himself, which was the right choice, but which still felt like choosing one love over another... Which broke my heart.
At 9:00, they told us we'd be staying the night in the hospital. At 9:30, they said it would depend on how well C tolerated liquids. By 10:20, we were on our way home. Mind you, my day started with an x-ray order picked up at 9:00 and an x-ray performed at 9:30. I was on high alert ALL DAY LONG, over 12 hours. I got through it by texting hubby frequently to give him updates and get updates on his medical situation, calling my mom a couple of times, and texting/talking to one of my very best friends in OK, who somehow manages to be the calming spirit in my chaotic life from thousands of miles away. Bless her for being her! I didn't have a single anxiety pill all day. I suppose I could have asked for one at the hospital, but it never even occurred to me... And now I'm proud of myself for staying strong through a whole mess of a day without any meds. Bonus points for me!
C is back at school today, and hubby is back at work. It's almost as if yesterday never happened. The only lingering effect is that I had one hellish nightmare that I'm having trouble shaking this morning (it feels like real memories instead of a dream), but that's fading as the clock ticks on. It was clearly just a manifestation of all of yesterday's anxiety into a horrible people-killing-each-other dream.
I found a LOT of encouragement and support from Twitter yesterday. I was posting to keep my mind and fingers occupied during the long waits, and I was surprised at how many people sent prayers and kind thoughts out to a complete stranger who was having a rough day. It reminded me about the good side of the internet, the companionship and support and help that are out there amidst the scams and porn and shopping sites. It reminded me of the wonderful people of the world, and made me grateful that they're out there and haven't been beaten down by the horrible people. It helped a lot.
Now, I move forward with life. Yesterday, awful as it was, is over and behind me, and there are no lasting crises. I get to move back into my role as wife and mother without all the hysteria and medical questions thrown my way. Yesterday, I felt like my family was fractured and in peril. Today, we are whole and safe again.
Monday, December 5, 2011
Crises Abound!
I am writing this from Renown Hospital in Reno, where C is being admitted for an emergent surgery, scheduled 30 minutes ago, to remove a coin that has been lodged in her throat for at least two weeks. I spent all morning at the hospital at home waiting for it to get lined up, was sent home to wait, and found out five minutes after I got home that hubby needed a ride to Urgent Care. I was in the waiting room with him when I got the call to drive to Reno. Just after I left, Urgent Care sent him to the ER. Why do they both have to need me at the same time? Couldn't just one of these emergencies have come tomorrow so I can be there for both of my loves? I had to act too fast to think to grab an anxiety pill, so I'm left to get through both situations all on my own. Today is not one of the easy days. Wait... Have I ever had a truly easy day?
Sunday, December 4, 2011
The One Where C Gets a Cold
C never gets sick. I mean, like, NEVER... But, for the past few days, she's been battling a cold. It was just a runny nose at first, but now it's crud in her chest with a little cough and massive running of the nose. Really, it's beyond disgusting. She's an oozeling.
So, following my best Mommy Instincts, I am keeping her home from school tomorrow in hopes of giving her a day to rest up. Of course, we'll have to leave to go get her follow-up X-rays to find out if there is, in fact, a round metal object stuck in her throat... And whether or not she rests is completely up to her, as that child CANNOT be forced or tricked or lulled to sleep. She sleeps when she's damned good and ready for it, and no time else. All I can do is turn off the lights to minimize distractions, give her a bottle so her tummy will be full, cross my fingers, and hope for the best.
Of course, keeping her home means I had to cancel my workout with my trainer, but that can be easily rescheduled. It also means getting her X-rayed earlier in the day, which *might* mean getting an answer back by the end of the day as to whether we need to intervene on this coin or whatever the last X-ray showed in her throat...
...So maybe she won't be getting any extra rest, just a little less excitement than school offers up to her. =/
Still, at least this way, she doesn't get any of the other kids (or teachers!) sick. Poor kid... She never gets sick, but when she does, she's just plain miserable. :(
So, following my best Mommy Instincts, I am keeping her home from school tomorrow in hopes of giving her a day to rest up. Of course, we'll have to leave to go get her follow-up X-rays to find out if there is, in fact, a round metal object stuck in her throat... And whether or not she rests is completely up to her, as that child CANNOT be forced or tricked or lulled to sleep. She sleeps when she's damned good and ready for it, and no time else. All I can do is turn off the lights to minimize distractions, give her a bottle so her tummy will be full, cross my fingers, and hope for the best.
Of course, keeping her home means I had to cancel my workout with my trainer, but that can be easily rescheduled. It also means getting her X-rayed earlier in the day, which *might* mean getting an answer back by the end of the day as to whether we need to intervene on this coin or whatever the last X-ray showed in her throat...
...So maybe she won't be getting any extra rest, just a little less excitement than school offers up to her. =/
Still, at least this way, she doesn't get any of the other kids (or teachers!) sick. Poor kid... She never gets sick, but when she does, she's just plain miserable. :(
Wednesday, November 30, 2011
Inadequate
Some days (most days?), I feel inadequate as a mother. Here I have this amazing little girl who needs so much from me, and I always feel like I'm coming up short. Am I her therapist or her mother? There simply aren't enough hours in the day to work, take care of school stuff, clean the house, cook dinner, and take care of her every need... So sometimes I skip out on one the therapeutic activities I had planned, or I let her play in her room alone too long while I write a paper instead of playing with her, or I can't do much more than feed and diaper her because my head and my emotions are in too much turmoil, and I can't function at a higher level.
