My kid
I feel like writing about my kiddo today. Actually, I don't feel like writing about my kiddo, which is part of the reason why I feel like I should.
I love that kid. I think she is spectacular. She also is one of the most irritating and tragic people I have ever met at the same time.
I remember holding her for the first time the day she was born. I looked down at the little mewing bundle of pink flesh, all eyes and tiny spindly fingers like a tree frog and feeling robbed in that moment. I knew from watching a hundred movies and listening to dozens of people cooing about that first moment that I was supposed to feel this magical connection, this overwhelming love and adoration like nothing I had ever felt before. Instead I was in shock. I looked down at her clear blue eyes that stared into mine but registered nothing and thought "I don't know if I can keep this thing alive for a week, let alone 18 years." Suddenly 18 years yawned out before me like an endless tunnel. I simply couldn't fathom the great responsibility of being a parent and I felt in no way prepared for it.
But I grew into it pretty quickly. Within the first few days I had that moment-the one you were supposed to have instantly-and I've been in love with my daughter ever since. Although sometimes, especially these days, she challenges me in ways that still make me doubt I am up to her challenge. And sometimes I do still question whether I will be able to keep her alive, if she will actually outlive me, and sometimes the even more difficult questions is what will happen to her if she does outlive me-because my daughter has a serious mental illness-schizoaffective disorder. Schizoaffective is like the love child of psychotic disorder like schizophrenia and a mood disorder like bipolar.
As I sit here and contemplate how to possibility describe what it's like to have a child with this condition words fail me. There are so many preconceived ideas about an illness like my daughter's, it has caused so much distress, so much impairment, and yet at the same time my daughter is not a wholly tragic figure. In many ways she's heroic, and more admirable for what she has to deal with on a daily basis and still find reasons to be happy and enjoy life than anyone else I can think of or imagine.
I mean hell-part of her illness, as in the symptoms themselves-not a reaction to them, are apathy, lack of insight. How does one get better when they can't even understand what's wrong with them? How does someone develop the will to fight for their lives when the absence of motivation is a major symptom of their illness? And of course-that's only a drop in the bucket of her symptoms-I'm not even talking yet about the cluster-fuck of cognitive deficits like attention deficits, large lapses in memory (like entire conversations which SHE is engaged in that disappear from the old memory log), problems with working memory, verbal memory, executive functioning, metacognition......I sound like a doctor as I rattle off a list of cognitive deficits and negative symptoms in technical terms, but as a mother I see the effects of them every day. When she was extremely symptomatic she could not even strategize well enough to win a game of Go-Fish-if that puts it in more layman's terms. She could not follow directions well enough to cook herself a box of craft Mac and Cheese. She could not plan well enough to go the the movies, somehow forgetting when given the responsibility for researching and picking the time and location of the movie that DRIVE TIME would be necessary to calculate, that we would not be beaming to the movie through teleportation. These cognitive challenges coming from a child that pre-schizoaffective was an honor roll students studying for her SATs. She still repeats conversations we had a week ago, can't plan complex, long term goals, and becomes lost in multiphasic tasks.
And of course, what freaks out most people more than anything else-the psychosis. THAT took a while to get used to. Medication is pretty good at controlling these symptoms, called positive symptoms. But she has what is called "medication resistant" psychosis. Even on an effective medication regimen (which took six months of trial and error with a very unsafe baseline to find) she still has voices every day of her life, conversations from multiple voices, commenting on what she does, what she should do. Thankfully for her now these voices are like a radio turned down to volume 5, instead of multiple TVs pointed at her at high volume when her symptoms are severe. When severe she cannot even follow a conversation, or have very much awareness on what is going on around her. She is totally at their mercy. Sometimes they were friendly, telling her jokes and how everyone she met wanted her, and sometimes they were like your worst nightmare, showing her visions of cut up bodies and calling her names. Saying "Don't ignore us, don't ignore us, don't ignore us" in cannon if she tried to do anything as simple as read a book or listen to music. She would look at you but through you in a way that was so creepy and disconcerting, like a soulless living doll, and all her responses to you would be delayed, because she would have to go back and try to remember what you'd just said to distinguish it from the static in her mind.
Her delusions were quite common and unremarkable for anyone who understands psychosis. She thought she was going to meet the president, she thought what was on the TV was about her, she thought she knew what people were thinking and they were wanted to hurt her, she thought she had 21 angels who were looking out for her-she even made a list. Some people on the list I had never heard of, some were celebrities, some were people she knew-I was one of them. She told me they showed her signs of their presence to prove themselves by moving things around the house. She had sexual persecution delusions about rape. Those I don't like to talk about-they were some of the worst. She thought cameras were everywhere watching her.
