Sunday, February 24, 2013

So, What Am I Supposed To Do?

It was pointed out to me this morning, by someone I love more than life itself, someone who has been a crutch to me, a financial support in desperate times, a loving advisor, a shoulder to cry on, that perhaps I should focus more on the good things in my life.

And I heard her loud and clear. I mean, I have a home, and it's actually quite a pleasant one, if small. I am able to feed my family. I am richly loved and befriended. I have not died of breast or ovarian cancer, as might have been my lot had I been born even ten years earlier than I was.

Of course, on Friday my van -- which I affectionately refer to as the "scheissbox" -- broke down on the MassPike as I was driving Benjy to a much-needed psychiatry appointment at Mass General, so I may not be QUITE so lucky, all things considered. I mean, that was SCARY. And the last time our family broke down on the MassPike, in 2008, it was 2 years before Ben would ride on any highway again. Even a big road would cause acute panic. (I bet you thought only soldiers got PTSD.) So I did feel pretty sorry for both of us that day. Especially Benjy, whose fear, as usual, waxed ginormous. And he never got his psych session.

On the other hand, yesterday I got to spend two-and-a-half hours at a salon having my hair colored and being treated like someone special -- although most people probably just take things like that for granted.

So yeah, there's some stuff to be thankful for. Also, I do not live in Syria or Afghanistan or a myriad of other places it would be unfortunate for me to live in at the moment.

Wow, I felt awful. I know she did not mean to make me feel so. I know it was meant as a helpful suggestion. All this sadness is toxic, both to me and the people around me. I KNOW THIS.

So I sat on my couch and cried a little and resolved to be a better person and more thankful for what I've got and to talk less about Benjy when I talk to people.

Five minutes ago he woke up walked down the stairs, wrapped in a blanket.

"Hi, Mom," he said, and sat down beside me. I was on Facebook. He looked down at the lower right corner of my screen.

"Two-twenty-four-thirteen" he said. He said it again. And again, as he made his way toward the stairs. I knew what had happened. His laptop sometimes decides to change the date on him. We don't know why, but it screws up his gaming.

When he was halfway up the stairs I said, "Do you know what day it is?"

"Yeah," he replied. "Saturday. No, Sunday."


But of course he lost the date. "So Mom, what's the date again?"


"But what's that? April? June? November?"

I tried to keep my voice from shaking as I answered. "February, Ben. It's February."

"OK Mom. Thanks."

My son is wearing Depends. He is not certain whether the second month of the year is April, June, or November. He barely connects with anyone anymore. He is not the person I used to know.

Why the fuck do I have to be grateful for anything right now? I guess I just have to be aware of how my grief affects others. Because I can see that it does -- and the very last thing I want to do is bring anyone else down with me.

That includes you, Dear Readers. Sorry this blog has become such a bummer! There MIGHT actually be some good news to report soon. So don't jump ship yet!



  1. So this is all IMHO and all that, but...

    I understand why your friend or family member might say something like that, but it's like when we lost a pregnancy and everyone said, "But you can have another kid." No, that's not it, not at all. I'm grieving THIS loss. I will do it on my own timetable, thank you. Some days I might function and get a pedicure (or my hair cut) or go to court. Some days I would stay home and cry.

    You have a son who is turning into someone you don't know, and you don't know why. You don't have to look on the brighter side of anything until you're ready. You get to grieve the here-and-now and the might-have-beens for Benjy as long and as hard as you need to. What's more, your blog is a wonderful resource for parents who might be facing the same situation. For you, it's an outlet. For them, it might be the one thing that lets them stay sane. You never know. Keep writing from the heart.

    1. Oh, Atty -- I am so lucky you are a reader of, and commenter on, this blog! Thank you (as always) for your wisdom and compassion. Your thoughts really, really helped me today. I had no idea (of course) that you lost a pregnancy. That loss is such a sad one. I am sorry. Thank you for sharing that, and how you get what i am going through. xx Anna

      p.s. Am always following along on your posts too (they come to my inbox like little presents I get to unwrap every day or so) but have not often had the wherewithal to comment in recent days. Know I am out there, though.

