yes, I'm still alive.
My whole body HURTS. My head HURTS. My brain HURTS. My heart HURTS.
I'm sitting in bed at 11:30 a.m., covers pulled up to my chest, AC set to 74, ceiling fan on high, coffee on my bedside table along with quilt mags that came in the mail earlier this week. Talk about despondent - I haven't even opened the magazines. Quilting? Hasn't happened all week.
AB is in his pajamas, lying on the floor singing to the dog who is also lying on the floor.
The Dad is in the recliner, hardly able to move. He's as sore as I am but for different reasons. WG has slept in our bed all week because she's terrified of Sissy's violent behaviors and screaming so The Dad has acquiesced and slept in the recliner all week. Neither of us has slept well at all, Sissy's been a loud, restless sleeper for two weeks now. We're on pins and needles because she is sleep walking again and the alarm is no longer sufficient to contain her in her room.
WG is also in her pajamas, playing contentedly with her stuffed doggies. She had major meltdowns the last two days, venting her fear and anxiety by beating up and berating me. We have been working through a therapy packet Sissy's therapist left for us. It seems to be stirring things up in WG's little mind.
Sissy is in the shower, I'm waiting for her to call 5's ... hold on, she's shouting ...
OK, so I went into the bathroom, she was hollering that there was no shampoo. (there was). She was showering in the dark and the bathroom smelled like urine, her soaked underwear in a ball on the bathroom floor ...
God, it's going to be a long day.
Sunday, July 31, 2011
Friday, July 29, 2011
Monday, July 25, 2011
Friday, July 22, 2011
Feelings
Yes, the song has lost something over the years, though the lyrics remain poignant.
Corey wrote about anger and resentment and it's place in our lives as parents of traumatized, challenged or otherwise impaired children. Lastmom wrote about the need to keep hope alive while raising our children. Both positions are valid because, as the song reiterates, it all boils down to feelings.
Most women openly admit that their feelings vary from day to day, even hour by hour. Men suffer from the same emotionality, they just express it in different ways. No one expresses feelings better than our children, especially children that come out of trauma with attachment issues. The important thing to remember, as my therapist has pointed out many times in the last two years, is that though feelings have a reason and a source, they change. Thank God.
So I bring to the table, a brief account of grief stages which includes but is not limited to bouts of optimism and anger. There is room for both, it seems. And lest we be fools, let us not forget that with loss, grief never seems to subside, it only lessens. For many, the process of grief repeats itself many times over. For many more, they get stuck somewhere in the process and the overwhelming pain forces them to resort to vices they would not have otherwise chosen if they were in a rational state. Wiki reports a study in which 10-15% of persons in grief never recover. [1] In those instances, the sufferer may have already had a preexisting condition of depression or at the very least, a genetic predisposition.
Bottom line? All of us are in a different place emotionally with our lives. All of us are justified in our emotions. All of us will report different feelings tomorrow. For today, let us be kind and accept where our comrades are emotionally in the fight against RAD. It is the kindest thing we can offer one another: the freedom to feel and not be judged for those feelings.
For those of you that are in a rough patch or want more information, I invite you to visit this website that has links to other emotional challenges you might be suffering as well. Grief from webmd site.
And because Corey mentioned it in the blog post I linked above, here is the link to the Layers of Loss post I wrote in March.
I'll conclude with Shakespeare's thoughts as they pertain to this matter. A most profound individual even if some scholars argue that there was no way the volume of his work can be attributed to just one man. [2]
1. Listen to many, speak to a few
2. Give thy thoughts no tongue
3. This above all, to thine own self be true
4. The mind is troubled like a fountain stirred; and I myself see not the bottom of it
5. A friend is one that knows you as you are, understands where you have been, accepts what you have become, and still, gently allows you to grow.
6. This above all: to thine own self be true, And it must follow, as the night the day, Thou canst not then be false to any man.
7. Love and reason keep little company together
8. Suspicion always haunts the guilty mind
9. Hell is empty and all the devils are here.
10. Go girl, seek happy nights to happy days.
11. The course of true love never did run smooth.
12. There's place and means for every man alive.
13. In time we hate that which we often fear
14. Self-love, my liege, is not so vile a sin, as self-neglecting.
15. There is a history in all men's lives
16. A fool thinks himself to be wise, but a wise man knows himself to be a fool.
17. Love all, trust a few, do wrong to none.
18. To be wise and love exceeds man's might.
19. Do not plunge thyself too far in anger.
20. Is love a tender thing? It is too rough, too rude, too boisterous; and it pricks like thorn.
To read more quotes by Shakespeare, Click here
[1]wiki search on grief. Please scroll to the subsection titled: "Risks" for citation source.
[2]Did Shakespeare really write all those plays? All hail my alma mater: We are ... Penn State!
Corey wrote about anger and resentment and it's place in our lives as parents of traumatized, challenged or otherwise impaired children. Lastmom wrote about the need to keep hope alive while raising our children. Both positions are valid because, as the song reiterates, it all boils down to feelings.
Most women openly admit that their feelings vary from day to day, even hour by hour. Men suffer from the same emotionality, they just express it in different ways. No one expresses feelings better than our children, especially children that come out of trauma with attachment issues. The important thing to remember, as my therapist has pointed out many times in the last two years, is that though feelings have a reason and a source, they change. Thank God.
So I bring to the table, a brief account of grief stages which includes but is not limited to bouts of optimism and anger. There is room for both, it seems. And lest we be fools, let us not forget that with loss, grief never seems to subside, it only lessens. For many, the process of grief repeats itself many times over. For many more, they get stuck somewhere in the process and the overwhelming pain forces them to resort to vices they would not have otherwise chosen if they were in a rational state. Wiki reports a study in which 10-15% of persons in grief never recover. [1] In those instances, the sufferer may have already had a preexisting condition of depression or at the very least, a genetic predisposition.
Bottom line? All of us are in a different place emotionally with our lives. All of us are justified in our emotions. All of us will report different feelings tomorrow. For today, let us be kind and accept where our comrades are emotionally in the fight against RAD. It is the kindest thing we can offer one another: the freedom to feel and not be judged for those feelings.
For those of you that are in a rough patch or want more information, I invite you to visit this website that has links to other emotional challenges you might be suffering as well. Grief from webmd site.
And because Corey mentioned it in the blog post I linked above, here is the link to the Layers of Loss post I wrote in March.
I'll conclude with Shakespeare's thoughts as they pertain to this matter. A most profound individual even if some scholars argue that there was no way the volume of his work can be attributed to just one man. [2]
1. Listen to many, speak to a few
2. Give thy thoughts no tongue
3. This above all, to thine own self be true
4. The mind is troubled like a fountain stirred; and I myself see not the bottom of it
5. A friend is one that knows you as you are, understands where you have been, accepts what you have become, and still, gently allows you to grow.
6. This above all: to thine own self be true, And it must follow, as the night the day, Thou canst not then be false to any man.
7. Love and reason keep little company together
8. Suspicion always haunts the guilty mind
9. Hell is empty and all the devils are here.
10. Go girl, seek happy nights to happy days.
11. The course of true love never did run smooth.
12. There's place and means for every man alive.
13. In time we hate that which we often fear
14. Self-love, my liege, is not so vile a sin, as self-neglecting.
15. There is a history in all men's lives
16. A fool thinks himself to be wise, but a wise man knows himself to be a fool.
17. Love all, trust a few, do wrong to none.
18. To be wise and love exceeds man's might.
19. Do not plunge thyself too far in anger.
20. Is love a tender thing? It is too rough, too rude, too boisterous; and it pricks like thorn.
To read more quotes by Shakespeare, Click here
[1]wiki search on grief. Please scroll to the subsection titled: "Risks" for citation source.
[2]Did Shakespeare really write all those plays? All hail my alma mater: We are ... Penn State!