One delusion in particular shattered my heart into a million pieces. My daughter was always a pretty girl, popular, but had never dated or had a boyfriend. She was really picky, or so I thought. Now I realize she probably has a maladaptive attachment style-but at the time I just though picky. She was attracted to the wrong kind of guy she would never actually date, and the right kind of guys she had no interest in-so she never had a boyfriend.
One day not long after she was released from yet another inpatient stay-I don't remember which one (she had 6 of them if you count the last, residential treatment facility she was in) she informed me with giddy excitement she had a date, and fussed over herself as she got ready for it with the same girlish enthusiasm any teenage girl has for her first date. Naturally I had all the normal concerns a mother has over her daughter's first date, and then some. So I asked her questions about where she knew this guy from, which of her friends he was friends with, if he went to her school, why had I never heard about him before, all the normal stuff. She has perfectly reasonable, sensible answers for every question I posed to her.
Finally, with some flash of instinct that came from I know not where, I asked her how they were communicating. She answered by text. Can I see them? I asked her. She stopped searching for shoes in her closet and turned to look at me. No. She responded. Why not? I asked after a moment, my anxiety mounting. "Because we're not communicating by text. We're communicating in my head." Came the devastating answer.
Well, what could I say to that? I was stricken, and mute, searching for some response that would not make her feel like a freak, something comforting, something that would restore normalcy to what should have been a totally typical mom-daughter conversation. Her eyes searched my face and I could seen the emotions unfolding as her distorted thoughts raced and she studied the obvious anguish written all over me. Her face fell, and the most desolate look I could ever imagine on someone so young came over her. Not only was she struggling with the same shame and disappointment any girl would go through when she realized she'd just been stood up by a young man, my daughter had to wrestle with the additional appalling truth that her young man was not real. He was a hallucination, and although a moment ago she'd been a young woman about to embark on a thrilling rite of passive in her moment of clarity she knew she was crazy. Just plain old, certifiably, catastrophically, coo-coo-for-cocoa-puff, dateless, friendless crazy. It was one of the saddest moments of my life-to see that realization in her eyes. "Get out of my room." She said quietly, folding her arms. Wordlessly I left.
That, in a nutshell, exemplifies the horrors of a psychotic teen dream. But psychosis has one small saving grace, one glimmer that allows one to occasionally be pulled back from the abyss. It is logical. Not rational, but logical. Sure the logic is not linear,it goes something like "car lights glow red. Devil eyes glow red. The devil is evil. Therefore car lights are evil." But occasionally that logic can be used to bring someone back to reality, even if it's just for a moment. And that moment can save a life.
But mood symptoms are like a wildfire that burns in the Santa Anna winds. Without working medications they are completely out of control and resistant to reason. With mania my daughter would be unable to sleep night after night, a whirlwind of activity, unable to complete anything and convinced of things like she would become the first blond haired, blue eyed gangsta rapper. She would rapid cycle, sometimes within hours to the depressive pole, crashing into it with the impact of a car going off a cliff at 100 miles and hour. In this black depression she would only think of dying, trying to kill herself several times, ending up the second time in ICU after vomiting blood and bleeding from every orifice from the 300 aspirin eating away the lining of her stomach. Through the revolving door of acute adolescent treatment facilities releasing her in two weeks after getting a new set of meds at therapeutic levels I got so I never trusted anything she said. Her suicide attempts were so impulsive, she was so cagey about her symptoms. When someone is in that state, you can't take every nail out of the wall. You have to admit that you can't keep them save and you have no recourse until they try again, and sleep no longer comes to you at night. You don't shower. You don't get the mail.
Now she is doing better. Compared to where she was it seems almost miraculous. There are times I feel so much gratitude for a daughter who seems so healthy in my peripheral vision that I feel like my heart will burst. Then other times when she does things that remind me she will never be "normal," she will never be that child I raised for 16 years again, or the one I expected her to be as an adult I think my heart will break. I worry about the next "episode" that statistics tell me will happen again at some point in her life, probably more than once. I worry about whether or not she will ever be able to function well enough to be independent. I worry about what will happen to her if anything ever happens to me, or when I die someday. So much uncertainty.
But none of that says anything about who my daughter IS. My daughter's mental illness is a part of her, but it doesn't define her. What defines her is a resiliency I could never touch and can only be inspired by. She gets up everyday and fights for control of her own mind and will, and forges relationships with people, she creates art from a divergent and exhilarated imagination, and supports others who struggle with mental illnesses in her woman's group, and participating in the NAMI walk. What defines her is a sense of humor that grounds me and tickles me every day. When she first got put on Lithium, and she had tremors so bad she couldn't even drink a glass of water without spilling it all over the front of her. One day at lunch after having done just that and seeing the look of compassion on my face she said "Don't worry mom, I'll just buy a tambourine and join a band." That is my daughter. And I wouldn't trade her for the world.