C's overall "umbrella" problem is that she has an unbalanced translocation of chromosomes 7 and 8. She has a partial trisomy (extra material) of 8, and she's missing genes on 7 that are crucial in spine and brain development. Because of that tiny little chromosomal mix-up, she has a whole slew of medical problems encompassing every major system in her body, and those have resulted in physical and developmental disabilities. There is no name for this particular genetic anomaly because it's incredibly rare--something like 15 recorded cases in all of recorded medical history, and 4 of them are in my family. I was told by doctors that there was no way I could be carrying the anomaly that my older brother carries, and yet, after C was born, BAM! Reality smacked us in the face. I had defied all odds and brought into the world a little girl whose chromosomes are all out of whack, and we have no idea what to expect from that, medically or developmentally.
In short, it's MY FAULT that my daughter has disabilities. MY chromosomes were the ones that were screwed up and passed on this anomaly. It wasn't just this pregnancy, it was the two pregnancies that miscarried (presumably because they were missing a huge chunk of genetic material), and it's 75% of any pregnancy I could conceivably carry. I didn't choose to carry this or to pass it on, but it's really hard not to feel responsible when it was your body, as a mother, that failed your child. Then there are the added bonuses like C's bilateral colobomas, which happened during fetal development and don't appear to be linked to the chromosomal situation. Just a fluke because, yet again, my body failed her.
Being bipolar is a daily struggle. With the right combination of medications, you can go days or weeks without even remembering your diagnosis, but then a day comes along where you're just disproportionately sad for no reason, or you have a manic episode and spend too much money and can't sleep and talk too fast because your brain won't slow down. Those days, it feels impossible to keep your head above water, much less take care of a completely dependent young child. The PTSD hits even harder, hurling me into flashbacks or keeping me up all night with night terrors, leaving me walking around in a raw emotional state and a complete mental haze. I just pray that my screwed up body didn't pass along the mental illness along with the crummy chromosomes. I wouldn't be able to take knowing that she suffered emotionally in addition to the many other challenges she faces.
Then there's the anxiety. I know I have to be her strongest advocate in healthcare and education, but it's tough to be assertive when calling a doctor's office triggers a mild panic attack and pushing people has never been your forte. When people aren't cooperative in getting my daughter what she needs, I have to fight every instinct in my body and, against my nature, insist that they listen to me and take care of my daughter. I have to hold my breath and pray sometimes that they won't see me shaking, because I have to appear calm and tough when fighting for her. It's really difficult!
She's an awesome kid, and I love her with all my heart. I treasure her every action and sound, and I melt when I watch her sleep and listen to her slow, steady breathing. She is my baby, the love of my life, my world... But sometimes the outside world steps in and makes showing C what she means to me a nearly impossible task. I don't want her growing up with a mother who is sometimes emotionally vacant or distant. I want her to feel loved at all times and to know she can count on me for anything and everything. But can she? I doubt my abilities as a parent, because I made her this way and can't fix her, and because I'm struggling with so much of my own, it's more difficult to be the mom that she needs. Of course, her needs always come first... But sometimes, I just feel I don't have enough to give. Sometimes, I feel like I'm failing... And that's a tough burden to carry.
C's overall "umbrella" problem is that she has an unbalanced translocation of chromosomes 7 and 8. She has a partial trisomy (extra material) of 8, and she's missing genes on 7 that are crucial in spine and brain development. Because of that tiny little chromosomal mix-up, she has a whole slew of medical problems encompassing every major system in her body, and those have resulted in physical and developmental disabilities. There is no name for this particular genetic anomaly because it's incredibly rare--something like 15 recorded cases in all of recorded medical history, and 4 of them are in my family. I was told by doctors that there was no way I could be carrying the anomaly that my older brother carries, and yet, after C was born, BAM! Reality smacked us in the face. I had defied all odds and brought into the world a little girl whose chromosomes are all out of whack, and we have no idea what to expect from that, medically or developmentally.
In short, it's MY FAULT that my daughter has disabilities. MY chromosomes were the ones that were screwed up and passed on this anomaly. It wasn't just this pregnancy, it was the two pregnancies that miscarried (presumably because they were missing a huge chunk of genetic material), and it's 75% of any pregnancy I could conceivably carry. I didn't choose to carry this or to pass it on, but it's really hard not to feel responsible when it was your body, as a mother, that failed your child. Then there are the added bonuses like C's bilateral colobomas, which happened during fetal development and don't appear to be linked to the chromosomal situation. Just a fluke because, yet again, my body failed her.
Being bipolar is a daily struggle. With the right combination of medications, you can go days or weeks without even remembering your diagnosis, but then a day comes along where you're just disproportionately sad for no reason, or you have a manic episode and spend too much money and can't sleep and talk too fast because your brain won't slow down. Those days, it feels impossible to keep your head above water, much less take care of a completely dependent young child. The PTSD hits even harder, hurling me into flashbacks or keeping me up all night with night terrors, leaving me walking around in a raw emotional state and a complete mental haze. I just pray that my screwed up body didn't pass along the mental illness along with the crummy chromosomes. I wouldn't be able to take knowing that she suffered emotionally in addition to the many other challenges she faces.