Thursday, July 21, 2011
The Dream, The Judgement, The reality
The Dream
The night before Sissy was given a green card for psychiatric evaluation at the local crisis unit, WG and I cowered in fear in my bed, trying our best to sleep. Sissy had already raged for several hours that evening alone. I think The Dad and I tried to tally it up and from last Thursday to Tuesday morning, she spent about 16 hours in primal rage screaming and violent behaviors toward herself.
Monday night, we were so exhausted I didn't even bother to put sheets on the bed. WG and I just snuggled up on the bare mattress under the comforter. The Dad opted to sleep in the recliner in the living room because he didn't trust that Sissy wouldn't be up for playing the and-now-i-set-off-the-alarm-in-the-middle-of-the-night-to-wake-everyone-up-for-kicks game. Eventually, my PRN kicked in and I dosed in a fetal position, my body rigid like a stone. I dreamed of Sissy.
The dream began with the five of us going to a warehouse-type store to shop. WG had insisted on bringing her bike to ride but we were having difficulty finding a place to lock it up on the bike racks because they were all full. Worried that Sissy and AB would begin to meltdown before we even entered the store, I shooed The Dad and the two of them away saying that WG and I would catch up as soon as we locked up her bike.
As they walked off, the new care management coordinator on Sissy's case appeared (we had only met her for the first time that afternoon.) And when I turned back to look at WG and her bike, WG was gone, replaced by Sissy as a toddler - a screaming, tantruming toddler that was running away from me through the maze of bike racks. Concerned for her safety, the therapist and I ran after her to see what all the fuss was and to keep her out of traffic.
Just as we caught up with her and I was about to grab her, the three of us were in a sewer tunnel and Sissy was 11 again defiantly refusing to follow my direction to walk behind me so she wouldn't get hurt. At the end of the tunnel I saw another version of Sissy sitting under a tree sobbing but wearing a devilish grin. While in the tunnel, the defiant Sissy pushed hard against my grasp, refusing to be detained or to follow my direction. I could feel the intensity in her body as I tried to hold her back and I could hear the fear in my voice as I called out to her, "it's not safe, she's not safe, stay back!"
Too late, Sissy ran ahead, escaping my grasp and went straight to the girl under the tree at the end of the tunnel. Then before my eyes, the two became one and the girl sitting under the tree jumped up and cackled at me while she bore holes through me with anger. I whispered to the therapist, we were still in the tunnel, "now you see what I'm talking about." I woke up instantly to discover I was laying on my back, my arms wrapped around my shoulders like I was trying to hug and hold myself. My whole body ached from tension. I knew unequivocally that I had dreamed of three of Sissy's identities. [1]
While I slept, The Dad was having his own event with Sissy. His account of the events can be described as nothing short of Sissy being fully awake but as a male identity. She spoke in a lower, monotone voice, had a rigid body posture and looked at him as though he wasn't there. Then he said she shook all over and was back to "normal" Sissy, confused as to why he was in the room asking her questions. Many times The Dad and I are on the same page, dreaming or experiencing the same things at the same time but while we're apart. It has become what we call, a "bell ringer" for us, as though our subconscious minds are yelling simultaneously, "FORE!"
By Tuesday morning, it was WWIII with her and the mobile crisis team was in my living room doing an intake for psychiatric evaluation. Sissy? She was expressing her disdain for me by growling when she asked if we could please show the ladies (complete strangers, mind you) her box of baby items that I have squirreled away in the garage. When they left, she ran to the window gleefully waving goodbye and making declarations of missing them. I sent her to her room to take a nap while I waited for them to call back with a confirmation from the hospital of an available bed. When I woke her up and told her we were going, she was glad and wanted to know if she could take her comforter and pillow this time, "please, please, pretty please?" she begged as sweetly as she could with doe eyes and clasped hands. "I'll do anything." Then she lowered her eyes angrily and growled, "it's torn!." (I promised to fix it when she returned to green level behaviors.)
The Judgement
Of course, Sissy was regulated by the time we got to the psych floor and I was a disheveled mess. Our differing accounts of events, I'm certain, didn't help matters much but by Wednesday morning the lead psychiatrist on the floor was phoning our IFI supervisor to get the skinny on our family situation. As our IFI super recounted the conversation to me, she said she was taken aback by the air of judgement toward the parents she could audibly hear in the psychiatrist's voice. The therapist said she had never been on this side of the fence before, feeling the condemnation and judgement when she knew unequivocally it was unwarranted. She spent the entire conversation defending The Dad and I, reassuring the psychiatrist that Sissy is "being good" on the floor because she's a text book RAD and that when it comes to parents, we've got it going on in spades - best parents she's seen in 20 years.
By the time I showed up for the family session today, the psych ward therapist and the admitting psychiatrist stood up and shook my hand, saying that my husband and I had gotten a glowing report and that they were so sorry that there is nothing else they can do, that they are just as mystified and befuddled by the level of manipulation and psychiatric care Sissy requires as everyone else. After an hour of my bawling and barely audibly telling our family story, we rose again and I got another firm handshake from both of them, wishing that they could do more for our family.
The Reality
As glad as I am to finally have a professional standing in the corner of the ring with us, I'm still angry and obliterated emotionally that after all this time, my ability to provide an appropriate therapeutic environment for Sissy is still under the microscope. I'm not sure which is harder to bare: Sissy's incessant raging, manipulation and defiance or the incessant judgement from professionals that take ten minutes to evaluate our social history and determine that it is ME that is the reason Sissy isn't excelling in the community because they are using Sissy's pretty-patty-princess act as their defining tool. Honest, God himself wouldn't judge me this hard.
And with that, Sissy will be discharged from the crisis unit tomorrow. She is not showing any behaviors that need clinical treatment and therefore the hospital can not detain her because there is no clinical need to keep her and thus bill medicaid for.
As for PRTF, we are still playing the waiting game.
Oh that the future of my life wouldn't always be determined by someone else's judgement of my family's situation; a judgement they make from a clinician's case summary; a clinician that has spent maybe three hours staffing our case; a case that is 11 years old and getting worse by the minute, not better.
If not for this blog, I would have no voice at all.
[1] as of now, Sissy has not been clinically diagnosed with dissociative identity disorder. She is "being watched" for those types of behaviors along with schizophrenia, schizoid effectiveness disorder and bipolar with psychoses. Her private psychiatrist prefers to defer diagnosis of this level of mental health issue until post puberty, a clinical opinion I wholeheartedly support and applaud.
The night before Sissy was given a green card for psychiatric evaluation at the local crisis unit, WG and I cowered in fear in my bed, trying our best to sleep. Sissy had already raged for several hours that evening alone. I think The Dad and I tried to tally it up and from last Thursday to Tuesday morning, she spent about 16 hours in primal rage screaming and violent behaviors toward herself.
Monday night, we were so exhausted I didn't even bother to put sheets on the bed. WG and I just snuggled up on the bare mattress under the comforter. The Dad opted to sleep in the recliner in the living room because he didn't trust that Sissy wouldn't be up for playing the and-now-i-set-off-the-alarm-in-the-middle-of-the-night-to-wake-everyone-up-for-kicks game. Eventually, my PRN kicked in and I dosed in a fetal position, my body rigid like a stone. I dreamed of Sissy.
The dream began with the five of us going to a warehouse-type store to shop. WG had insisted on bringing her bike to ride but we were having difficulty finding a place to lock it up on the bike racks because they were all full. Worried that Sissy and AB would begin to meltdown before we even entered the store, I shooed The Dad and the two of them away saying that WG and I would catch up as soon as we locked up her bike.
As they walked off, the new care management coordinator on Sissy's case appeared (we had only met her for the first time that afternoon.) And when I turned back to look at WG and her bike, WG was gone, replaced by Sissy as a toddler - a screaming, tantruming toddler that was running away from me through the maze of bike racks. Concerned for her safety, the therapist and I ran after her to see what all the fuss was and to keep her out of traffic.
