30 September 2011

Under certain circumstances, you may need to take steps to counteract someone else's wrongdoing, but it's better to do so without anger. That will be more effective, because when your mind is overwhelmed by a disturbing emotion like anger, the action you take may not be appropriate.” ~~ Posted on the Dalia Lama’s facebook page this morning.

I can’t get over thinking it is just a kick to get a facebook post from the Dalia Lama. Well, me and about 2 million other people, with about 15,000 “liking” the post. I don’t “like” it simply because I don’t want to get another thousand notifications that others like it, but he strikes a good tone for writing this morning. Anger. Anger and fear was all I was about yesterday.

In the afternoon and early evening, I wanted to get back to what I was writing about yesterday, but the day got in the way, as did strong emotions and going food shopping.

By the time I got to Marilyn’s for my own session yesterday at noon, I had done a fair bit of self-talking -- otherwise known as talking to myself, but self-talking sounds far more therapeutic -- and had a good cry. I began to see where I was coming from and how Julia’s behavior set off all my buttons and alarms.

First off, there was a lot about my reactions and feelings that just had to do with me. Apart from Julia and our relationship. It was me. And those needed to be understood and processed and then gotten out of the way. Primary among my baggage was my feelings of loss of control. I found myself crying about the fact that I could not save David and I could not save my niece, Jennifer.

I know I could not save David. Really, I have no rational guilt about that one. It was genetics, not lifestyle. Nature, not nurture. As I catalogue and read my blog, now back as far as January 2010, and during the sorting of his and our papers, I can point to circumstances where we may have made other life choices, but I don’t think that any of those choices, save one, would have changed the day on which David died. The only different choice we could have made came in November of 2009 when David refused a heart that may have been compromised. It was the first offer of a heart and a hard decision to make. Maybe it would have been a better match. Maybe because of some environmental factors - the cold especially -- his behavior after transplant might have been more circumspect, he may have been more careful with himself and not gotten the infection that he wound up with. But then again, that heart may have been compromised and left him with complicating diseases or conditions, and who knows what other bacteria were lurking in cozy winter places to attack. One possibility of a wrong decision, and it is only a possibility, in 55 years of living does not make for guilt.

After that rational explanation, the truth was that yesterday, there was no rational. I cried because I had no control over David’s death. I was deathly afraid that i had no control over Julia’s hurting herself.

Which brings me to Jennifer. She died at 19, at her own hands. She was a cutter, hospitalized at least twice for hurting herself. Looking at Julia’s hurt body -- with scabs all picked off -- I was thrown back to the cuts on Jennifer that I never saw. I did not even take the mortician’s offer of viewing her body before burial. (She killed herself with pills, not cuts.) It was a closed casket and I was more comfortable leaving it that way, although that was a mistake from what I see now. My imagining of a suicide’s body is probably far more gruesome than the reality. I was texting with Cheshire yesterday and when I mentioned Jennifer, she was a bit aghast at the comparison. She said that Julia was not hurting herself. And that was true, but Julia did not/ does not stop her picking when it hurts. And I am not talking about picking one scab. No, 42 scabs. (More about that later).

And then, there is the giving up on Julia, even for a morning. I realized that I was so hard on myself related to that because of my family of origin. My mother gave up on me very early and did not find her way back. Sure, she would say that it was my behavior that caused her to give up, but hell, she was the mother, I, the child. Blah, blah, you know where that goes. Coloring the mother issue is my continuing reluctance for the estate work -- I can neither forget about or really process the loss of my mother because I still get mail for her and take care of her stuff. I don’t mean to blame her for the leaky oil tank in her driveway -- LOL! I’ve blamed for for much in my life but I cannot believe that even she would die with such a legacy. This is my issue. I know.

So, by the time I got to Marilyn’s, I was able to separate my rage and despondency over my issues from what relates to Julia. Yes, it is a great loss of control and having a disabled child is the mega-teacher of control issues. When the student is ready . . . really, was a ready for this one? God, you do have a LOT of trust in me. I found myself saying to Marilyn how much I try to squeeze Julia into any part of the normal box that I can. She looks like a normal kid. She has a lovely body -- a NORMAL body! And I am so very scared that she will lose this -- the normal part. She stoops when she walks at times like older people with cognitive impairments. She shuffles a bit when she is not paying attention. Again, like older retarded people. She uses a big voice and big gestures when they are not appropriate. And all the other inappropriate things she does. I try to instruct, curb, change her to make her fit in as best as she can. I try to control her. And probably, I try to control far more than is necessary to control. Julia is who she is, and what she is. My parents tried to do the same to me -- and told me not to talk. That made me look normal. Indeed it did, and cost me my twenties on a shrink’s couch.

