Wednesday, November 30, 2011
This Space Reserved for My Rant Against "Retarded"
I'm just too angry and hurt right now to compose a cohesive post.
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.
Tuesday, November 29, 2011
People
If there's one thing I've learned in my life, it's that there are wonderful people, and there are horrible people. Then, of course, there are those who fall somewhere in the middle. My personal experience has been that there are far more wonderful people than horrible people... So why do the horrible people seem to hold so much of the power?
I'm not talking political power, though there are certainly some extremely horrible people in politics. In fact, all we ever seem to hear about politicians are the horrible things. If there are wonderful people in that field (as I'm sure there are), they are virtually invisible. We can't see them through all the muck and the grime.
No no, what I mean is that the horrible people seem to be the ones who GET to us. The ones who hold power over our emotions, our experiences, and our lives. They're the ones we think most about, the ones whose presence seems to be felt most often when they're not even around. The horrible people are the ones who leave scars that we have to stare at for the rest of our lives. They're the ones who send us to therapy, get us hooked on anxiety and/or sleeping pills, and drive us to our nightly glass of wine or that one-too-many-shots night out with the girls. The horrible people are after power, and we hand it right over to them without even thinking. We LET them darken our skies and lengthen our nights. We let them in, and then we're too weak or maybe too polite to kick them out when they start to do damage. Instead of kicking them to the curb, we cling to them, we dwell on their evildoing, and we let them wreak havoc on our lives.
Why don't we, instead, give that power over to the wonderful people in our lives? The people who show us unconditional love, the people who are always supportive or encouraging, the people who volunteer and spend their time helping others instead of hurting them? Those in-between people don't get the power because they don't want it or seek it... But the do-gooders! They're trying to take back the power in the world, trying to make a change for the better, trying to bring joy and love to anyone they touch, and yet, we just don't let them.
Dear readers, I challenge you all to start taking back the power from the horrible people and giving it to the wonderful people instead. Don't let some jerk on the subway bring you down; instead, go talk to a friend about the good things in life and let them lift you up. If you've been scarred as I have, seek out help so you can take back that power for yourself and give it to those YOU choose, not those who took it from you without your consent.
Let's all try to be a little more positive in our lives. Let's try to stop and smell the roses, to gaze at a rainbow, or to make a wish upon a star a little more often. Let's rid our lives of the horrible people--just cut them off cold without ever glancing back. Let's put the power of the world into the hands of the people who want to make the world a better place. It shouldn't be too hard, because I'm quite sure there are more wonderful people out there than horrible people, and the wonderful people just need a little extra support.
I'm not talking political power, though there are certainly some extremely horrible people in politics. In fact, all we ever seem to hear about politicians are the horrible things. If there are wonderful people in that field (as I'm sure there are), they are virtually invisible. We can't see them through all the muck and the grime.
No no, what I mean is that the horrible people seem to be the ones who GET to us. The ones who hold power over our emotions, our experiences, and our lives. They're the ones we think most about, the ones whose presence seems to be felt most often when they're not even around. The horrible people are the ones who leave scars that we have to stare at for the rest of our lives. They're the ones who send us to therapy, get us hooked on anxiety and/or sleeping pills, and drive us to our nightly glass of wine or that one-too-many-shots night out with the girls. The horrible people are after power, and we hand it right over to them without even thinking. We LET them darken our skies and lengthen our nights. We let them in, and then we're too weak or maybe too polite to kick them out when they start to do damage. Instead of kicking them to the curb, we cling to them, we dwell on their evildoing, and we let them wreak havoc on our lives.
Why don't we, instead, give that power over to the wonderful people in our lives? The people who show us unconditional love, the people who are always supportive or encouraging, the people who volunteer and spend their time helping others instead of hurting them? Those in-between people don't get the power because they don't want it or seek it... But the do-gooders! They're trying to take back the power in the world, trying to make a change for the better, trying to bring joy and love to anyone they touch, and yet, we just don't let them.
Dear readers, I challenge you all to start taking back the power from the horrible people and giving it to the wonderful people instead. Don't let some jerk on the subway bring you down; instead, go talk to a friend about the good things in life and let them lift you up. If you've been scarred as I have, seek out help so you can take back that power for yourself and give it to those YOU choose, not those who took it from you without your consent.
Let's all try to be a little more positive in our lives. Let's try to stop and smell the roses, to gaze at a rainbow, or to make a wish upon a star a little more often. Let's rid our lives of the horrible people--just cut them off cold without ever glancing back. Let's put the power of the world into the hands of the people who want to make the world a better place. It shouldn't be too hard, because I'm quite sure there are more wonderful people out there than horrible people, and the wonderful people just need a little extra support.
A Bad Thing...