Just as we caught up with her and I was about to grab her, the three of us were in a sewer tunnel and Sissy was 11 again defiantly refusing to follow my direction to walk behind me so she wouldn't get hurt. At the end of the tunnel I saw another version of Sissy sitting under a tree sobbing but wearing a devilish grin. While in the tunnel, the defiant Sissy pushed hard against my grasp, refusing to be detained or to follow my direction. I could feel the intensity in her body as I tried to hold her back and I could hear the fear in my voice as I called out to her, "it's not safe, she's not safe, stay back!"
Too late, Sissy ran ahead, escaping my grasp and went straight to the girl under the tree at the end of the tunnel. Then before my eyes, the two became one and the girl sitting under the tree jumped up and cackled at me while she bore holes through me with anger. I whispered to the therapist, we were still in the tunnel, "now you see what I'm talking about." I woke up instantly to discover I was laying on my back, my arms wrapped around my shoulders like I was trying to hug and hold myself. My whole body ached from tension. I knew unequivocally that I had dreamed of three of Sissy's identities. [1]
While I slept, The Dad was having his own event with Sissy. His account of the events can be described as nothing short of Sissy being fully awake but as a male identity. She spoke in a lower, monotone voice, had a rigid body posture and looked at him as though he wasn't there. Then he said she shook all over and was back to "normal" Sissy, confused as to why he was in the room asking her questions. Many times The Dad and I are on the same page, dreaming or experiencing the same things at the same time but while we're apart. It has become what we call, a "bell ringer" for us, as though our subconscious minds are yelling simultaneously, "FORE!"
By Tuesday morning, it was WWIII with her and the mobile crisis team was in my living room doing an intake for psychiatric evaluation. Sissy? She was expressing her disdain for me by growling when she asked if we could please show the ladies (complete strangers, mind you) her box of baby items that I have squirreled away in the garage. When they left, she ran to the window gleefully waving goodbye and making declarations of missing them. I sent her to her room to take a nap while I waited for them to call back with a confirmation from the hospital of an available bed. When I woke her up and told her we were going, she was glad and wanted to know if she could take her comforter and pillow this time, "please, please, pretty please?" she begged as sweetly as she could with doe eyes and clasped hands. "I'll do anything." Then she lowered her eyes angrily and growled, "it's torn!." (I promised to fix it when she returned to green level behaviors.)
The Judgement
Of course, Sissy was regulated by the time we got to the psych floor and I was a disheveled mess. Our differing accounts of events, I'm certain, didn't help matters much but by Wednesday morning the lead psychiatrist on the floor was phoning our IFI supervisor to get the skinny on our family situation. As our IFI super recounted the conversation to me, she said she was taken aback by the air of judgement toward the parents she could audibly hear in the psychiatrist's voice. The therapist said she had never been on this side of the fence before, feeling the condemnation and judgement when she knew unequivocally it was unwarranted. She spent the entire conversation defending The Dad and I, reassuring the psychiatrist that Sissy is "being good" on the floor because she's a text book RAD and that when it comes to parents, we've got it going on in spades - best parents she's seen in 20 years.
By the time I showed up for the family session today, the psych ward therapist and the admitting psychiatrist stood up and shook my hand, saying that my husband and I had gotten a glowing report and that they were so sorry that there is nothing else they can do, that they are just as mystified and befuddled by the level of manipulation and psychiatric care Sissy requires as everyone else. After an hour of my bawling and barely audibly telling our family story, we rose again and I got another firm handshake from both of them, wishing that they could do more for our family.
The Reality
As glad as I am to finally have a professional standing in the corner of the ring with us, I'm still angry and obliterated emotionally that after all this time, my ability to provide an appropriate therapeutic environment for Sissy is still under the microscope. I'm not sure which is harder to bare: Sissy's incessant raging, manipulation and defiance or the incessant judgement from professionals that take ten minutes to evaluate our social history and determine that it is ME that is the reason Sissy isn't excelling in the community because they are using Sissy's pretty-patty-princess act as their defining tool. Honest, God himself wouldn't judge me this hard.
And with that, Sissy will be discharged from the crisis unit tomorrow. She is not showing any behaviors that need clinical treatment and therefore the hospital can not detain her because there is no clinical need to keep her and thus bill medicaid for.
As for PRTF, we are still playing the waiting game.
Oh that the future of my life wouldn't always be determined by someone else's judgement of my family's situation; a judgement they make from a clinician's case summary; a clinician that has spent maybe three hours staffing our case; a case that is 11 years old and getting worse by the minute, not better.
If not for this blog, I would have no voice at all.
[1] as of now, Sissy has not been clinically diagnosed with dissociative identity disorder. She is "being watched" for those types of behaviors along with schizophrenia, schizoid effectiveness disorder and bipolar with psychoses. Her private psychiatrist prefers to defer diagnosis of this level of mental health issue until post puberty, a clinical opinion I wholeheartedly support and applaud.
Wednesday, July 20, 2011
Will this ever end?
LONG trip to the hospital with Sissy - unescorted - again. Yeah, because like hell was I going to have another pissy EMT drive us in an ambulance. There's a memory I can do without repeating.
When most people go to the hospital for direct admission, they are not escorted by a hospital security guard to the unit.
Unless you're admitting a pediatric psychiatric patient.
Fun times.
Let me tell you, the looks and glances from people on the elevator with us (ninth floor ward, ya'll. it was a LONG ride up with a stop to nearly every floor on the way all with a security escort) are a bit much to bare. I wanted to say hey rubberneckers - YOU wanna raise my mentally ill daughter?!? Piss off! Fortunately, Sissy had her quilt from her Noni wrapped tightly around her head, obscuring her identity. Yes, that may have been part of the reason we were getting strange looks but honestly, the security escort didn't help. Especially when he gave knowing glances to every medical professional that got on and off that elevator on the way up. Oh, and then said idiotic things to Sissy. Seriously, you'd think he'd never escorted a psych patient before. He was more nervous than me.
Sissy's only complaint after days of escalating behaviors ending in a mobile crisis team at the house tuesday morning? great. Now I'll have to get all that lab work done again.
*sigh*
We finally made it to the ward with escort and when the locked doors flew open when he waved his security pass, I breathed out, "ah, home." A Freudian slip? Sure. But heck, we've been up there often enough and really, it is quiet, bland and PRECISELY what Sissy needs to deescalate. She immediately settled down and then began her don't-admit-any-fault-whatsoever-lie-to-save-your-ass game with the nursing and psychiatric staff that finished our intake. Fortunately for me, the doc on the unit yesterday has been with Sissy before and called her bluffs. which Sissy was not amused by and thus she shut down altogether. Because that's what you do when you don't want to tell a doctor what events led up to your involuntary psychiatric placement, right? Right?
I've had enough psychosis to last me a lifetime. My poor baby's mind is splintering before our eyes and no one is able to stop it. I've gotten more compliments from the professional staff on our case in the last 35 days about The Dad's and my parenting abilities than I've received in the last five years trying to get help for Sissy. Everyone, not some, EVERYONE agrees Sissy needs long term. No one is able to secure that for us because? Because our state no longer offers that for children.
The hope is that she'll be back in residential by next week. She was home 35 days before nuclear meltdown.
Honestly? I'm surprised it took her that long.
God, will this ever end?
When most people go to the hospital for direct admission, they are not escorted by a hospital security guard to the unit.
Unless you're admitting a pediatric psychiatric patient.
Fun times.