And I cannot control what Julia does to her body. In reality, if she becomes a cutter, she does. I can work towards healing her body, and ultimately her spirit, but I must acknowledge that she may be wounded far more deeply and far more extensively than my band of therapists and I can ever change. Like David’s “spectacular infection” that weakened his body and ultimately that new heart so much that he died, Julia may have a spectacular wound that can never healed. Even writing this is hard -- the strength to live it is unimaginable at this moment of writing. No, this doesn’t mean that I give up, or that I retreat from her in any way, but it is a possibility and could be a reality. Julia could grow up to look and act like a retarded adult, and she could grow up so wounded by her early life experience that she is never able to control her desire to hurt herself. And I have to let go of trying to control these outcomes. For all I can do, she will be who she is. Certainly, this is true about Cheshire. For all we did to mould and shape her, she is, on a very essential level, the same person she was as a very young child. For all the medication, meditation, strategies, practices, therapies, and special programs I can do for and with Julia, she is still herself, and only she will be able to heal herself. I did not have to work this hard to parent the essential Cheshire. It was all right there. I only had to step out of her way and love her. I know that I need to do more with Julia to get to the essential child, but like my task with Cheshire -- getting out of her way and loving her -- the task with Julia is the same. And this is a very hard task.

Coincidentally, although I am coming around to the idea that there are no coincidences, last weekend, I listened to a Love and Logic tape. I read some Love and Logic material when Julia was home for about a year. I liked it but did not find it all that useful in dealing with Julia who was so irrational and out of control. I could not work it down to her level as I was handling tantrums and melt downs. Could have been my failing, but be that as it may. But after last week’s listening, I can see it as a tool for letting go of imagined control I think that I should have and replacing control with responsibility, eventually the child’s responsibility for herself.

And so, Marilyn, saw some of the up side of my terrible morning: first, Julia responded to my terrible behavior. She was more compliant and tried very hard to follow my directions and to please me. It may be time for Love and Logic strategies. Second, Julia can be responsible for her behavior. Under dire circumstances, yes, but responsibly none the less. Third, I have a whole bunch of control issues that need working on. My control issues about others people in my life can be separated from my control issues with Julia. Fourth, we are assuming, and this was a tough stretch on my part at first, that some of Julia’s picking is very physical in nature. As the scabs heal, they itch and her attention is called to those spots. Assuming, at least for the moment, that some of this issue is really physical in nature, I have a call into our doctor to get some stronger anti-itch cream. Fifth, we had a good session with Marilyn. Julia was in my arms for most of it, cradled like a baby, as we talked about my anger and sadness and her reactions to it. And then about China a bit.

It always comes back to China.

Last night, after Julia’s shower, I put 42 bandaids on her active scabs. Some bandaids covered more than one scab. I wrote the number on our bathroom mirror. I told Julia that 42 scabs were too many. I don’t know if we are going towards putting bandaids on every night or something else but she is responsible to getting the number down. I’ll help, but she will have to do it. This morning we were back to following Julia’s morning map, strong sitting, and tapping. I continue to help her dress and do all of her readiness so she has no time alone to pick, but I will begin to fade that asap to get back to where she was following the map with minimal interference from me.

Another note on my feelings: yesterday, when I was self-talking, I came upon a feeling a real resentment that I was spending so much energy on Julia’s scabs when I should be dealing with my fallow year issues: healing, processing, and discovering purpose. This reminded me of a friend whose first sabbatical was spent, not in brilliant project work, but in gut wrenching personal work. We have to do the work in front of us. And the work of yesterday had to do with so much more than scabs.

The dog sits next to me as I type. I am sitting on one of the two chairs that I brought from my mother’s house that I installed in my bedroom. I’ve always loved this chair, and although I am not crazy about the material that covers it right now, I love the size and shape and the way that Latkah and I can enjoy the morning light coming in through my bedroom window. This is a good writing space. As I hoped it would be.

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