Then there's the anxiety. I know I have to be her strongest advocate in healthcare and education, but it's tough to be assertive when calling a doctor's office triggers a mild panic attack and pushing people has never been your forte. When people aren't cooperative in getting my daughter what she needs, I have to fight every instinct in my body and, against my nature, insist that they listen to me and take care of my daughter. I have to hold my breath and pray sometimes that they won't see me shaking, because I have to appear calm and tough when fighting for her. It's really difficult!
She's an awesome kid, and I love her with all my heart. I treasure her every action and sound, and I melt when I watch her sleep and listen to her slow, steady breathing. She is my baby, the love of my life, my world... But sometimes the outside world steps in and makes showing C what she means to me a nearly impossible task. I don't want her growing up with a mother who is sometimes emotionally vacant or distant. I want her to feel loved at all times and to know she can count on me for anything and everything. But can she? I doubt my abilities as a parent, because I made her this way and can't fix her, and because I'm struggling with so much of my own, it's more difficult to be the mom that she needs. Of course, her needs always come first... But sometimes, I just feel I don't have enough to give. Sometimes, I feel like I'm failing... And that's a tough burden to carry.
Monday, November 28, 2011
Back on Track!
Well, the holiday long weekend is officially over, C is on the bus on her way to school, and I've got an appointment with my trainer in just under two hours. I have to clean and vacuum two rooms before C gets home (asleep) at noon so the steam cleaners can clean those rooms (a little gift from the hubby!). I also have a paper to write and an online final to take by Wednesday. /whew! Life is always just a little bit hectic around here. :)
I am eating nothing but Nutrisystem today, because I need to get back on the dieting wagon ASAP if I'm gonna look good by the time I go home for Christmas in 3 weeks! Going home means running into old high school acquaintances at restaurants and stores and clubs, which means being sized up to see who's got the better life, the better figure, and the better clothes now. Well, I'm going to lose the clothing competition hands-down, and those who don't know better will think my life isn't perfect because my daughter has special needs (how very wrong they are!), so I really have to fight on the superficial front and at least have the better figure! ;)
I'm nervous because my therapist hasn't called me back since the insurance company limited my visits to 3, so I don't know yet if we can start up with my EMDR, which I desperately need. I feel pushed aside and insignificant because he couldn't even be bothered to return my call and say, "We'll work something out." It's been nearly two weeks, and I just haven't heard a word from him. I'm a little angry. I feel marginalized. He's supposed to be on my side, supposed to be helping me limp through recovering from my PTSD, and he can't even make a phone call when I'm in crisis? That's just not cool... But I'm not writing him off yet. I need his expertise and experience too much, and he may have worked some insurance magic behind the scenes that I just don't know about yet. We'll find out about that at tomorrow's appointment. I won't have to fret much longer.
This was a great weekend for me on Twitter. I found a whole bunch of great new people to follow, and I have several new followers, myself. I'm building a network of people who have experiences with special needs, particularly autism (I am LOVING the autism crowd!), parenting, and teaching. I view these people as companions, peers, and resources... I am learning so much about parenting a child with autism, which will help me teach children with ASD in a few years when I'm finished with school, and it helps me parent my own little girl, who doesn't have ASD but isn't NT, either. I am meeting people whose lives are as hectic and emotionally challenging as mine is--people who GET IT. And then, on top of it all, I'm meeting other teachers who can help give me tips as I enter the world of Special Education. All of this is huge for me, but I appreciate the companionship most. It's a lonely, isolating world when your child isn't typically developing, and it's that much lonelier without people on your side who have been there and know what you're experiencing. Invaluable.
It's Cyber Monday, so I should stay off the computer as much as possible today. I am completely out of money and can't afford to get sucked in by the online specials! Boot Barn and Kohl's have been bombarding me with emails, and I'm more than a little tempted...! Excessive shopping can be a symptom of a manic episode, and those often end in me spending ~$4000 I don't have, so I have to sit back, relax, take deep breaths, and try to keep my mouse away from the Add To Cart buttons so I don't put myself in financial trouble. Ahh, the joys of being bipolar!
Alright, time to eat some Nutrisystem breakfast and hop in the shower. After all, it's just rude to show up at the gym smelly--you're supposed to at least start out smelling fresh! ;)
I am eating nothing but Nutrisystem today, because I need to get back on the dieting wagon ASAP if I'm gonna look good by the time I go home for Christmas in 3 weeks! Going home means running into old high school acquaintances at restaurants and stores and clubs, which means being sized up to see who's got the better life, the better figure, and the better clothes now. Well, I'm going to lose the clothing competition hands-down, and those who don't know better will think my life isn't perfect because my daughter has special needs (how very wrong they are!), so I really have to fight on the superficial front and at least have the better figure! ;)
I'm nervous because my therapist hasn't called me back since the insurance company limited my visits to 3, so I don't know yet if we can start up with my EMDR, which I desperately need. I feel pushed aside and insignificant because he couldn't even be bothered to return my call and say, "We'll work something out." It's been nearly two weeks, and I just haven't heard a word from him. I'm a little angry. I feel marginalized. He's supposed to be on my side, supposed to be helping me limp through recovering from my PTSD, and he can't even make a phone call when I'm in crisis? That's just not cool... But I'm not writing him off yet. I need his expertise and experience too much, and he may have worked some insurance magic behind the scenes that I just don't know about yet. We'll find out about that at tomorrow's appointment. I won't have to fret much longer.