Let me tell you, the looks and glances from people on the elevator with us (ninth floor ward, ya'll. it was a LONG ride up with a stop to nearly every floor on the way all with a security escort) are a bit much to bare. I wanted to say hey rubberneckers - YOU wanna raise my mentally ill daughter?!? Piss off! Fortunately, Sissy had her quilt from her Noni wrapped tightly around her head, obscuring her identity. Yes, that may have been part of the reason we were getting strange looks but honestly, the security escort didn't help. Especially when he gave knowing glances to every medical professional that got on and off that elevator on the way up. Oh, and then said idiotic things to Sissy. Seriously, you'd think he'd never escorted a psych patient before. He was more nervous than me.
Sissy's only complaint after days of escalating behaviors ending in a mobile crisis team at the house tuesday morning? great. Now I'll have to get all that lab work done again.
*sigh*
We finally made it to the ward with escort and when the locked doors flew open when he waved his security pass, I breathed out, "ah, home." A Freudian slip? Sure. But heck, we've been up there often enough and really, it is quiet, bland and PRECISELY what Sissy needs to deescalate. She immediately settled down and then began her don't-admit-any-fault-whatsoever-lie-to-save-your-ass game with the nursing and psychiatric staff that finished our intake. Fortunately for me, the doc on the unit yesterday has been with Sissy before and called her bluffs. which Sissy was not amused by and thus she shut down altogether. Because that's what you do when you don't want to tell a doctor what events led up to your involuntary psychiatric placement, right? Right?
I've had enough psychosis to last me a lifetime. My poor baby's mind is splintering before our eyes and no one is able to stop it. I've gotten more compliments from the professional staff on our case in the last 35 days about The Dad's and my parenting abilities than I've received in the last five years trying to get help for Sissy. Everyone, not some, EVERYONE agrees Sissy needs long term. No one is able to secure that for us because? Because our state no longer offers that for children.
The hope is that she'll be back in residential by next week. She was home 35 days before nuclear meltdown.
Honestly? I'm surprised it took her that long.
God, will this ever end?
Friday, July 15, 2011
PRTF?
LONG rage day with Sissy yesterday. Started when one therapist left and ended when the next therapist arrived, four and a half hours later.
LONG round table discussion with the IFI supervisor on Sissy's case. Our options are few and none are favorable.
This is the email she sent to the core provider that can help us get PRTF:
It has been so refreshing to work with a team that finally, thank god almighty - FINALLY, understands Sissy. She is, as we have said, emotionally retarded. She will NOT recover. She WILL drag our family down, it is an inevitability. We've been hearing it for six months now from agencies, the hospital and therapists: move or relinquish. Neither are viable options for various reasons. Getting Sissy back in PRTF buys us time to find a viable option.
Do I want my daughter back in the hospital? Does ANY mother want that for her daughter? In this instance, to save Sissy, to save our family, yes, I want her back in the hospital.
I laugh alot because if I don't I will cry. That one small girl could be so irrevocably damaged is staggering to contemplate.
LONG round table discussion with the IFI supervisor on Sissy's case. Our options are few and none are favorable.
This is the email she sent to the core provider that can help us get PRTF:
Core Provider Representative,
I was with Sissy's family last night and though we are currently
waiting for your agency to provide wrap around services, I believe that it is unavoidable that Sissy return to PRTF.
She is having 3-5 rages per week. These will last from 2hrs to all day.
Yesterday was all day. she screams non-stop, and when a parent tries to speak with her she begins screaming about all of the injustices she
perceives have occurred against her.
As I have come to know this family and Sissy better I do not believe
there is anything we can do to stop these rages.
Can you please advise about how we can get her back into PRTF?
It has been so refreshing to work with a team that finally, thank god almighty - FINALLY, understands Sissy. She is, as we have said, emotionally retarded. She will NOT recover. She WILL drag our family down, it is an inevitability. We've been hearing it for six months now from agencies, the hospital and therapists: move or relinquish. Neither are viable options for various reasons. Getting Sissy back in PRTF buys us time to find a viable option.
Do I want my daughter back in the hospital? Does ANY mother want that for her daughter? In this instance, to save Sissy, to save our family, yes, I want her back in the hospital.
I laugh alot because if I don't I will cry. That one small girl could be so irrevocably damaged is staggering to contemplate.
Thursday, July 14, 2011
Who gets the punishment in the end?
Sissy is in her room, fuming. Or sleeping. One or the other. At least it's not screaming. We've had enough of her crocodile, two-year old tears for awhile, thanks very much.
Using our color system for behaviors, if Sissy gets bumped down a level from green to yellow (caution) then she is to do a journal entry about said behavior that got her to that level. I prompted her before lunch, "after lunch, if you want to move back to green, you'll need to do a journal entry." She said, "OK" and then it was time to make food.
Well, that was a hullabaloo. Ugh. She has to have the last word, she has to correct everything I say, she doesn't know when to shut her mouth. After FIVE attempts to therapeutically correct her (all while just making lunch so... in five minutes?) I raised the tenor of my voice to drive home the point. She squeezed her eyes tight and proceeded to produce an infantile cry and tears (and really, it sounds exactly the same as an infant crying for a bottle, it invokes the same maternal instinct to nurture and soothe only an 11 year old doesn't need a bottle so instead of oxytocin levels, it raises my adrenaline.)
I finally said, "I'm going to say it once more and then you're going to answer with only two words - 'yes' and 'ma'am'. If you cry over me so you can't hear me, I'll send you to timeout. Do not talk back. Do not correct mom. Do not get the last word. And now you say?"
Glaring eyes and a guttural tone, "YES MA'AM!"
I wash it away emotionally and return to a neutral tone, "please take your lunch to the table."
She said nothing while I prepared my meal, AB finished up and cleared his place (WG is at her Grandma's for the week so she has been spared this nonsense). I finally sat down and Sissy says, "Can babies drink soda?"
My turn to glare. "Sissy, don't ask a question you know the answer to."
"What? I don't know. Can they? What about toddlers?"
More glaring followed by ignoring.
"Well, can they? Can toddlers have soda?"
"What's the answer Sissy. You know."
"No. They can't."
"Don't ask questions you know the answer to."
"I didn't! I didn't know?"
More glaring from mom.
"Seriously!"
I took a deep breath and resumed my meal, not making eye contact and trying the ignore tactic the therapists are asking me to work on. Sissy muttered to her own lunch, "really. I didn't know. Why does everyone always pick on me? It's not fair. I didn't know. seriously."
I bit my lip and continued to ignore.
She started with the infantile whining again.
"fine sissy," I jumped in. "I'll just return the favor. All day I'm going to ask you questions I already know the answer to just to fill up the space."
"NO! That's not fair, that wouldn't be nice, that's mean!"
"So... it's not mean when you do it to me?"
*grunting*
I resumed eating and said to my lunch, "Do you have brown hair? Do you like the color pink? Do you sleep in a bed? Are you a girl?"
"STOP!!!!"
"It's not fun, is it?"
*more grunting*
"Do not fill up space with questions you know the answer to." Then I added as an aha afterthought, "Sissy, being corrected about a behavior doesn't mean my love stops. In fact, if I DON'T correct your behaviors, then I wouldn't be loving you."
I waited to make sure I had her attention. "I need you to stop having the last word, talking back and correcting me. You need to know that behavior needs to be corrected. I still love you when I correct you."
Then the air was clear in the room and we finished our lunches. All was well until it was post-lunch and time to write in the journal.
Rage fest.
I said, "fine. don't write in the journal. i don't care. I just can't change your color back to green until you do."
"FINE! I don't care if I'm on yellow!" she quipped back.
So I upped the ante, "Just know that if you're yellow for four shifts, I automatically change it to red and your privileges are revoked."
"WHAT!?!?! You can't do that! That's not fair!!!!"
"If you're going to scream at me, then you need to go to your room.
So currently she's fuming in her room (or sleeping to avoid), refusing to write in the journal. This after twenty minutes of infantile screaming. The Dad and I disagreed at first, he feels she should be forced to write in the journal. I argued that then WE get the punishment because it would turn into a day-long standoff rage fest, her way to prove us wrong all while she continued to get her way.
