Here for the long haul

That last post got a lot of attention from all different angles. Here goes another, on the same topic, so make sure you have read it! My inner most thoughts in what should be my last post ever, but won’t be.

Let’s start here … I make every decision for Pearlsky that there is. I guess she may on some level decide which way to swing her arm or where to look, but even that is not clear. I decide everything. What she eats, when she eats, what meds, what she wears, where she goes, when she goes to a doctor, everything. I decide if we will do the “Ashley Treatment” (growth attenuation, too late now) to a great extent. I, along with her mother, decided if she should have been aborted. If one believes in euthanasia, then it would be me who would make that ultimate decision for Pearlsky, do I “pull the plug”? We make life and death decisions every day, not all of us, but look at countries abroad, decisions are made to exterminate their own people. On the battlefield, you don’t think solider’s shoot their buddies to alleviate horrendous pain to hasten the end of life? Bad guys shoot good guys, good guys shoot bad guys, good guys shoot good guys, crazies kill others. Doctors and families make life and literally death decisions daily. Our culture, our society, our species does participate in ending the life of our own. Right or wrong, we do.

Suicide. Most think it is wrong, many religions do, and there are laws against it (which I don’t really get, but that is not the point). I understand suicide. I know many forms of mental illness bring it on, but many other things do as well. I get it. Terminally ill people, especially those in pain, do you blame them? The solider on the battlefield with the horrific wounds, do you blame him or her? The 90 year-old who just lost his or her spouse and has nothing left, do you blame them as well? I personally, first person, know all too well the torment of bullying, and understand those suicides, as horrific as they are. Dealing with a severely disabled child. Both his or her physical issues, the social issues, the school issues, the daily issues, the everything there is, all you have, and the everything there isn’t, all you are missing. There are so many ways these can be avoided, but when the situation is upon you, when you are under the burden, the crap, the suffocation of it all, that may be the only escape. I get that.

Do people ultimately have the right to suicide? I questioned this in the past, but I now believe that yes, it should be a right; especially if it is an informed decision. That is a tough caveat because what degree of mental illness takes away the ability of an informed decision? I don’t know. Can Pearlsky make informed decisions? We don’t know, and probably never will. Can I? Yes. Do I have the right to make informed decisions for Pearlsky? I do. All day. Every day. Repeatedly.

What is Pearlsky’s quality of life? I have no idea. I do believe it is good, others think so as well, but is it? Does she know that she is severely disabled? Does she know that she never sees anyone worse off than she is? (I decided to mainstream her in school so she would always be around others better off than her so she could strive for more, as opposed to be only around others the same or worse. I fear I chose wrong.) Does she know she cannot talk or communicate? Imagine the tremendous frustration if she does. The horror of being locked in. Would I wish her condition on anyone? No, absolutely not. Do I carry the tremendous guilt of bringing a second person into the world in the same condition, yes. That is a horrible weight on me.

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I have had the worst year of my life in many ways. I have had crushing disappointments and dreadful experiences with Pearlsky. I was abandoned at the lowest points I’ve been. Pearlsky was molested and at one point we believed potentially violated (I can’t even write the other word) and I could not protect her. At a point when I was so low, never lower, I desperately called the one person I thought I could count on and she would not talk to me because she was eating a sandwich (don’t ask). Don’t know whether to laugh or cry now. There were absolutely days I did not want to wake up. I did nothing to foster it, but those days were there. I found myself alone. Even in a crowd. Those who professed love were not there. Just alone. I can handle all the crap in my life, we all have it, but the addition of loved ones not just not being there (that I could deal with), but adding to the shit? No. Pearlsky was hurt, she had some health issues not spoken about on the blog, my mom has been having issues, and I can go on …

Alone. Raising Pearlsky. Dealing with work, her school, my life. Trying to survive any way I could.