I have OCD and PTSD. It's a very bad thing when the lock on the front door sticks in the unlocked position. >.<
My First EMDR Session
This morning was my third visit to the new therapist, but our first time actually giving EMDR a shot. We started with what I had rated the least emotionally disturbing of my past traumas. I started out with a lot of trepidation about the therapy, anxiety and stress about the trauma, and a whole big ball of negative emotions in the pit of my stomach.
Now, somehow, after only an hour, I feel empowered. I feel like I rewrote the ending to that disaster, like I told the *** what I felt about him and what he did, and like I walked away and never looked back. None of those things actually happened, but we tricked my mind and body into believing they did, and now I'm breathing easier and can think about the experience without reliving it or experiencing profound anxiety. It has no more power over me than any other memory now... It's not an ongoing trauma that lives on in my brain. It's over, it's been resolved, and I can move on now. After six years. /whew!
The most interesting thing for me was that, at times, watching the therapist's fingers move back and forth, my mind would actually start to play back memories like a movie between the two ends of his finger movements. His fingers would slide across my visual field, and I'd get a flash of a black-and-white movie image, and it would slowly move and change with each pass of his fingers. It wasn't frightening or anxiety-provoking; it was like watching everything from a safe distance, through a protective lens, where I was in control and could change the outcome, or just blink twice really quickly and shut off the film altogether. It was truly fascinating!
When it was over, my body was relaxed, and I felt exhausted. Like, go home and take a 3-hour nap without the need for a sleeping pill exhausted. I also felt like crying, but part of my PTSD prevents me from crying in front of anyone but my husband and daughter (it feels too vulnerable and opens me up for attack), so I just swallowed back the tears and smiled my way out of the office. When C gets off the bus in twenty minutes and goes down for her nap, I'll probably sit down on the couch under my electric blanket, take a few deep breaths, and have a nice, cleansing cry. It's still welling up in me, just below the surface, but I can't risk a teary meltdown before I get C off the bus, so I'll just keep pushing it down until she's in bed.
The doctor assured me that he's doing the paperwork to get my future visits approved and that I will qualify for more than 3 visits, so I'm a little less stressed about that now. It will all get sorted out, and I *WILL* get better! I just wonder how long it will take...
This first one was the tip of the iceberg, the very least upsetting in a fairly long list of traumas. It took an hour to sort out. How long will the harder ones take? How difficult will it be to trick my brain with those? How much longer will they have so much power over me and my every thought, move, and breath? There are a lot of questions... But today gave me a lot of hope. I turned one tragedy into a meaningless, powerless memory, so who's to say I can't do that with the rest of them?
I'm feeling positive. Like I said earlier, I feel empowered. I can do this.
Now, somehow, after only an hour, I feel empowered. I feel like I rewrote the ending to that disaster, like I told the *** what I felt about him and what he did, and like I walked away and never looked back. None of those things actually happened, but we tricked my mind and body into believing they did, and now I'm breathing easier and can think about the experience without reliving it or experiencing profound anxiety. It has no more power over me than any other memory now... It's not an ongoing trauma that lives on in my brain. It's over, it's been resolved, and I can move on now. After six years. /whew!
The most interesting thing for me was that, at times, watching the therapist's fingers move back and forth, my mind would actually start to play back memories like a movie between the two ends of his finger movements. His fingers would slide across my visual field, and I'd get a flash of a black-and-white movie image, and it would slowly move and change with each pass of his fingers. It wasn't frightening or anxiety-provoking; it was like watching everything from a safe distance, through a protective lens, where I was in control and could change the outcome, or just blink twice really quickly and shut off the film altogether. It was truly fascinating!
When it was over, my body was relaxed, and I felt exhausted. Like, go home and take a 3-hour nap without the need for a sleeping pill exhausted. I also felt like crying, but part of my PTSD prevents me from crying in front of anyone but my husband and daughter (it feels too vulnerable and opens me up for attack), so I just swallowed back the tears and smiled my way out of the office. When C gets off the bus in twenty minutes and goes down for her nap, I'll probably sit down on the couch under my electric blanket, take a few deep breaths, and have a nice, cleansing cry. It's still welling up in me, just below the surface, but I can't risk a teary meltdown before I get C off the bus, so I'll just keep pushing it down until she's in bed.
The doctor assured me that he's doing the paperwork to get my future visits approved and that I will qualify for more than 3 visits, so I'm a little less stressed about that now. It will all get sorted out, and I *WILL* get better! I just wonder how long it will take...
This first one was the tip of the iceberg, the very least upsetting in a fairly long list of traumas. It took an hour to sort out. How long will the harder ones take? How difficult will it be to trick my brain with those? How much longer will they have so much power over me and my every thought, move, and breath? There are a lot of questions... But today gave me a lot of hope. I turned one tragedy into a meaningless, powerless memory, so who's to say I can't do that with the rest of them?
I'm feeling positive. Like I said earlier, I feel empowered. I can do this.
Monday, November 28, 2011
Subscribe to:
Posts (Atom)