This was a great weekend for me on Twitter. I found a whole bunch of great new people to follow, and I have several new followers, myself. I'm building a network of people who have experiences with special needs, particularly autism (I am LOVING the autism crowd!), parenting, and teaching. I view these people as companions, peers, and resources... I am learning so much about parenting a child with autism, which will help me teach children with ASD in a few years when I'm finished with school, and it helps me parent my own little girl, who doesn't have ASD but isn't NT, either. I am meeting people whose lives are as hectic and emotionally challenging as mine is--people who GET IT. And then, on top of it all, I'm meeting other teachers who can help give me tips as I enter the world of Special Education. All of this is huge for me, but I appreciate the companionship most. It's a lonely, isolating world when your child isn't typically developing, and it's that much lonelier without people on your side who have been there and know what you're experiencing. Invaluable.
It's Cyber Monday, so I should stay off the computer as much as possible today. I am completely out of money and can't afford to get sucked in by the online specials! Boot Barn and Kohl's have been bombarding me with emails, and I'm more than a little tempted...! Excessive shopping can be a symptom of a manic episode, and those often end in me spending ~$4000 I don't have, so I have to sit back, relax, take deep breaths, and try to keep my mouse away from the Add To Cart buttons so I don't put myself in financial trouble. Ahh, the joys of being bipolar!
Alright, time to eat some Nutrisystem breakfast and hop in the shower. After all, it's just rude to show up at the gym smelly--you're supposed to at least start out smelling fresh! ;)
Saturday, November 26, 2011
I stumbled onto this old post from my retired blog...
It was written 3 years ago, but it still speaks to me. Of course, things have changed since I wrote it. C's medical issues are just part of everyday life, not the constant struggle they used to be... The death of my niece Rebecca seems like a lifetime ago, and while it still makes me sad, it doesn't eat away at me anymore. And I've returned to a heavily medicated state to control my moods and help me be the best wife and mother that I can be. Still, though.... It's good to remember where we started, to look back and see how far we've come....
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It's just hard right now. I have to keep acknowledging that it's hard, which I hate, and reminding myself that it's *okay* that it's hard right now. I shouldn't be fine with everything--not yet. It's normal to be hurting. Healthy, even.
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It's just hard right now. I have to keep acknowledging that it's hard, which I hate, and reminding myself that it's *okay* that it's hard right now. I shouldn't be fine with everything--not yet. It's normal to be hurting. Healthy, even.
I don't know why I felt such a connection with Rebecca. I can't explain it; it was just something that was THERE, that was a part of me. Losing her, particularly before I got a chance to meet her, hurt me in a very real and deep way. Mom described it as still being "raw," and I guess she's right. It is. The slightest touch in that area stings and burns like a bitch, and it leaves a resounding dull ache that can last for hours.
Ceili can't see. I mean, she sees SOME, but I lose hope that she'll see very much. Or maybe it's not hope I'm losing; maybe I'm just moving past the denial. In any event, it SUCKS, and it breaks my heart, and I wish I could do something--ANYTHING--to change it. Same with everything else. Her chromosomes: can't I just go in and delete that extra material? Undo that little glitch in her development? I don't have high hopes after her MRI and xrays today; something about the shift in the xray tech's demeanor between when we walked in the room for the scans and when we left ten minutes later tells me he didn't see the kinds of things we had wanted him to see (or, rather, that he saw the kinds of things we didn't want him to see).
I'm feeling like a failure. Like a failure as a mother, because my body couldn't produce a healthy little girl, and because I can't have any more children without significant medical intervention to ensure that they're free of this anomaly. Failure as a wife, because I couldn't give my husband a healthy baby, and I can't give him more babies without said intervention. Failure as a woman? I don't know. I know better, but I just can't shake the sense that this is ALL MY FAULT. Perhaps Asher would have been better off with someone else who could give him healthy babies the old-fashioned, normal way. But then Ceili wouldn't have been born, and even if she isn't the typical picture of a "normal" baby, she's still beautiful and incredible, and I'm eternally grateful that she came into this world.
I'm having a hard time talking to Asher about this stuff. It seems the moment it comes up, I either start to cry or begin making inappropriate jokes about it, neither of which is particularly conducive to a constructive, healthy discussion of it all. I'm clearly just not coping with it yet.
I wake up. I feed Ceili, I change her, I schedule her doctors' appointments, I play with her, I love on her, I put her to sleep at night... I do everything she needs me to do. That's what keeps me going, what maintains some illusion of normalcy in my life. It's easy to appear strong and composed when I cannot do otherwise and still care for her properly. That doesn't make me FEEL any more strong or composed, though.
I feel lost. Frightened. Devastated. Ashamed. Guilty, hopeless, angry... A million other adjectives, all negative.
