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.
I’ve been reading your blog for I guess two years now. I never ever commented. There didn’t seem to be any point. I couldn’t think of a single thing to say that would be useful to you, or helpful. And I still can’t. But I wish I could. You sound so very tired lately.
Happy Birthday dear Pearlsky. May you know your father’s love for you and may both your lives be filled with ease and humor.
SD, I’ve been thinking of you often lately. I don’t have any awesome words of wisdom or comfort, though I certainly wish I did; but, I do think you are one of the most amazing people that I have ever known of and if there is ever anything I can do – be a listening ear or anything, please let me know.
Happy birthday to Pearlsky; I hope you know how much your father loves you and both of you will have easier days ahead.
Happy Birthday, Pearlsky! Happy Birthday, Single Dad!! I hope you both had/have good days!
A very happy birthday to Pearlsky. Waddayaknow, the world didn’t end today after all!
You are a great dad, and that’s a far better gift than any iPod. Take care, both of you.
Your welcome, but totally unnecessary.
Good to have you back. I am certain you have been missed by many.
Remember what I said, 50’s are underrated. Suppose to be the new 30’s. However, I think that little diddy might have been spoken by someone similar to the idiot that started the rumor that “God will only give you what you can handle.” Hard to say though,but lets pretend shall we,at least for now, seeing the 5-0’s are right around the corner for me.
Wishing you a wonderful,wonderful day tomorrow.
Happy Birthday to you, and congratulations on helping Pearlsky reach hers. And enjoy the 50s. The 60s are a real adventure.
Happy Birthday, Pearlsky. Happy Birthday, S.D.
Wish I had a magic wand.
Thanks for coming back. We missed you.
I am sorry, but that woman is an idiot. Glad that there are people like you and although Pearlsky may not be going forward, that may be the fault of the school and not her (speaking as a teacher of kids with severe multiple needs for 17 year now).
… And Happy Birthday to you, too! You may want to let Pearlsky’s mom know that Pearlsky would love some good Italian food delivered by beautiful Italian goddesses. Just sayin’… 🙂
You and Pearlsky gift each other each day with love. Looks like the love you share is life sustaining, at least.
Happy birthday, Pearlsky darling!
Tell Mama to get her music or DVDs of the shows she seems to laugh at. At least, that way, you can sit near her and enjoy it together, even if there’s no way to know if P’s enjoying it. She probably is, in her own way, and if it’s a way for you to enjoy her company or enjoy something with her, than that’s lovely too.
And happy birthday to you, old soul. God grant you many more.
Happy Birthday, Pearlsky and SD. I hope you both had wonderful days.
Glad you’re back, SD; you were missed.
I know what you mean about being frustrated with thoughtless jacka**es; a friend recently called me and was “down” because her husband’s company recently got screwed over on a big contract. She said something like “yeah, things are so horrible; I can’t imagine it any worse than this.” I wish I could have responded with “Uhhh . . . read some of the blogs I do, and maybe you’ll rethink that.”
Happy birthday to you both! Welcome back. I missed you and I was worried.
So what do you think is worse…having a kid who stays the same year after year, no better no worse, and knowing why she is that way and that she won’t get any better?
Or…having a kid who is slowly getting worse, year after year, and not knowing why and having every doctor have a little light in their eyes when they first meet her like they are going to figure it out, and seeing the light go out when they don’t…and having her decline so slowly that you’re not even sure things are really changing until you look at old pictures from years ago…and not knowing why it’s happening and wishing you did because maybe there would actually be a way to stop it or even better…to reverse it…and wondering if someday you will find out what that thing was and what you could have done to fix it, but by then it will be during an autopsy?
I actually don’t know which is worse. It was an actual question. At least in the latter case, there is some possibility, however remote, that something will be discovered someday, and with that, a way to fix it. At the very least it will be closure.
I always come back to read the comments and there are so many good ones. Wish you had a “like” button.
I guess I was just hoping that you were super busy with your new project and that’s what had been preventing you from blogging. With that said, I would be lying if I were to say that Kev and I didn’t talk about you over numerous dinners over the past month or so – wondering why you dropped off the blogosphere.
I’m sorry you’re having a rough time. I’m sorry that people can be complete asshats. I’m sorry Pearlsk’s new teacher is being a douchelord. I’m SUPER sorry that Pearskly’s mom continues to be so disconnected.
If you lived closer we could drink our sorrows together. Take care of yourself and know that someone half way across the country thinks you are doing an amazing job.
oh yeah! Happy birthday to you and to Pearlsky!
Also, please pretend that I insertend an “away” between the “drink” the the “our” in my previous post.
I have to agree with Barbara – your love for Pearlsky is one of the best gifts that she gets – it is reflected in her eyes.
So sorry to hear that, one again, her Mom was…well, her Mom.
Happy Birthday to both of you and many more…
Your life should be a sitcom, a dark, dark sitcom.
As for the “failure to thrive” comment, the guy is an ignorant rhinocerous rectum.
Actually, I think “drink our sorrows together” is quite poetic. It’s what we do here on the blog: we are drinking our own sorrows, but we find the burden is oh-so-very slightly lessened coming together.
Pearlsky’s smile is almost enough to get you through anything. The rest of the time is simply awful and always will be because you are an insightful, caring, and strong person. It would be hard to be you, and I hope you know how glad I, and so many others, are that you exist. Happy Birthday… I’m glad you and Hannah are here!
Happy Birthday, Pearlsky. Happy Birthday, SD.
Happy Belated Birthday Pearlsky and SD! 😀
Happy birthday Pearlsky and SD!
I am sorry that you have been going through some tough times. I only recently discovered your blog, but have read most of it, and all I can say it that you are an amazing father! Pearlsky is one lucky young lady!
Thanks for sharing your life with us!
I would not have pegged you as a Tosh.0 fan. Interesting…
Your biopsies comment frightens me.
Sorry it’s sucked lately. And happy birthdays all round.
@Eden-I’m right there with you.
When the school nurse knows an amino acid is not a drug and therefore won’t give it to Pearlsky,
but the pharmacists think it IS a drug and won’t give it to David.