If I put the pressure back on her, then I'm not the one being punished. I haven't done anything wrong, which is the point. RADishes don't believe or can't or won't believe that they need to change something about themselves. It goes against their innate nature to survive at all cost. Today, it's costing Sissy a color change and tomorrow, it might cost her loss of privileges and a move to red. But one thing's for certain, I won't pay the cost anymore.
Using our color system for behaviors, if Sissy gets bumped down a level from green to yellow (caution) then she is to do a journal entry about said behavior that got her to that level. I prompted her before lunch, "after lunch, if you want to move back to green, you'll need to do a journal entry." She said, "OK" and then it was time to make food.
Well, that was a hullabaloo. Ugh. She has to have the last word, she has to correct everything I say, she doesn't know when to shut her mouth. After FIVE attempts to therapeutically correct her (all while just making lunch so... in five minutes?) I raised the tenor of my voice to drive home the point. She squeezed her eyes tight and proceeded to produce an infantile cry and tears (and really, it sounds exactly the same as an infant crying for a bottle, it invokes the same maternal instinct to nurture and soothe only an 11 year old doesn't need a bottle so instead of oxytocin levels, it raises my adrenaline.)
I finally said, "I'm going to say it once more and then you're going to answer with only two words - 'yes' and 'ma'am'. If you cry over me so you can't hear me, I'll send you to timeout. Do not talk back. Do not correct mom. Do not get the last word. And now you say?"
Glaring eyes and a guttural tone, "YES MA'AM!"
I wash it away emotionally and return to a neutral tone, "please take your lunch to the table."
She said nothing while I prepared my meal, AB finished up and cleared his place (WG is at her Grandma's for the week so she has been spared this nonsense). I finally sat down and Sissy says, "Can babies drink soda?"
My turn to glare. "Sissy, don't ask a question you know the answer to."
"What? I don't know. Can they? What about toddlers?"
More glaring followed by ignoring.
"Well, can they? Can toddlers have soda?"
"What's the answer Sissy. You know."
"No. They can't."
"Don't ask questions you know the answer to."
"I didn't! I didn't know?"
More glaring from mom.
"Seriously!"
I took a deep breath and resumed my meal, not making eye contact and trying the ignore tactic the therapists are asking me to work on. Sissy muttered to her own lunch, "really. I didn't know. Why does everyone always pick on me? It's not fair. I didn't know. seriously."
I bit my lip and continued to ignore.
She started with the infantile whining again.
"fine sissy," I jumped in. "I'll just return the favor. All day I'm going to ask you questions I already know the answer to just to fill up the space."
"NO! That's not fair, that wouldn't be nice, that's mean!"
"So... it's not mean when you do it to me?"
*grunting*
I resumed eating and said to my lunch, "Do you have brown hair? Do you like the color pink? Do you sleep in a bed? Are you a girl?"
"STOP!!!!"
"It's not fun, is it?"
*more grunting*
"Do not fill up space with questions you know the answer to." Then I added as an aha afterthought, "Sissy, being corrected about a behavior doesn't mean my love stops. In fact, if I DON'T correct your behaviors, then I wouldn't be loving you."
I waited to make sure I had her attention. "I need you to stop having the last word, talking back and correcting me. You need to know that behavior needs to be corrected. I still love you when I correct you."
Then the air was clear in the room and we finished our lunches. All was well until it was post-lunch and time to write in the journal.
Rage fest.
I said, "fine. don't write in the journal. i don't care. I just can't change your color back to green until you do."
"FINE! I don't care if I'm on yellow!" she quipped back.
So I upped the ante, "Just know that if you're yellow for four shifts, I automatically change it to red and your privileges are revoked."
"WHAT!?!?! You can't do that! That's not fair!!!!"
"If you're going to scream at me, then you need to go to your room.
So currently she's fuming in her room (or sleeping to avoid), refusing to write in the journal. This after twenty minutes of infantile screaming. The Dad and I disagreed at first, he feels she should be forced to write in the journal. I argued that then WE get the punishment because it would turn into a day-long standoff rage fest, her way to prove us wrong all while she continued to get her way.
If I put the pressure back on her, then I'm not the one being punished. I haven't done anything wrong, which is the point. RADishes don't believe or can't or won't believe that they need to change something about themselves. It goes against their innate nature to survive at all cost. Today, it's costing Sissy a color change and tomorrow, it might cost her loss of privileges and a move to red. But one thing's for certain, I won't pay the cost anymore.
Tuesday, July 5, 2011
Relegated to the Garage
I've been relegated to the garage.
See, if I was a RADlet, I'd just leave that sentence as it is, not providing any background information or further commentary to give the reader more insight into what exactly "relegated to the garage" means. Because if I were a RADlet, I'd prefer that my listener take a negative connotation and therefore be sympathetic to my perceived plight, however misconstrued it might be. Only the wise, cynical and cautious individual takes such open-ended comments with a grain of salt. And in most cases, that wisdom, cynicism and cautiousness are earned through painful stripes, welts and bruises from other equally idiosyncratic homo sapiens.
Ergo, yes, I've been relegated to the garage. No, I won't leave you hanging on that thought. (Although I wouldn't mind a little sympathetic commenting, ego petting and otherwise generous lavishing of love and cheer). However, I will first take a brief detour by recounting the last few days of thoughts and events before I acquiesce to your heartstrings and tell the WHOLE truth about my garage status because unlike my RADlet, I'm not afraid of the whole truth.
Many years ago, I sang on a church worship team. This, after several concerts at the university choir level, a few small ensembles, several solos, assistance with the college campus ministry praise team, and other such exciting events involving music; primarily my vocal cords with some piano. In fact, I once played a fugue for a church new year's eve coffeehouse gathering. That is, a fugue introduction of three pages adapted to a contemporary christian song. The score was written by Rich Mullins, the vocalist was Amy Grant. Yes. I sang and played. Simultaneously.
May wonders never cease.
Why did I choose this particular song for that event? Because when I was 12, I'd decided I would learn how to play it, I would perform it, I would, yes, I would. Then one of my older sister's friends came over to hang out. She sat down at our piano and began to play it. I was enthralled and told her of my desire to accomplish the same goal and she said I couldn't do it.
All my life, I never understood why I continually met roadblock after roadblock in my attempts to sing and be musical. I got mixed reviews. Many said I had the voice of an angel, many others laughed and jeered. Literally. In my face. (Wish I was kidding.) It has been split down the middle, 50/50 for whether or not I have had any musical talent to speak of. And so, with 50% negativity to go on, I began to believe it. Except when I didn't.
I practiced that fugue. Sissy and AB were tiny babies, soaked diapers, hungry, needing naps and I played and played and played until I perfected eight bars and then I'd return to my maternal duties. I had every.single.note. Every one. And I showed up for the coffeehouse, my score copied and taped out on one long piece of cardboard. I got laughed at for that too. Oh well, I guess cardboard is funny. Then I played.
And sang.
If mouths make sounds when they drop, I heard it but I didn't look up at the audience. I was lost in the music. When I played the last note, I got a standing ovation ... from some.
Six months later, while rehearsing with the praise team, the worship pastor was making some minor adjustments to the alto and soprano lines. We were in a small cluster around the piano with our written music and one acoustic guitarist who was warming up. Four part harmony with the worship pastor as the lead. I asked him what note I should change my music to within a particular bar and his wife, who had taken a dislike to me said rudely before he could answer, "Can you even READ music?!?!"
I had the thought to walk off the stage right then and there, toss my music on the ground and never look back. I wish I had done that. No one else said a word. They all just stared at me. It was her mother-in-law, seated at the piano who vouched for me, "She played a FUGUE at the coffee house!" And I said nothing.