Through it all, though, I am reminded constantly of the depth of my love for Asher and Ceili. They bring such joy into my life, peace and comfort and light. They make the world a beautiful and glorious place, even though my little corner of it seems so dark and dreary right now.
I still have trouble understanding how I "landed" a man like Asher. He is brilliant, kind, and a rock. He holds me up when I feel like I can't bear my own weight. I only wish I could turn to him more right now. I seem to be stuck in this middle ground between trying to look to him for comfort and trying to offer him some comfort. I don't want to lean too much, because he has his own share of the weight to shoulder through all of this. I don't want to cry too much or seem to weak or frightened because I don't want to complicate his end of things any. At the same time, I don't want to distance myself so much that he can't lean on me a little....
I don't know. I don't know what I'm feeling or what I'm trying to say... I don't know how to handle all of this. I also know that it doesn't matter if I know how to; I have no choice BUT to handle it. So I will. I will do everything I have to do for Ceili, for Asher, for my marriage and for my family.... And I will continue to treasure the incredible man I married, and I will continue to be amazed by this beautiful child we created. I will continue to find happiness where I can, and hopefully someday soon, I'll be able to smile without it feeling forced. I'll be able to talk about Rebecca and about Ceili's medical issues without fighting back tears or feeling my throat close up on me.
I just wish I could do more. Be more. For Asher, for Ceili, and for myself.
This was not the way I imagined our life with a baby. I never thought she wouldn't be healthy or that there wouldn't be more "happy accidents" in our lifetime.
On the other hand, I never thought I would love these two so much that it could actually overpower the mood swings and keep me stable without medication. At least I can hold onto that and find true, easy happiness--no forced smiles there.
A Kid-Free Anniversary
The hubby and I got married on New Year's Eve. This year will mark our fifth anniversary. We got married in Austin (where my parents live), and we spent our first married night at the Hyatt Regency on Town (now Lady Bird) Lake, where we watched the fireworks over the lake from our beautiful hotel room.
This year, we're going to Austin for Christmas, and my mom suggested that we stay through our anniversary. She volunteered to watch C for the night so that we could go stay at the same hotel where we spent our first married night, in a room with a river view, where we can relax and enjoy a kid-free anniversary and watch the fireworks over the lake.
This is why my mom is awesome. Also because the hotel wasn't accepting reservations from non-preferred customers (they had booked all their regular people rooms), but she not only got us a reservation; she spent a week calling to try and get us the very same room where we stayed on our wedding night. My mom is really and truly fantastic.
I'm looking forward to a night with my husband without the kiddo. I'm thinking a fancy dinner at a restaurant where we could never take our often-noisy and ever-destructive offspring, and a quiet night with a bottle of champagne in the room to ring in the new year.
New Year's Day just also happens to be my wonderful husband's birthday, so we'll get to sleep in, maybe get room service for a birthday breakfast in bed, and start the day without any stress, knowing our daughter is in good hands while we take a short time-out from parenting. I am very much looking forward to our kid-free anniversary, because who knows when (if ever) we'll have this sort of opportunity again?
This year, we're going to Austin for Christmas, and my mom suggested that we stay through our anniversary. She volunteered to watch C for the night so that we could go stay at the same hotel where we spent our first married night, in a room with a river view, where we can relax and enjoy a kid-free anniversary and watch the fireworks over the lake.
This is why my mom is awesome. Also because the hotel wasn't accepting reservations from non-preferred customers (they had booked all their regular people rooms), but she not only got us a reservation; she spent a week calling to try and get us the very same room where we stayed on our wedding night. My mom is really and truly fantastic.
I'm looking forward to a night with my husband without the kiddo. I'm thinking a fancy dinner at a restaurant where we could never take our often-noisy and ever-destructive offspring, and a quiet night with a bottle of champagne in the room to ring in the new year.
New Year's Day just also happens to be my wonderful husband's birthday, so we'll get to sleep in, maybe get room service for a birthday breakfast in bed, and start the day without any stress, knowing our daughter is in good hands while we take a short time-out from parenting. I am very much looking forward to our kid-free anniversary, because who knows when (if ever) we'll have this sort of opportunity again?
PTSD and Parenting
For 8-1/2 years, I have been battling Post Traumatic Stress Disorder. The thing is, I didn't know I had PTSD until a few months ago. It has colored everything in my life for nearly a decade, causing me to make some questionable decisions, making me keep the people I love at arm's length, and creating a very high anxiety situation in my life. I can't sleep without sleeping pills, I have to take two anxiety pills a day, and I suffer from violent night terrors that result in me beating my husband in my sleep (though, in fairness, he probably deserves it. ;) )
C is nearly 4 years.... Which means I had PTSD for years before conceiving her and for the entire time I've been her mom. On a scale of 1-10, my standard stress level is an 8 or 9. I am constantly clenching my jaw, my knees, my toes... SOMETHING. I am incapable of relaxing. So how did learning my daughter had multiple disabilities and health conditions contribute to this? Well, it certainly didn't HELP my anxiety, that's for sure!
How do you face the world head-on, advocate for your child, and remain positive and supportive of them when you constantly feel like the world is a terrifying place full of life-threatening dangers? How do you focus on creating learning opportunities for your child through play when you can't stop thinking that you have no way to protect yourself if and when someone breaks through the front door?