I love that kid. I think she is spectacular. She also is one of the most irritating and tragic people I have ever met at the same time.
I remember holding her for the first time the day she was born. I looked down at the little mewing bundle of pink flesh, all eyes and tiny spindly fingers like a tree frog and feeling robbed in that moment. I knew from watching a hundred movies and listening to dozens of people cooing about that first moment that I was supposed to feel this magical connection, this overwhelming love and adoration like nothing I had ever felt before. Instead I was in shock. I looked down at her clear blue eyes that stared into mine but registered nothing and thought "I don't know if I can keep this thing alive for a week, let alone 18 years." Suddenly 18 years yawned out before me like an endless tunnel. I simply couldn't fathom the great responsibility of being a parent and I felt in no way prepared for it.
But I grew into it pretty quickly. Within the first few days I had that moment-the one you were supposed to have instantly-and I've been in love with my daughter ever since. Although sometimes, especially these days, she challenges me in ways that still make me doubt I am up to her challenge. And sometimes I do still question whether I will be able to keep her alive, if she will actually outlive me, and sometimes the even more difficult questions is what will happen to her if she does outlive me-because my daughter has a serious mental illness-schizoaffective disorder. Schizoaffective is like the love child of psychotic disorder like schizophrenia and a mood disorder like bipolar.
As I sit here and contemplate how to possibility describe what it's like to have a child with this condition words fail me. There are so many preconceived ideas about an illness like my daughter's, it has caused so much distress, so much impairment, and yet at the same time my daughter is not a wholly tragic figure. In many ways she's heroic, and more admirable for what she has to deal with on a daily basis and still find reasons to be happy and enjoy life than anyone else I can think of or imagine.
I mean hell-part of her illness, as in the symptoms themselves-not a reaction to them, are apathy, lack of insight. How does one get better when they can't even understand what's wrong with them? How does someone develop the will to fight for their lives when the absence of motivation is a major symptom of their illness? And of course-that's only a drop in the bucket of her symptoms-I'm not even talking yet about the cluster-fuck of cognitive deficits like attention deficits, large lapses in memory (like entire conversations which SHE is engaged in that disappear from the old memory log), problems with working memory, verbal memory, executive functioning, metacognition......I sound like a doctor as I rattle off a list of cognitive deficits and negative symptoms in technical terms, but as a mother I see the effects of them every day. When she was extremely symptomatic she could not even strategize well enough to win a game of Go-Fish-if that puts it in more layman's terms. She could not follow directions well enough to cook herself a box of craft Mac and Cheese. She could not plan well enough to go the the movies, somehow forgetting when given the responsibility for researching and picking the time and location of the movie that DRIVE TIME would be necessary to calculate, that we would not be beaming to the movie through teleportation. These cognitive challenges coming from a child that pre-schizoaffective was an honor roll students studying for her SATs. She still repeats conversations we had a week ago, can't plan complex, long term goals, and becomes lost in multiphasic tasks.
And of course, what freaks out most people more than anything else-the psychosis. THAT took a while to get used to. Medication is pretty good at controlling these symptoms, called positive symptoms. But she has what is called "medication resistant" psychosis. Even on an effective medication regimen (which took six months of trial and error with a very unsafe baseline to find) she still has voices every day of her life, conversations from multiple voices, commenting on what she does, what she should do. Thankfully for her now these voices are like a radio turned down to volume 5, instead of multiple TVs pointed at her at high volume when her symptoms are severe. When severe she cannot even follow a conversation, or have very much awareness on what is going on around her. She is totally at their mercy. Sometimes they were friendly, telling her jokes and how everyone she met wanted her, and sometimes they were like your worst nightmare, showing her visions of cut up bodies and calling her names. Saying "Don't ignore us, don't ignore us, don't ignore us" in cannon if she tried to do anything as simple as read a book or listen to music. She would look at you but through you in a way that was so creepy and disconcerting, like a soulless living doll, and all her responses to you would be delayed, because she would have to go back and try to remember what you'd just said to distinguish it from the static in her mind.
Her delusions were quite common and unremarkable for anyone who understands psychosis. She thought she was going to meet the president, she thought what was on the TV was about her, she thought she knew what people were thinking and they were wanted to hurt her, she thought she had 21 angels who were looking out for her-she even made a list. Some people on the list I had never heard of, some were celebrities, some were people she knew-I was one of them. She told me they showed her signs of their presence to prove themselves by moving things around the house. She had sexual persecution delusions about rape. Those I don't like to talk about-they were some of the worst. She thought cameras were everywhere watching her.