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I am sitting in a room with the Superintendent, Assistant Superintendent for Student Services, Director of Special Ed and Pearlsky’s mom. I am trying to explain to these educated people a bit of where I am coming from amidst a criminal investigation. I look the Superintendent in the eye and I say …

I bet you and I start every day the same. I wake up, wiggle my toes, stretch and get out of bed. Same as you so far? Ok, and then everyday for twenty years, I walk down the hall, and guess what I do? I walk into my daughter’s room to see if she is alive. Every day. Twenty years. I know that the odds are she will die in her sleep. And the odds are the same every night. Twenty years. I go in her room and see if she is alive. I then dress her and send her off to you for eight hours and pray she comes home in the same condition I sent her in. And she does not always.

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I do not want Pearlsky to outlive me by a single day. I cannot imagine how she would be taken care of, loved, etc. Is that ridiculous? I hope so, but I think many of you understand what I am saying. Yes, I want the LHC to cause a black hole and in an instant life as we know it will cease to exist. Now that would be cool. But, alas, it is not going to happen.

At the darkest, yes, I understood suicide. Clearly. Absolutely an option, and why not? Well, here are some of my reasons why not.

Mom. I will not do that to my mother. Period. Not while she is alive.

Pearlsky. I won’t leave her here.

Now let’s combine the two. Pearlsky and me. I adore Pearlsky. She is my life, maybe that is one of my problems, maybe not, but it is the reality. She is my everything. But what of her life? If she is aware, and many think she is, then her life sucks pretty much as well. Her seizures, being molested, her lack of communication, her crying for no apparent reason (to us), her having to be cared for to such a degree. Dignity? Self-image?

If things are so bad that I cannot get out of my hole, if my world is collapsing around me because I don’t get the love and support I need and deserve, if I cannot deal with the hell being thrust upon my daughter, how both my daughter and son were cursed with their medical condition, and I make the informed decision that I have simply had enough, then don’t I do the most loving thing in the world, don’t I make the decision that enough is enough and take Pearlsky with me?

Not out of anger, hate, malice, but out of love and devotion? Yes, many of my problems would go away if Pearlsky did, I realize that. But Pearlsky is not going anywhere. She is not going in a group home, to her mother, nor anywhere else. Our love and bond is too strong. But what if we both go together? I make every decision for me, I make every decision for her, hence, I make our decisions. And she sure as hell is not going without me. Anywhere. Ever.

I understand the woman in the article in the last post. She did not attempt to only kill her daughter. I know I am assuming, but there was no malice. She wanted, and attempted to kill her daughter and herself. To continue to be with her, but in a better place perhaps. Or maybe just to be out of this horrible place she was in. I do not believe she tried to kill herself out of guilt or to evade responsibility. No, it was desperation. It was a bond with her daughter. There was no malice.

No, I won’t do it. For many reasons. My luck I would change my mind half way through and it would be too late. Or only one of us would pass. Or simply because it is wrong. It is wrong. And, again, that mother thing. I won’t. We are here for the long haul. Life is too precious.

And I won’t do it because life has improved. Others are coming into the picture, people who really do care, understand the words love and adoration are stepping up to the plate. I get an oasis every so often, a weekend away, a weekly tango lesson, a few days in Miami, a few in San Diego, a long walk on a beach, a barrel over Niagara Falls, a wine weekend at some vineyards. A Skype call, some midnight texts, whatever. I am not at the bottom of the hole anymore, and I won’t be going back there. But I get it. I get it. Been there, almost done that.

What the woman in that article did was wrong. Period. We have laws. But we also have compassion and empathy. Is she really a danger to society and should not have bail? Arrest, yes. Trial, yes. But no bail? There is so much wrong with that story, or just missing. How could a spouse, if there is love and adoration (and that is the ONLY spouse I will have) not have seen the depth of her despair. Did she reach out to him but alas, he was eating a sandwich? How could the school have apparently made some gross errors (hinted at in the story, I do not know)? Yes, she was wrong. But. How does society (macro or micro) gain from punishing her? How much does it lose if we don’t? I don’t know. But this I do know, I will never be on that jury. Maybe I am among the best to judge her, but I won’t. I can’t.

Those who follow this blog know what scares me most. What has kept me up at night on some occasions, the thing I dread facing most … Pearlsky in heaven. When Pearlsky can talk, and what she will say.

What stops me from doing it? The fact that if I do, and we are in heaven, and what if she turns to me and says, “Damn it Dad, I was having a good time.”