About a month ago, I started seeing a new therapist who specializes in EMDR (look it up; it's interesting and effective for PTSD). We laid the groundwork for the therapy, creating a prioritized list of memories that are intrusive and cause great emotional disturbances, as well as a mental "safe place" (my childhood bedroom) to which I can retreat if therapy gets too difficult and I need to feel protected. Then my insurance company sent me a letter saying they were only approving 3 visits (2 of which I had already used) to the new therapist.
I went into a panic. I cried, I shook, and I curled up in bed for hours, unable to function. I had finally found someone with a technique that could actually help me and change my life for the better, and now the insurance company is threatening to take that away from me??!? It was a nightmare, and it sent me into an emotional crisis. I went into my daughter's bedroom to sit with her for a minute, and I emerged 45 minutes later without having uttered a sound or made a single move. I can only imagine what her little brain made of that!
Sometimes, it seems nearly impossible to take care of another human life when you feel so out of control over your own life. When the world is just too big and too scary and too dangerous to function, how do you prepare a child--especially a child with special needs--to enter that world? Wouldn't it be better just to lock her in her room for her entire life and spare her the pain and anguish that lurks in the world beyond the front door?
Most days, I do just fine. I wake up, I get her ready for preschool, and I put her on the bus without any major anxiety. I don't fret while she's at school, and I'm excited when the bus drops her off and I have my baby girl back in my arms. I remember that play is educational and therapeutic, and I play with her. I try to teach her new words, new ways to play, and new skills. I am a good mother.
Then there are those days when the walls come tumbling down around me, and all I can do is sit among the rubble and mourn the evils in the world, the way in which I suffer daily, and a general sense of hopelessness that interferes with my ability to see past my daughter's challenges and makes trying to raise my expectations and overcome the obstacles nearly impossible. I am a good mother, but I am not a perfect mother. I am broken, and sometimes I just don't work correctly or as intended.
Parenting with PTSD and mental illness is a constant struggle. Sure, there are pills and therapists and online support groups to help you through it... But I never feel like I'm good enough for C. I'm not whole, so how can I be the exceptional mother her disabilities require? At least I'm healthy enough to know I need help and to seek it out. I don't give up on my mental health any more than I would give up on C. On the hard days, I fight and I keep my head above water so I can be and do all the things I need to be and do. Then there are the easy days, when I can simply enjoy the miracles in my life and the wonder that is my little girl.
I'm looking forward to getting the insurance company on my side so I can get better and have more of those easy days.
C is nearly 4 years.... Which means I had PTSD for years before conceiving her and for the entire time I've been her mom. On a scale of 1-10, my standard stress level is an 8 or 9. I am constantly clenching my jaw, my knees, my toes... SOMETHING. I am incapable of relaxing. So how did learning my daughter had multiple disabilities and health conditions contribute to this? Well, it certainly didn't HELP my anxiety, that's for sure!
How do you face the world head-on, advocate for your child, and remain positive and supportive of them when you constantly feel like the world is a terrifying place full of life-threatening dangers? How do you focus on creating learning opportunities for your child through play when you can't stop thinking that you have no way to protect yourself if and when someone breaks through the front door?
About a month ago, I started seeing a new therapist who specializes in EMDR (look it up; it's interesting and effective for PTSD). We laid the groundwork for the therapy, creating a prioritized list of memories that are intrusive and cause great emotional disturbances, as well as a mental "safe place" (my childhood bedroom) to which I can retreat if therapy gets too difficult and I need to feel protected. Then my insurance company sent me a letter saying they were only approving 3 visits (2 of which I had already used) to the new therapist.
I went into a panic. I cried, I shook, and I curled up in bed for hours, unable to function. I had finally found someone with a technique that could actually help me and change my life for the better, and now the insurance company is threatening to take that away from me??!? It was a nightmare, and it sent me into an emotional crisis. I went into my daughter's bedroom to sit with her for a minute, and I emerged 45 minutes later without having uttered a sound or made a single move. I can only imagine what her little brain made of that!
Sometimes, it seems nearly impossible to take care of another human life when you feel so out of control over your own life. When the world is just too big and too scary and too dangerous to function, how do you prepare a child--especially a child with special needs--to enter that world? Wouldn't it be better just to lock her in her room for her entire life and spare her the pain and anguish that lurks in the world beyond the front door?
Most days, I do just fine. I wake up, I get her ready for preschool, and I put her on the bus without any major anxiety. I don't fret while she's at school, and I'm excited when the bus drops her off and I have my baby girl back in my arms. I remember that play is educational and therapeutic, and I play with her. I try to teach her new words, new ways to play, and new skills. I am a good mother.
Then there are those days when the walls come tumbling down around me, and all I can do is sit among the rubble and mourn the evils in the world, the way in which I suffer daily, and a general sense of hopelessness that interferes with my ability to see past my daughter's challenges and makes trying to raise my expectations and overcome the obstacles nearly impossible. I am a good mother, but I am not a perfect mother. I am broken, and sometimes I just don't work correctly or as intended.