Why? Why did I say nothing? Because I thought the right thing to do was to say nothing, to turn the other cheek. Shortly afterward, we switched churches (there were MANY reasons, this one incident was by no means the impetus for our exodus) and found ourselves at another church with a praise team. They held auditions. I went. The worship pastor loved my singing, couldn't say it enough, wanted me on his team, told me i was definitely on the team and then by email a few days later said, "i've decided that it would be awkward to have a soprano on the praise team when I'm the leader and I sing the lead. It would be too heavy on melody. I don't need you."
After so many years of rejection, meanness, and downright disdain for who I am as a person and the talent I felt my genetics had afforded me, I vowed to never sing for an audience again. Never. And over time, my piano gathered dust. And that talent was expediently eradicated by Sissy who raged every time I played. And I do mean, EVERY TIME. Perhaps I practiced the fuge once too many when she was a toddler. Or more likely, in her RAD mind, a happy mom is a mom to take issue with. Because music? It makes me happy. It is my soul. It is who i am.
Lately, I've not been allowed to be me. I've had to be who the therapists and doctors need me to be for Sissy. I've had to be who AB and WG need me to be in all the crisis. I've had to be a steady force for The Dad because he's had to surrender so much too. So when Sissy returned and the discussion to keep her safe room as bare as possible came up, the matter of her displaced possessions came up. After calling a local piano company to size up the issue of our 120 year old baby grand upright piano with ivory keys, the decision was easy. "An explosion waiting to happen" she said. "Tuning such an old instrument will put too much stress on the harp. It has lived it's days." She recounted how several older pianos had recently met such a fate locally and how her company had been called to help clean up the messes.
It's gone. I paid them $175 to take it away and dispose of it properly with the promise that we would make a family Christmas gift of a keyboard this year. Then I bought stack-able cubby storage bins and as Sissy has earned them back, filled them with her possessions.
Where do you go after that emotionally? 25 years that piano has been with me. I've wept and pounded out my sorrows on those keys, I've sang and sobbed. I've put many therapy miles behind me through music. For me, it boils down to the cruelty of humanity, sin and brokenness that I now find myself equally broken and trying desperately not to be equally cruel. With all that has happened, I still find the need to turn the other cheek.
Who am I now? I ask myself. What am I? What is my purpose? To be Sissy's therapeutic caregiver? Christians like to say pretty things like, "God gave you Sissy because He knew you could handle it." or "Being Sissy's mom has made your faith stronger." or the one that stings the most, "if you'd had biological children, they might have had special needs." Really. By God and all His power, I am not, nor will I ever be defined by Sissy. I am not nor will I ever be defined by the humans that have judged my musical abilities and found them wanting. I am not nor will I ever be, by God, a parent that is labeled an abuser because Sissy is too much for one mother to parent.
Sissy had a string of good days. It made me nervous because we made it past the three day mark, her typical "and now I'll be good for three days" cycle. She was a little wobbly on the fourth day with a mild tantrum but she got through it with little consequence to anyone. Then Saturday she was "off". It was as if she wasn't connecting with reality, space or time. She was physically present but not mentally. To prevent a rage, I gave her a v.istaril as a precaution.
Sunday came and I said to The Dad, "I can't quilt. Sitting here in this tiny house at this table, cooped up indoors with the kids at each other's throats, I can't quilt. I'm moving the operation outside." So we set up an old kitchen table on the back porch and I quilted while WG played and talked and Sissy whined, moaned, bemoaned, dozed, napped, complained, paced, ugh. She drove me insane. The words of the therapist echoing in my head from the week before, "if you're feeling annoyed, she's trying to get attention. Call her bluff by providing POSITIVE attention." So I tried. A colossal fail.
"Sissy, come sit with me." She tripped and knocked over stuff, moved my stuff, huffed and fumed, fussed and moaned, harrumphed and complained. Finally I said, "Sissy, why are we here?"
"huh?"
"Why are we here, born, on this earth. Why do we exist? What's the point?"
"To live."
"To live," I said to my ironing board. "To poop, pee, eat, sleep and work all day, every day until we die?"
"no."
"Ok, what is 'to live' mean to you?"
"UGH! TO LIVE!"
"So there's no other point to life?"
"NO!"
"And God would say...?"
"UGH!"
"Come on, you know this. Why did God make humans?"
"To live!"
"Change one vowel."
"To love," she muttered.
"Yes. To love. To love our family, our friends, our neighbors, ourselves, to love as God loves. Loving is hard for you isn't it?"
"sometimes."
"a very honest answer, thank you."
"Would you like a hug?"
"i'm hot!" whine, whine, whine, change of subject, blah blah blah. Sure, it's RAD crap. Whatever. I'm tired of her RAD crap. I'm tired of playing racquetball with her RAD crap. She lobs 'em hard and I have to hit the rebounds off the concrete wall without getting hurt, without cussing, without wanting to check her butt to the floor, without letting her know it hurts me. You know, turn the other cheek. Because she's not capable of understanding that depth of emotion. So I just have to suck it up and deal. Again. Like I did with the music and the piano and my career and my life. And at the end of those wonderful little chats, all I hear in my head is the conversation I'll have with her therapist about how it went when I tried her new approach to Sissy's behaviors. And in my head, i DON'T want one more 50/50 take on my ability to succeed.
Get this, I KNOW I can't succeed with Sissy. Have said it for a LONG TIME. But unlike Casey Anthony, if I surrender to my inability to parent my daughter, I'll be charged with willful abandonment and neglect, a third degree child abuse charge that will stay on my record FOREVER. Casey Anthony will likely be a multimillionaire with all her book and movie deals before Sissy gets her first period.
WG came to my rescue. "Mom? What can we do?" I said, "Why don't you girls sweep the pine straw off the trampoline and have some fun?"
"YEAH!" escaped WG's lips faster than my sentence was said followed by a "Come on Sissy!"
She waddled and lumbered to the ladder of the trampoline, took one step up and then said, "oh wait, I forgot. i have to pee." As she walked past me on the porch I eyed her surreptitiously. She caught my gaze. "Not that I'm trying to get out of anything or nothing. I really do have to pee."
"Mmm." I mumbled. Sissy went in, I watched WG sweep it off and jump around. Sissy eventually came out and took up residence on the swing under the tree. not trying to get out of anything my ass but of course, I said nothing. AGAIN.
Rain threatened to ruin my quilting so The Dad helped me walk the table around the house and into the garage. The garage door has not functioned properly for months making parking in it unrealistic as I would have to get out, open the door, drive the van in and then manually close the door again. One more household thing put on hold because our family has been in crisis for going on three years now. Let's not discuss the rotting trim, shall we?
Thus, I merrily quilted away until way, way too late in the night. Sissy went to bed without a rage and all was well. The last two quilt panels that I'm donating for the auction at the end of the month are nearly finished. I have a lamp, music, wifi, an, iron and ironing board, a quilt table covered in scraps of fabric that some readers have donated, camp chairs, bugs, it's been great.
Tonight Sissy was back to full on rage mode. A few days shy of her typical cycle. Nope, it has ABSOLUTELY NOTHING TO DO WITH HOW I'M PARENTING. There are NO THERAPEUTIC TECHNIQUES that are going to help this child. There is nothing. And I am going to become dust in the wind if this continues ad nauseum. Tonight she came out of the shower with her hair barely damp and her head band still on. "Um, yeah. Go back. That hair isn't washed." rage, rage, rage. blah blah blah. Whatever. She rewashed. Then rage, rage, rage until 11 pm because she couldn't sleep. Yeah, well, when she sleeps all day despite my incessant prodding and reminding her that she can't nap without consequences, it was still MY fault at 11 pm that she couldn't sleep. Oh, and the other gem for today, SHE offered to help me prepare the recycling to take to the center. I gladly accepted. Then halfway through said, "Don't you think you need to ask WG and AB to help?!?"
"uh, no. you OFFERED. Offering help is not the same as me TELLING you. Now do you WANT to help or are you hoping to get something out of it?"