One delusion in particular shattered my heart into a million pieces. My daughter was always a pretty girl, popular, but had never dated or had a boyfriend. She was really picky, or so I thought. Now I realize she probably has a maladaptive attachment style-but at the time I just though picky. She was attracted to the wrong kind of guy she would never actually date, and the right kind of guys she had no interest in-so she never had a boyfriend.
One day not long after she was released from yet another inpatient stay-I don't remember which one (she had 6 of them if you count the last, residential treatment facility she was in) she informed me with giddy excitement she had a date, and fussed over herself as she got ready for it with the same girlish enthusiasm any teenage girl has for her first date. Naturally I had all the normal concerns a mother has over her daughter's first date, and then some. So I asked her questions about where she knew this guy from, which of her friends he was friends with, if he went to her school, why had I never heard about him before, all the normal stuff. She has perfectly reasonable, sensible answers for every question I posed to her.
Finally, with some flash of instinct that came from I know not where, I asked her how they were communicating. She answered by text. Can I see them? I asked her. She stopped searching for shoes in her closet and turned to look at me. No. She responded. Why not? I asked after a moment, my anxiety mounting. "Because we're not communicating by text. We're communicating in my head." Came the devastating answer.
Well, what could I say to that? I was stricken, and mute, searching for some response that would not make her feel like a freak, something comforting, something that would restore normalcy to what should have been a totally typical mom-daughter conversation. Her eyes searched my face and I could seen the emotions unfolding as her distorted thoughts raced and she studied the obvious anguish written all over me. Her face fell, and the most desolate look I could ever imagine on someone so young came over her. Not only was she struggling with the same shame and disappointment any girl would go through when she realized she'd just been stood up by a young man, my daughter had to wrestle with the additional appalling truth that her young man was not real. He was a hallucination, and although a moment ago she'd been a young woman about to embark on a thrilling rite of passive in her moment of clarity she knew she was crazy. Just plain old, certifiably, catastrophically, coo-coo-for-cocoa-puff, dateless, friendless crazy. It was one of the saddest moments of my life-to see that realization in her eyes. "Get out of my room." She said quietly, folding her arms. Wordlessly I left.
That, in a nutshell, exemplifies the horrors of a psychotic teen dream. But psychosis has one small saving grace, one glimmer that allows one to occasionally be pulled back from the abyss. It is logical. Not rational, but logical. Sure the logic is not linear,it goes something like "car lights glow red. Devil eyes glow red. The devil is evil. Therefore car lights are evil." But occasionally that logic can be used to bring someone back to reality, even if it's just for a moment. And that moment can save a life.
But mood symptoms are like a wildfire that burns in the Santa Anna winds. Without working medications they are completely out of control and resistant to reason. With mania my daughter would be unable to sleep night after night, a whirlwind of activity, unable to complete anything and convinced of things like she would become the first blond haired, blue eyed gangsta rapper. She would rapid cycle, sometimes within hours to the depressive pole, crashing into it with the impact of a car going off a cliff at 100 miles and hour. In this black depression she would only think of dying, trying to kill herself several times, ending up the second time in ICU after vomiting blood and bleeding from every orifice from the 300 aspirin eating away the lining of her stomach. Through the revolving door of acute adolescent treatment facilities releasing her in two weeks after getting a new set of meds at therapeutic levels I got so I never trusted anything she said. Her suicide attempts were so impulsive, she was so cagey about her symptoms. When someone is in that state, you can't take every nail out of the wall. You have to admit that you can't keep them save and you have no recourse until they try again, and sleep no longer comes to you at night. You don't shower. You don't get the mail.
Now she is doing better. Compared to where she was it seems almost miraculous. There are times I feel so much gratitude for a daughter who seems so healthy in my peripheral vision that I feel like my heart will burst. Then other times when she does things that remind me she will never be "normal," she will never be that child I raised for 16 years again, or the one I expected her to be as an adult I think my heart will break. I worry about the next "episode" that statistics tell me will happen again at some point in her life, probably more than once. I worry about whether or not she will ever be able to function well enough to be independent. I worry about what will happen to her if anything ever happens to me, or when I die someday. So much uncertainty.
But none of that says anything about who my daughter IS. My daughter's mental illness is a part of her, but it doesn't define her. What defines her is a resiliency I could never touch and can only be inspired by. She gets up everyday and fights for control of her own mind and will, and forges relationships with people, she creates art from a divergent and exhilarated imagination, and supports others who struggle with mental illnesses in her woman's group, and participating in the NAMI walk. What defines her is a sense of humor that grounds me and tickles me every day. When she first got put on Lithium, and she had tremors so bad she couldn't even drink a glass of water without spilling it all over the front of her. One day at lunch after having done just that and seeing the look of compassion on my face she said "Don't worry mom, I'll just buy a tambourine and join a band." That is my daughter. And I wouldn't trade her for the world.
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