Parenting with PTSD and mental illness is a constant struggle. Sure, there are pills and therapists and online support groups to help you through it... But I never feel like I'm good enough for C. I'm not whole, so how can I be the exceptional mother her disabilities require? At least I'm healthy enough to know I need help and to seek it out. I don't give up on my mental health any more than I would give up on C. On the hard days, I fight and I keep my head above water so I can be and do all the things I need to be and do. Then there are the easy days, when I can simply enjoy the miracles in my life and the wonder that is my little girl.
I'm looking forward to getting the insurance company on my side so I can get better and have more of those easy days.
Friday, November 25, 2011
Language Barriers
My child will be 4 in less than two months. She knows how to say "duck" and "baba" (bottle), and I've heard her say "block," "hi," "mama," and "buh-bye" before, although only a couple of times. In terms of her receptive language she understands (but ignores) the word "no," and she understands and responds to the phrases "Let go, please," "Night-night," and "Drink your milk."
Sadly, she does not understand "Don't take off your diaper and play with your poop" or "Please stop screaming until we leave the restaurant."
Sometimes, I love that she doesn't talk. She knows how to communicate her needs and desires through gestures (although she never did pick up on the ASL I crammed down her throat for 3 years) and sounds, and it's usually very gentle and calm. It's quiet and peaceful in most cases, and what mom doesn't appreciate a few moments of quiet and peaceful, especially when raising a child with disabilities?
Other times, though, it breaks my heart that she doesn't call me Mommy or tell me that she's hungry. I can't stand it when she's crying and doesn't want a bottle or to go to sleep, so I can't figure out what it is that she wants. It's REALLY hard knowing that I can sit and read her a book or talk to her for half an hour, and all she's getting from the interaction is the soothing sound of my voice, not the meaning of any of the words. It's impossible not to wonder what the long-term implications of her current language struggles will be, but there's no way of predicting whether she'll ever use language, so wondering and worrying bring about no good whatsoever.
I love my child, and I want the best for her. That includes wanting her to be able to navigate a language-driven world on her own, without me having to stand by to guess at what she's needing or wanting. It's a struggle I face on a daily basis, and, while I want her to develop language skills, if she doesn't, I won't ever complain. She truly is perfect exactly as she is, and I treasure every challenge that comes our way because they make us stronger and bring us closer together. She's my little sidekick, and I love having her by my side.
Sadly, she does not understand "Don't take off your diaper and play with your poop" or "Please stop screaming until we leave the restaurant."
Sometimes, I love that she doesn't talk. She knows how to communicate her needs and desires through gestures (although she never did pick up on the ASL I crammed down her throat for 3 years) and sounds, and it's usually very gentle and calm. It's quiet and peaceful in most cases, and what mom doesn't appreciate a few moments of quiet and peaceful, especially when raising a child with disabilities?
Other times, though, it breaks my heart that she doesn't call me Mommy or tell me that she's hungry. I can't stand it when she's crying and doesn't want a bottle or to go to sleep, so I can't figure out what it is that she wants. It's REALLY hard knowing that I can sit and read her a book or talk to her for half an hour, and all she's getting from the interaction is the soothing sound of my voice, not the meaning of any of the words. It's impossible not to wonder what the long-term implications of her current language struggles will be, but there's no way of predicting whether she'll ever use language, so wondering and worrying bring about no good whatsoever.
I love my child, and I want the best for her. That includes wanting her to be able to navigate a language-driven world on her own, without me having to stand by to guess at what she's needing or wanting. It's a struggle I face on a daily basis, and, while I want her to develop language skills, if she doesn't, I won't ever complain. She truly is perfect exactly as she is, and I treasure every challenge that comes our way because they make us stronger and bring us closer together. She's my little sidekick, and I love having her by my side.
Black Friday
This year, I didn't stay up all night to hit the midnight store openings. I didn't wake up early to hit the 5am store openings. In fact, I'm not shopping at all today. I've already spent more than I can afford on the husband's Christmas, anniversary, and birthday presents (all of which come within the same week), plus my car registration renewal was just due, so I'm low on funds, and, frankly, the only Black Friday deals were things I wanted to buy for myself. I just don't have the cash to be buying myself gifts this time of year. Besides, we don't need a new tv, a new laptop, or a gun, and those seem to be the only things on sale aside from clothing and toys my daughter can't use. =/
Instead of my traditional insane Black Friday shopping, I came home last night and took a sleeping pill for the first time in a few days. I slept from about 10pm until 2pm. I still feel like crap, but at least I feel like rested crap! Seems like my body is fighting off some sort of illness.... GO BODY! I really would prefer not to get sick. Just sayin'.
Thanksgiving was pretty fantastic. We had great sushi at a place we'd never been before with two of our friends up in Reno, and then we went to their house and watched Limitless. Ceili was mildly screamy and excitable at dinner, but she was quiet and entertained herself throughout the movie, which was great. I was very proud of my little girl's behavior. She's really a very good kid, and I consider myself a very lucky mommy.
On a completely unrelated note, my hair has been straight as an arrow my entire life. Now that I've completely torched it with bleach, though, it actually curls! I was able to curl my hair before I left the house yesterday, and it's still mostly curly now, 24 hours later, after sleeping on it. This was impossible before I went blonde, and I'm kind of excited abut it. Of course, when I hop in the shower after finishing this post, the curls will disappear... But it's nice to know I can get them back and keep them as long as I like. That's a first for me.