*grunt*
Two minutes later, "Still, they should be helping."
I stopped. I drew in a deep breath and I calmly but deliberately said, "Sissy, 206 days you've spent in a hospital in the last 15 months. How many of THOSE days do you think WG and AB insisted that I get you from the hospital to come help me with the recycling?!?!"
"none?"
"If you can't help without keeping your mouth shut, then I don't want your help because that's not the kind of help I'm looking for."
She finished the job and then said nothing to me for an hour and the first words out of her mouth were "OH!!!!! you said I could blah blah blah"
Yeah, because I'm just so unjust and unfair. I'm THAT kind of mom. Yup. Yessirree. I suck. Horrible, wretched, loathsome woman that can't sing, play a piano, parent or quilt in her own gosh darned broken down, falling apart poor little excuse of a house that I try so very, very hard to take care of.
Yes, I've been relegated to the garage and I like it that way. Cause guess who I can't hear screaming when I'm out here? And guess who I can see coming before Sissy gets to tell her convoluted, twisted, narcissistic side of the story to?
Come join me. There's always coffee and free wifi and I have an extra camp chair to spare. I might even sing for you if you ask me kindly. I'll start with a rousing rendition of Henry the VIII.
See, if I was a RADlet, I'd just leave that sentence as it is, not providing any background information or further commentary to give the reader more insight into what exactly "relegated to the garage" means. Because if I were a RADlet, I'd prefer that my listener take a negative connotation and therefore be sympathetic to my perceived plight, however misconstrued it might be. Only the wise, cynical and cautious individual takes such open-ended comments with a grain of salt. And in most cases, that wisdom, cynicism and cautiousness are earned through painful stripes, welts and bruises from other equally idiosyncratic homo sapiens.
Ergo, yes, I've been relegated to the garage. No, I won't leave you hanging on that thought. (Although I wouldn't mind a little sympathetic commenting, ego petting and otherwise generous lavishing of love and cheer). However, I will first take a brief detour by recounting the last few days of thoughts and events before I acquiesce to your heartstrings and tell the WHOLE truth about my garage status because unlike my RADlet, I'm not afraid of the whole truth.
Many years ago, I sang on a church worship team. This, after several concerts at the university choir level, a few small ensembles, several solos, assistance with the college campus ministry praise team, and other such exciting events involving music; primarily my vocal cords with some piano. In fact, I once played a fugue for a church new year's eve coffeehouse gathering. That is, a fugue introduction of three pages adapted to a contemporary christian song. The score was written by Rich Mullins, the vocalist was Amy Grant. Yes. I sang and played. Simultaneously.
May wonders never cease.
Why did I choose this particular song for that event? Because when I was 12, I'd decided I would learn how to play it, I would perform it, I would, yes, I would. Then one of my older sister's friends came over to hang out. She sat down at our piano and began to play it. I was enthralled and told her of my desire to accomplish the same goal and she said I couldn't do it.
All my life, I never understood why I continually met roadblock after roadblock in my attempts to sing and be musical. I got mixed reviews. Many said I had the voice of an angel, many others laughed and jeered. Literally. In my face. (Wish I was kidding.) It has been split down the middle, 50/50 for whether or not I have had any musical talent to speak of. And so, with 50% negativity to go on, I began to believe it. Except when I didn't.
I practiced that fugue. Sissy and AB were tiny babies, soaked diapers, hungry, needing naps and I played and played and played until I perfected eight bars and then I'd return to my maternal duties. I had every.single.note. Every one. And I showed up for the coffeehouse, my score copied and taped out on one long piece of cardboard. I got laughed at for that too. Oh well, I guess cardboard is funny. Then I played.
And sang.
If mouths make sounds when they drop, I heard it but I didn't look up at the audience. I was lost in the music. When I played the last note, I got a standing ovation ... from some.
Six months later, while rehearsing with the praise team, the worship pastor was making some minor adjustments to the alto and soprano lines. We were in a small cluster around the piano with our written music and one acoustic guitarist who was warming up. Four part harmony with the worship pastor as the lead. I asked him what note I should change my music to within a particular bar and his wife, who had taken a dislike to me said rudely before he could answer, "Can you even READ music?!?!"
I had the thought to walk off the stage right then and there, toss my music on the ground and never look back. I wish I had done that. No one else said a word. They all just stared at me. It was her mother-in-law, seated at the piano who vouched for me, "She played a FUGUE at the coffee house!" And I said nothing.
Why? Why did I say nothing? Because I thought the right thing to do was to say nothing, to turn the other cheek. Shortly afterward, we switched churches (there were MANY reasons, this one incident was by no means the impetus for our exodus) and found ourselves at another church with a praise team. They held auditions. I went. The worship pastor loved my singing, couldn't say it enough, wanted me on his team, told me i was definitely on the team and then by email a few days later said, "i've decided that it would be awkward to have a soprano on the praise team when I'm the leader and I sing the lead. It would be too heavy on melody. I don't need you."
After so many years of rejection, meanness, and downright disdain for who I am as a person and the talent I felt my genetics had afforded me, I vowed to never sing for an audience again. Never. And over time, my piano gathered dust. And that talent was expediently eradicated by Sissy who raged every time I played. And I do mean, EVERY TIME. Perhaps I practiced the fuge once too many when she was a toddler. Or more likely, in her RAD mind, a happy mom is a mom to take issue with. Because music? It makes me happy. It is my soul. It is who i am.
Lately, I've not been allowed to be me. I've had to be who the therapists and doctors need me to be for Sissy. I've had to be who AB and WG need me to be in all the crisis. I've had to be a steady force for The Dad because he's had to surrender so much too. So when Sissy returned and the discussion to keep her safe room as bare as possible came up, the matter of her displaced possessions came up. After calling a local piano company to size up the issue of our 120 year old baby grand upright piano with ivory keys, the decision was easy. "An explosion waiting to happen" she said. "Tuning such an old instrument will put too much stress on the harp. It has lived it's days." She recounted how several older pianos had recently met such a fate locally and how her company had been called to help clean up the messes.
It's gone. I paid them $175 to take it away and dispose of it properly with the promise that we would make a family Christmas gift of a keyboard this year. Then I bought stack-able cubby storage bins and as Sissy has earned them back, filled them with her possessions.
Where do you go after that emotionally? 25 years that piano has been with me. I've wept and pounded out my sorrows on those keys, I've sang and sobbed. I've put many therapy miles behind me through music. For me, it boils down to the cruelty of humanity, sin and brokenness that I now find myself equally broken and trying desperately not to be equally cruel. With all that has happened, I still find the need to turn the other cheek.
Who am I now? I ask myself. What am I? What is my purpose? To be Sissy's therapeutic caregiver? Christians like to say pretty things like, "God gave you Sissy because He knew you could handle it." or "Being Sissy's mom has made your faith stronger." or the one that stings the most, "if you'd had biological children, they might have had special needs." Really. By God and all His power, I am not, nor will I ever be defined by Sissy. I am not nor will I ever be defined by the humans that have judged my musical abilities and found them wanting. I am not nor will I ever be, by God, a parent that is labeled an abuser because Sissy is too much for one mother to parent.
Sissy had a string of good days. It made me nervous because we made it past the three day mark, her typical "and now I'll be good for three days" cycle. She was a little wobbly on the fourth day with a mild tantrum but she got through it with little consequence to anyone. Then Saturday she was "off". It was as if she wasn't connecting with reality, space or time. She was physically present but not mentally. To prevent a rage, I gave her a v.istaril as a precaution.
Sunday came and I said to The Dad, "I can't quilt. Sitting here in this tiny house at this table, cooped up indoors with the kids at each other's throats, I can't quilt. I'm moving the operation outside." So we set up an old kitchen table on the back porch and I quilted while WG played and talked and Sissy whined, moaned, bemoaned, dozed, napped, complained, paced, ugh. She drove me insane. The words of the therapist echoing in my head from the week before, "if you're feeling annoyed, she's trying to get attention. Call her bluff by providing POSITIVE attention." So I tried. A colossal fail.