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  3. When I think about those who have sustained our family through challenges (friends and maybe blog readers?), I maybe irrationally think of traditional marriage vows. All that "in good times and bad" stuff. Only really good friends stick with you through the bad, although everyone will celebrate the good. And, just like half of all marriages, the relationships with friends might not be able to be sustained. Many people jump ship when people they love struggle. Having never done this, I don't understand it. It's some sort of self-perservation, maybe.

    People don't always say the "right" things, sometimes they say the wrong ones, and often by not saying anything they are causing the greatest pain of all.

    Until you live something, you can't really understand. But, I do think your friend was well-intentioned.

    I am thrilled you got out and did something for YOU. On days when A was de-compensating, I was sick, or we were all going through life post-divorce, I used to have to push myself to leave the house (preceded by showering, brushing my hair, looking presentable). Sunshine. A coffee I couldn't always afford from the local coffee joint, a trip to the Fells to just WALK, a lunch date with a friend, walking around the grounds of the DeCordova, or sitting on a bench at our local Pond... I didn't WANT to do any of it, none of it really actively fixed my kid (or me). But, it helped get my mind literally out of the 4 walls of my house and all the stress in them (seeing my child become someone I no longer recognized as he was in 2010, crying, no sobbing). Those walls held those memories. So, literally removing them, or me from them, helped.

    I know good things will happen for you- and your kids. Please don't forget even if we don't say it all the time, we are sending you guys good wishes and praying (to who/what, I don't know sometimes), that things will start looking up. For your sake, because you have to take care of you. You are the only mom those kiddos have and they need you. And, yeah, the two steps forward, one step back dance of autism simply SUCKS. (I realize things may be a heck of a lot more complicated given Benjy's co-morbid diagnoses).

    1. Thanks so much, Laurel -- as always, you get it, and you are there for me. So does/is my beloved "advisor," who has suffered even greater grief and loss than we have -- the worst a parent can -- as well as devastating financial reversal. And I have almost never heard a word of complaint or self-pity or even bitterness from her. She truly is a model of grace and strength and wisdom in the face of adversity -- only I don't think I am quite up to her standards yet. And I do think she gets that, too -- only maybe the other day she just needed to see me suffering less. I hope your optimism for us is well-founded...I do think (hope?) some good things may be on the horizon for Saskia. Anyway, more than ever these days am trying to make it through one day at a time. I know you can appreciate that. Thank you for being there!! xx

  4. I'm still reading and appreciating every one of your posts. I think it's harder to comment when the news isn't good, because what can someone really say except things like "look at the bright side," which doesn't, in my opinion, help much. I guess I'll just say that you have lurkers who read and who care.

    1. Oh, Colleen, I am so glad to hear that. Thank you!! It's such a wonderful thing that these days one can receive warm wishes from across the world -- and so quickly and easily. I want you to know that I am reading your posts as well, also mostly lurking, thinking a lot about what you say (your posts are very thought-provoking, sometimes sad. I DO hope whatever thorny stuff you are sorting out gets sorted out soon -- and beautifully!). Thank you for being out there in the ether, reading about us and caring. Hugs, Anna.

  5. Have not commented before, but had to on this. I have a son with some similar issues and have been through a little of what you have (including one trip to what I think is the very same Unit). I am not a writer or even a blogger, but I can't tell you how much I appreciate you and others that "put it out there" not just for yourselves, but for all of us struggling in similar situations. Sometimes you just need to wallow, and it sounds like you are going through an extremely tough time of late with Benjy. So go ahead and vent all you need to, and we will be here with you. Hope for some good news for you soon.
    Amy B.
    (will try to be less anonymous!)

    1. Amy B. -- thank you so very much for commenting today, and for reading the blog!! I can't tell you how much it meant to me to read your words on this very tough day. *We will be here with you.* Wow, that brings tears to my eyes -- but the good kind. Thank you. That is the wondrous and wonderful thing about this blog; it connects me to all kinds of people out there, and sometimes I don't even know they are out there. How lovely.

      I wonder if we ever met on the Unit, or if our kids did?? Wouldn't that be something? How is your son doing? I hope things are going better for you guys. Be well, and if my blog brings you any sense that you are not walking this path alone then I am happy. Have a great night! xx Anna