I hope you all had a wonderful Thanksgiving and that you're enjoying your Black Friday!
Instead of my traditional insane Black Friday shopping, I came home last night and took a sleeping pill for the first time in a few days. I slept from about 10pm until 2pm. I still feel like crap, but at least I feel like rested crap! Seems like my body is fighting off some sort of illness.... GO BODY! I really would prefer not to get sick. Just sayin'.
Thanksgiving was pretty fantastic. We had great sushi at a place we'd never been before with two of our friends up in Reno, and then we went to their house and watched Limitless. Ceili was mildly screamy and excitable at dinner, but she was quiet and entertained herself throughout the movie, which was great. I was very proud of my little girl's behavior. She's really a very good kid, and I consider myself a very lucky mommy.
On a completely unrelated note, my hair has been straight as an arrow my entire life. Now that I've completely torched it with bleach, though, it actually curls! I was able to curl my hair before I left the house yesterday, and it's still mostly curly now, 24 hours later, after sleeping on it. This was impossible before I went blonde, and I'm kind of excited abut it. Of course, when I hop in the shower after finishing this post, the curls will disappear... But it's nice to know I can get them back and keep them as long as I like. That's a first for me.
I hope you all had a wonderful Thanksgiving and that you're enjoying your Black Friday!
Wednesday, November 23, 2011
While We're Getting Situated...
I feel like I should post a brief comment about what I foresee this blog being. I'm going to chronicle the life of a parent of a child with special needs because, well, that's what I am. This will not, however, be a blog about how to be a parent or why you're a bad parent or what a great parent I am. This blog will also not be an online shrine to my darling daughter. I'll also try to keep the "icky" talk to a minimum, because, c'mon, no one wants to read about dirty diapers or vomit. Let's get real here.
I intend to post about life as I see it, through the darkly-colored glasses of Bipolar II Disorder and Post Traumatic Stress Disorder, but also through the rose-colored glasses of a tireless optimist who finds the beauty in life's darkest moments. Which isn't to imply that my life is dark. Actually, my life is pretty amazing, but I won't rub that in your face. I'll let you decide for yourself, fair enough?
Sometimes, I will post videos or pictures of my animals being cute, because who doesn't like cute animals? Sometimes, I will grieve the heavy burden that's been placed upon my shoulders. Other times, I will rejoice in life's many blessings. (Am I allowed to say blessings, or does that make me sound religious?)
When I want a new tattoo (which is virtually ALL of the time), I will post about that. When I bleach out my hair in an insane decision to go blonde or dye my bangs turquoise because I feel like a rock star, I will post about that. When school's got me a little bit insane, I'll be just another grad student blogging about schoolday woes.
This will inevitably have some of the markings of a mommy blog, because I'm a mom... blogging. However, there is so much more to my life than being a mom, and I intend to let all of it find its home in this safe little nook of the internet.
I encourage comments. Comments are good. Tell me if I'm posting about inane, drab stuff that no one wants to read. Tell me my hair looks awful in that last picture or that I need to pick a different color eyeshadow. Ask me questions. Tell me your stories. I would love to see this as more of a community and less of a diary... So speak up! Let me know you're out there, and let's talk about what's on YOUR mind!
For now, it's 10pm, and I'm lame, so I'm gonna go take a pill and hit the hay. Happy Thanksgiving, everyone! I'm celebrating with sushi, because I'm not the greatest cook in the world. How are you spending your day off?
I intend to post about life as I see it, through the darkly-colored glasses of Bipolar II Disorder and Post Traumatic Stress Disorder, but also through the rose-colored glasses of a tireless optimist who finds the beauty in life's darkest moments. Which isn't to imply that my life is dark. Actually, my life is pretty amazing, but I won't rub that in your face. I'll let you decide for yourself, fair enough?
Sometimes, I will post videos or pictures of my animals being cute, because who doesn't like cute animals? Sometimes, I will grieve the heavy burden that's been placed upon my shoulders. Other times, I will rejoice in life's many blessings. (Am I allowed to say blessings, or does that make me sound religious?)
When I want a new tattoo (which is virtually ALL of the time), I will post about that. When I bleach out my hair in an insane decision to go blonde or dye my bangs turquoise because I feel like a rock star, I will post about that. When school's got me a little bit insane, I'll be just another grad student blogging about schoolday woes.
This will inevitably have some of the markings of a mommy blog, because I'm a mom... blogging. However, there is so much more to my life than being a mom, and I intend to let all of it find its home in this safe little nook of the internet.
I encourage comments. Comments are good. Tell me if I'm posting about inane, drab stuff that no one wants to read. Tell me my hair looks awful in that last picture or that I need to pick a different color eyeshadow. Ask me questions. Tell me your stories. I would love to see this as more of a community and less of a diary... So speak up! Let me know you're out there, and let's talk about what's on YOUR mind!
For now, it's 10pm, and I'm lame, so I'm gonna go take a pill and hit the hay. Happy Thanksgiving, everyone! I'm celebrating with sushi, because I'm not the greatest cook in the world. How are you spending your day off?
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