You know things are bad when …

… a fellow blogger that you had some not so nice words with a few months ago writes you twice in one day to see if you are ok since you have not blogged in a while … and then also writes to offer words of support. Thanks, H. Actually, several of you have written and it is appreciated. More than you know.

Things have been tough. Actually, I totally “lost it” at one point last week finding myself in a position that grown men don’t get into, in a place where grown men don’t lie, doing what grown men don’t do. Glad no one was here but Pearlsky, and hell, she won’t tell anyone.

  • Pearlsky’s mom called about a week ago. She asked when Pearlsky’s birthday is. Yeah, she did. It’s today, by the way. Nineteen. Nine-freaking-teen.
  • I was ten when Pearlsky was born. Can’t figure out how I turn 53 tomorrow then.
  • People think I am stupid or clueless or something. There is a guy that works in Pearlsky’s classroom that I have known for over ten years. Good friend, but no one knows that. He tells me stuff. Then the teacher (a new guy, ex-marine I think) writes me an email and tells me something very different. Then the Goddess of the School tells me stuff. The teacher out and out lied that he was able to feed Pearlsky successfully. Is this to make me feel comfortable when her aide is out? Truth, by two witnesses, is he was not able to. “… didn’t seem hungry when when I first tried to feed her but the second time everything went just fine.” Umm, no, not according to others. They say you could not feed her at all. Wtf?
  • Mom wants to know what Pearlsky would like or appreciate for her birthday. Umm … mom? Pearlsky does not interact with things. She seems to enjoy music, but, well, the list ends there. How do I explain to her, or just about anyone, that nothing seemingly makes a difference to her. How do you say to your wonderful, loving, intelligent mother, “No Mom, Pearlsky does not have a clue. It does not matter what you get her or if you get her nothing at all”? You don’t.
  • Biopsies stink. Waiting for the results of a biopsy is the worst. Getting pretty good results is not great, but good.
  • Let’s say one of your closest friends, confidant, is a big shot therapist, very intelligent, a simply amazing woman. And let’s say you get a text message at 2 A.M. asking if you are awake. And you say yes and ask why. And she calls. And she is having a first class panic attack. Then what? Isn’t this, like, backwards? She claims I was a great help. Who knows?
  • Pearlsky is not going forward. She is not going backwards, but not forward. What’s the point?
  • So I am at this big meeting, gathering, important kind of thing. And there is this religious guy there, happens to be the one that told me, when Pearlsky was about five hours old and was in the neonatal intensive care unit, “God only puts on your plate what you can handle.” Yeah, knew then he was an idiot. An educated, learned idiot, but an idiot nonetheless. But I digress, so about a week ago we are at this thing. And trying to be polite I ask him how his son is. His son is mid-twenties, damn good looking guy, personable, but has had “focus” issues, and some real medical issues over the years. He is on the six or seven year undergraduate plan, but making it. I really like him, good guy. So the idiot says, “He is taking time off from school, trying to do some work, still at home, having a bit of a hard time.” Then, while looking at Pearlsky he says in all seriousness, “They call it failure to thrive.” No, asshole, they don’t. Now apologize.
  • Ever watch Tosh.o on the Comedy Channel? It sort of reflects my life.
  • Pearlsky’s mom came over today to see her for her birthday. First time this month. No present. She did raid my refrigerator though. She did turn Pearlsky’s wheelchair to face her while she was on the sofa eating and talking to the nanny. Then she left. All in all about twenty minutes, and two helpings of tuna casserole.
All in all, a tough spell.
Happy birthday Pearlsky. I adore you.

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