"Sissy, come sit with me." She tripped and knocked over stuff, moved my stuff, huffed and fumed, fussed and moaned, harrumphed and complained. Finally I said, "Sissy, why are we here?"
"huh?"
"Why are we here, born, on this earth. Why do we exist? What's the point?"
"To live."
"To live," I said to my ironing board. "To poop, pee, eat, sleep and work all day, every day until we die?"
"no."
"Ok, what is 'to live' mean to you?"
"UGH! TO LIVE!"
"So there's no other point to life?"
"NO!"
"And God would say...?"
"UGH!"
"Come on, you know this. Why did God make humans?"
"To live!"
"Change one vowel."
"To love," she muttered.
"Yes. To love. To love our family, our friends, our neighbors, ourselves, to love as God loves. Loving is hard for you isn't it?"
"sometimes."
"a very honest answer, thank you."
"Would you like a hug?"
"i'm hot!" whine, whine, whine, change of subject, blah blah blah. Sure, it's RAD crap. Whatever. I'm tired of her RAD crap. I'm tired of playing racquetball with her RAD crap. She lobs 'em hard and I have to hit the rebounds off the concrete wall without getting hurt, without cussing, without wanting to check her butt to the floor, without letting her know it hurts me. You know, turn the other cheek. Because she's not capable of understanding that depth of emotion. So I just have to suck it up and deal. Again. Like I did with the music and the piano and my career and my life. And at the end of those wonderful little chats, all I hear in my head is the conversation I'll have with her therapist about how it went when I tried her new approach to Sissy's behaviors. And in my head, i DON'T want one more 50/50 take on my ability to succeed.
Get this, I KNOW I can't succeed with Sissy. Have said it for a LONG TIME. But unlike Casey Anthony, if I surrender to my inability to parent my daughter, I'll be charged with willful abandonment and neglect, a third degree child abuse charge that will stay on my record FOREVER. Casey Anthony will likely be a multimillionaire with all her book and movie deals before Sissy gets her first period.
WG came to my rescue. "Mom? What can we do?" I said, "Why don't you girls sweep the pine straw off the trampoline and have some fun?"
"YEAH!" escaped WG's lips faster than my sentence was said followed by a "Come on Sissy!"
She waddled and lumbered to the ladder of the trampoline, took one step up and then said, "oh wait, I forgot. i have to pee." As she walked past me on the porch I eyed her surreptitiously. She caught my gaze. "Not that I'm trying to get out of anything or nothing. I really do have to pee."
"Mmm." I mumbled. Sissy went in, I watched WG sweep it off and jump around. Sissy eventually came out and took up residence on the swing under the tree. not trying to get out of anything my ass but of course, I said nothing. AGAIN.
Rain threatened to ruin my quilting so The Dad helped me walk the table around the house and into the garage. The garage door has not functioned properly for months making parking in it unrealistic as I would have to get out, open the door, drive the van in and then manually close the door again. One more household thing put on hold because our family has been in crisis for going on three years now. Let's not discuss the rotting trim, shall we?
Thus, I merrily quilted away until way, way too late in the night. Sissy went to bed without a rage and all was well. The last two quilt panels that I'm donating for the auction at the end of the month are nearly finished. I have a lamp, music, wifi, an, iron and ironing board, a quilt table covered in scraps of fabric that some readers have donated, camp chairs, bugs, it's been great.
Tonight Sissy was back to full on rage mode. A few days shy of her typical cycle. Nope, it has ABSOLUTELY NOTHING TO DO WITH HOW I'M PARENTING. There are NO THERAPEUTIC TECHNIQUES that are going to help this child. There is nothing. And I am going to become dust in the wind if this continues ad nauseum. Tonight she came out of the shower with her hair barely damp and her head band still on. "Um, yeah. Go back. That hair isn't washed." rage, rage, rage. blah blah blah. Whatever. She rewashed. Then rage, rage, rage until 11 pm because she couldn't sleep. Yeah, well, when she sleeps all day despite my incessant prodding and reminding her that she can't nap without consequences, it was still MY fault at 11 pm that she couldn't sleep. Oh, and the other gem for today, SHE offered to help me prepare the recycling to take to the center. I gladly accepted. Then halfway through said, "Don't you think you need to ask WG and AB to help?!?"
"uh, no. you OFFERED. Offering help is not the same as me TELLING you. Now do you WANT to help or are you hoping to get something out of it?"
*grunt*
Two minutes later, "Still, they should be helping."
I stopped. I drew in a deep breath and I calmly but deliberately said, "Sissy, 206 days you've spent in a hospital in the last 15 months. How many of THOSE days do you think WG and AB insisted that I get you from the hospital to come help me with the recycling?!?!"
"none?"
"If you can't help without keeping your mouth shut, then I don't want your help because that's not the kind of help I'm looking for."
She finished the job and then said nothing to me for an hour and the first words out of her mouth were "OH!!!!! you said I could blah blah blah"
Yeah, because I'm just so unjust and unfair. I'm THAT kind of mom. Yup. Yessirree. I suck. Horrible, wretched, loathsome woman that can't sing, play a piano, parent or quilt in her own gosh darned broken down, falling apart poor little excuse of a house that I try so very, very hard to take care of.
Yes, I've been relegated to the garage and I like it that way. Cause guess who I can't hear screaming when I'm out here? And guess who I can see coming before Sissy gets to tell her convoluted, twisted, narcissistic side of the story to?
Come join me. There's always coffee and free wifi and I have an extra camp chair to spare. I might even sing for you if you ask me kindly. I'll start with a rousing rendition of Henry the VIII.
Yes, I really did play this song and sing it.
Seems the insanity of life and woeful state of humanity
has reduced me to a wise, cyncial and indulgent curious type
so that this song is more befitting of my current life.
Saturday, July 2, 2011
Full Score
When the heart is empty
But the head is full
There is much to be thought
There is taffy to pull.
When the heart is empty
The thoughts have no end
Neither song will lift the spirit
Nor a hug from a friend.
When the heart is empty
Nothing slakes thirst
The mouth gets dry
and drier still;
The emptiness might burst.
When the heart is empty
It solicits overflowing;
All beauty in the universe
Wanes though it be glowing.
When the heart is empty
No river satisfies;
An ocean full of salt
Denigrates and denies.
When the heart is empty
The struggle is the mind.
Overtake the brooding
That causes sight to blind.
When the heart is empty
It robs the eyes that see
Of colors, vibrant, flourishing
Of visions to be free.
Yet though I try to stop the mind
From draining my poor heart
By filling it with pretty thoughts,
With beauty and with art,
My heart beats slow
And slower still;
Nary a drop
Of blood will fill
Til oxygen flees from ev'ry part
Slowing the mind
To the very start.
In the distant rumbling
Paces of life march on.
A beat that echoes tirelessly
Be thou ugly duck or swan.
The steady thrum is pulling
Beseeching the weary soul
To come alive once more
To not surrender the whole.
Answering the engaging call
Is a heart not yet laid bare.
Beating tandem with the throng
A pulse of love flows there.
Beat, heart, beat I say!
The end is not so near.
Though dark the hour still may be
There is less and less to fear.
Find a rhythm strong and fierce
Awaken the darkened wit.
Embolden the colors of life anew
With wisdom you must admit
The mind is the enemy
It out thinks delight
It burdens the soul with heaviness
It blocks out the light
Until the heart does cease and quit;
To feel the pulsating beats within
To know the life that it has lit.
So beat the drum with fists of rage
Til the heart is full once more.
Squelch the zealous, pensive mind
With love and life full score.
Subscribe to:
Posts (Atom)