Wow. I did not mean to start such controversy! But then, I love it. Several topics in this post.

The odds that the physical therapist of the last two posts has even seen my original email (with my snarky clause, as opposed to a Santa clause, of course) are very slim. It was actually written to two people who are not real fond of her. My reaching out to apologize to her is probably not wise, I have apologized to one recipient, so far, for my snark.

Rose commented:

SingleDad, I’m a long-time lurker on your blog. You helped me a lot. So let me say this: you’ve been growing progressively more bitter. Your bitterness is completely justified, nevertheless you sound more tired and more heartbroken lately. Please take care of yourself. Get a massage – and not the erotic kind  do something physical for yourself which is not about relationships.

I think that over the past year I have grown somewhat more bitter, but that is turning around. It’s been 19 years in this club, more than half of them alone. It takes its toll. Last spring was tough, but life is looking up. As for the massage, that is a good idea, but come on, no happy ending? I don’t know if that constitutes a relationship …

As for Marie’s comment:

Sorry to tell you, people are only human and they make mistakes. Let. It. Go. It’s Christmas dude!
When you behave like this it makes it hard for staff at the school to take good care of your daughter. You get more with honey than with vinager, and let me tell you, I’ve been reading your blog for awhile( read the entire thing actually) it kills me when I see you pick on folks that can’t fight back. Lighten up a little.

Well, Claire did a great job on the first part of it, and Phil put it in an interesting light when he said “Honey attracts flies the same way that shit does.” Besides, Marie, when have I ever picked on someone who can’t fight back? Decidedly not my style.

I have received some push back on the idea that if you are not in “the club” you can’t understand, you don’t get it. Well, to that I say, even many of you in the club don’t get my sub-club! Let me explain my point of view.

First, here is a link to a short blog post that Barbara sent me, I found it a good introduction to the topic and just want to share.

None of this is here to elicit sympathy, pity, nor any emotional response. It is not easy to write, but it is the way it is. The point of this is to explain why you don’t get it, why you can’t.

I have no clue what it is like to have my child run up to me and be excited to see me. I have no clue what the feeling is when your child says “I love you.” I have seen it, I have been next to people when it has happened, but yet, I have no idea. I know better than you the feeling of NOT feeling it. That I get. All to often.

I have no clue what it is like to have your child cuddle you. No clue what it is like to have the school or police call because my kid has been caught with drugs, having sex, punching out someone, winning a spelling bee, getting an A. I don’t pretend to understand, even though I was that kid …

For nineteen years, my children have never looked me in the eye. Never said a word, never acknowledged anything. Several of my favorite bloggers in this “club” have children who give some response at times, and have other normal kids (yeah, yeah, “typical”). I don’t care what you say, what you think, you cannot fathom nineteen years of not being acknowledged, spoken to, thanked, cursed, teased, played with, run to, … nothing. A gerbil gives you more.

Can you fathom your child coming home with welts on both arms and no one explaining? No clue what really happened? For days?

Some people outside the club should get it, no? How about the special education teachers? The experienced ones? Yes, the ones that write in progress reports, “Pearlsky made the correct choice between two offerings 70% of the time.” Sounds reasonable, right? The choices were Pediasure and apple juice. WTF? Yeah, you get it. Which one is the wrong choice, moron? How about the school nurses? Learning that for four years your child was fed gruel as opposed to “typical” food like she gets at home? Refusing for four years, against orders from three doctors and the department of health, to give my daughter her life sustaining amino acid? Yep, nurses should get it. They don’t. Social workers? “How do you feel about having a severely disabled daughter?” Good question, yeah, sure, you get it. How about a nurse, on her own, trying to hire morning help for you since you should not bathe nor dress your own teenage daughter? Do you know the (humiliation? anger? resentment?) that goes with that?

When was the last time you spent hours holding your teenage daughter as she was riddled with seizures? During the middle of the night? No one to help, nothing there but you, your beloved everything, the only thing in the world you adore more than life itself, seizing, her brain being wracked by the forces of hell, and you are helpless. Where’s your god then? Do you have a clue how that feels? How that changes your view of the world?

The lord only puts on your plate what you can handle. Yeah? Fuck you.

Every experience we have makes us who we are today. Friends have told me stories of their past that they feared would make me change my opinion of them, but the truth is, whatever the story, it made them who they are today, and that is what counts. Same with me. These experiences have made me who I am, for good or bad. Some of you have had some of them, and get it. But how much? I don’t know.

The people that fully agree with me that they don’t “get it” are actually the closest to me. The women who know what my heart beat sounds like admit they can’t conceive of it, even though they witness it, live some of it with me.

Pearlsky has a soul, there is no doubt. She has a personality and a mind. It is just not available. Sometimes there are interactions that bring tears to my eyes (in a good way). Other times, it is like there is nothing there … an empty shell. That brings tears as well.

I believe there are many caregivers that read my blog, many are entering the field, and are learning many things, trying to understand, trying to “get it.” That is commendable, I feel both honored and a responsibility to help. I lay it out as it is, and yes, you will learn (not to be pompous) from it, but there is a level you won’t get to. If learning about Pearlsky and me helps, helps give you the ability to empathize, the knowledge of what may or may not be appropriate to say, then I have done some good.

Truth is, I hope you never get it. I hope you never join the club. But don’t think you really truly “get it.”

Kelly comes close to getting it, Chris is much like Pearlsky in many ways. But then, she has three normal kids as well.

It has been tough. Nineteen years. Yes, I am tired. Yes, I am jaded. But my life is more than Pearlsky, even though she is my whole life. Make sense? To me, yes, but do you get it?

Am I depressed or suicidal? Hell no. But, if the plane on it’s way down I won’t be screaming. I just hope Pearlsky is with me.

Until then, I’m going for the massage with a happy ending. I wonder if Freya knows how to give a back rub …

Let’s say you are a cat lover. Unfortunately your cat has some problem and needs medication every day at noon (I actually spent a year giving a cat insulin shots daily), so you hire a neighbor to do it since you work. One day your cat is really sick, almost dead, you take it to the vet and then find out that the cat has not had it’s medication for over a week. You call the neighbor who says “oh, I thought the cat was better, sorry.” You have no choice but to keep using the same neighbor.

Or how about the fact that your mother has Alzheimer’s and is bedridden. Unless she is physically turned and moved a couple of times daily she will get bed sores and worse. You visit every night, there really isn’t much talking, but you are there. One day you notice some blood on the bed, and find out she has awful, bleeding sores. You go crazy with the staff and they assure you they will turn her everyday, but that staff is gone by the time you visit.

Would you ask the neighbor to mark off on a chart or something when s/he gives the cat medicine so you know? Would you want to know every night that your mother had her position changed? Do you deserve to know?

Yes, I am referring to the previous post.

Two summers ago, Pearlsky’s physical therapist told the summer staff that Pearlsky did not need PT during the summer (violating doctor’s orders, violating Pearlsky’s IEP … see the end of this post and many others). How did I find this out? It became impossible to get Pearlsky to bend properly to get her in her wheelchair in the morning. I finally called the school to see if they had a clue as to what was going on and that is how I found that the PT cancelled Pearlsky’s mandated physical therapy.

Hmmm … is Pearlsky more important than a cat? Maybe I need to know on a daily basis?

The comments on the last post are interesting. Two woman, both of whom I know and respect, disagree with me that Pearlsky’s physical therapist should have to simply initial a piece of paper after the forty-five minute physical therapy session. Now, understand, I love a good fight, a good argument, a disagreement but this is a tougher situation.

When I was teaching at the University, fairly early on, DR came into my office (this left such an impression on me, I remember his name after 30 years) and we discussed something he was designing / researching. Three months later he came to talk to me and all his work was a failure. I asked why he went down the path he did, and he said that it was because of my suggestion. I asked if he thought I was right at that time, he said “no,” but I was the professor.

Since that day I taught every single student I ever had to argue (appropriately) with me on any engineering point until one of us “wins.” Design and engineering often includes life sustaining / threatening things, you have to get things right. Being a prof does not mean always being right.

I am not going to argue the PT / silly note point; some of you did very well in the comments. (Hey, Elizabeth, if that husband of yours runs away with the mistress, give me a call, will ya?) Why won’t I?

I do not want this to come across wrong … but I won’t argue the point because unless you are part of “our club,” as I have said many times before, there is NO WAY you can have any clue as to what life is like. None. Nadda. Unless you have a severely disabled, non-verbal child you have not only not “walked in my shoes,” you have not even been in the shopping mall where the store is that sells those crappy shoes. See that tab on top of my blog that says “Shoes”? Go read what it says, it is short. Go ahead, I dare you.

Some of you are in my specific club. Pearlsky has NO communication, yet it is me who is in the dark. I rely on others to tell me who her day was, why she has mysterious welts on her arms, etc. Many of you are not in this sub-club, your kids can tell you something. But in a larger sense, many of us, are in the club. I know I have readers who are care givers, teachers, social workers (yep, one or two even like me), therapists, at least one lawyer, a couple of goddesses, but most of you are parents. You get it. Aphrodite got it, she had a kid in Pearlsky’s sub-club. Freya gets it to a great extent, but even she will admit not getting it 100% although she has a child with a disability and is surrounded by this population daily and has worked with them extensively and loves Pearlsky.

One of the commenters that disagreed with my wanting the notation of physical therapy is a very intelligent, wonderful woman, but alas, she is single and does not have children. The other is a physical therapist, actually a PT for a school district, and is a mom of “typical” children. Again, I know both, have met both (one I have known for years), I respect both, but they have a different point of view. I am not going to argue my point. No need to, mine is out there, so is theirs. And I always welcome comments. Any comments. Please keep them coming.

Any of you that have a “holiday tree,”  … happy holidays.

If you have a Christmas tree, then Merry Christmas.

If you have something else, then have a great something else or at least a great weekend.

Me and Pearlsky? We are off to light our “holiday candle holder.” Then some Chinese food.