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Baseball. Ahhh....the crack of the bat, the dust flying from mitts, the voices in the dugout, "Humbabe...atta kid, get a stick, drive one somewhere, let's go Black Jack, Zach Attack, feet, feet, keep your nose on it, let's go 2-1." There's nothing better.

Here are the Cubs playing for 3rd in the Yakima Tournament. If not for one call, they'd have been playing in the championship game. They lost this one, a squeaker.

Now, as far as prayer...
Okay, I must be doing it all wrong.
I mean, I get that thing about God's will.
Really, I do.
And I do believe it's best for me.
Except that horrid little voice in my head.
It says, "But, wwwwhhhyyyy can't it go MY way, just sometimes?"
And I try.
I really Try. (See the capital T?)
But, as we know, trying and doing are not the same thing.
I struggle a lot.
I'm a self-confessed control-freak.
And yes. In my more irrational moments, I really DO believe I know better than God.
Read that again. Do you see how insane that is? But it's really true. Sometimes I think that if I could only sit down with him and EXPLAIN it, well, He'd HAVE to see it my way, right?
I think it's safe to say I'm no where near that acceptance stage.
In fact, I think I'm going backwards. Was in anger, now jumping back to bargaining.
Little deals with God. Little tests. Looking for signs.
I'm sure God thinks I'm hilarious.
And pathetic.
And blind.
So I sincerely hope that none of you are looking to me to further your spiritual journeys.
Well, other than being able to kind of shrug over at me and say, "Well....I know it's not THAT!"
Glad to be the Goofus example.

Kenny Jo is growing like crazy in so many ways. I don't talk much on here about the challenges he faces every day as he battles his autism. And I don't talk much about the anguish and heartache and exhaustion that comes from raising a child with "special needs." God, I hate, hate that phrase. Makes it sound as if we met those "needs" that it would get better...or that it's like other people have needs, too, these are just a little "special." Bull puckey. It's a disability. Kenny doesn't have special needs. (Well, he does, we all do.) He has a disability. His brain is not wired like other brains. And it can be sheer hell. Why am I talking about this. It's another of those things...people think they know what you mean. They have no clue. And I haven't found words to describe it yet. And all those pithy little poems about being selected for this because you're such a great mom or all the joys of Holland....blech. Nice sentiments, it's true. And some true things in those poems, yes. But your glasses have gotta be pretty, no make that NEON, rosy in order to believe that's all there is.

It's similar to when Dave would mention the short-term memory loss. He would literally be on his way to a meeting and forget to go. Not four or five feet from his destination. Then people would say, "Why'd you miss the meeting?" And Dave would say, "What meeting?" People laugh and say, "Oh, I forget things like that all the time. Ha, ha, ha." And I'd want to scream. Oh? You do? You forget. We all do. But most of us remember having forgotten when someone mentions it. Instead of "What meeting?' we'd be saying, "Oh, crud, I missed the meeting." Can you imagine how scary it would be to have no glimmer? And to know that the erasure of that memory was caused by a beast, growing and throbbing in your head, a beast that will eventually kill you? And that there is probably more and worse to come? That eventually this thing will take not only your memories, but your thoughts, your body, your dreams, your very life? People try to make light of things, but it's not very funny when you think about it that way, is it? Not when every twinge, every headache, every word you can't come up with might be the harbinger of the end. Not when you have to find a way to live under that, to make some sort of peace with it, to give it its due, but not let it take over.

Not very many people really understand. Same with autism. Especially with a kid who's doing well, like Kenny. Our UCLA consultant years ago said, "These kids on the borders often do the worst. They are at the highest risk for depression and suicide. Some kids can eventually function as "typical" kids. Some don't make a lot of progress, but aren't really even aware that they're different. Kids on either end learn to cope better. Kids in the borderland know they are different and are bothered by it, sometimes devastated by it." Makes me wonder about what is the right thing to do. I don't have the answer to that. I can only do the best I can with what I know, and pray it's enough.

Anyway, I vacillate between trying to give people the understanding of what it is we live with and keeping my mouth shut. I tend to choose to celebrate Kenny's successes. His struggles belong to him, and it's not up to me to put them all over the internet. But it leaves people not having a clue about what daily life is like, either. So it's not really fair of me to be all mad at those generic people who say well-meaning things. The well-meaning kinds of things that are actually hurtful.

Well, aren't I just Miss Merry Sunshine today. If you've come for a daily dose of Vitamin D, you're in the wrong place. Today, we're pushing cod liver oil. Heavy and nasty, but probably good for you in small doses.

My quote for today. I always pick one that illustrates what it is I need to learn today.
"It requires less character to discover the faults of others than is does to tolerate them." -- J. Petit Senn

The puppy is growing fast. We love her dearly already. She's sweet and smart and a bit sassy. Duke tries to sit on her with his chest. I think he wants to see if he can hatch her.

Kate and Zach spent the last two days devouring the new Harry Potter book. I had to wait my turn. Had to buy two copies of the book or I might have few surviving children! We heard not a peep from them for the last two days, but last night, after I threatened to steal their light bulbs, Z finally finished, and he and Kate stood on the stairs for an hour.

It was way too late. They needed to sleep, but I could hear their earnest voices talking. The laughter, the "ah-ha!" moments. They had travelled to a place separately, and brought their journeys together. I peeked around the corner. They were standing on the stairs, each on their way to bed, stopping as they passed each other, Zach on the way down, Kate on the way up. Their heads were leaning in together. They were sharing the memory of a magical place, and I believe, creating a magical place of their own. All evening they relished in the fact that they knew what had happened in the Deathly Hallows, and I, muggle that I am, was not in the know. They brandished sly little grins at the dinner table, exchanged little looks and clapped their hands over their mouths lest they say too much. It was priceless. So I watched, at midnight, their heads bowed together, their eyes bright, their voices hushed, soft light shining from their hair. I tip-toed back to bed and let them stay up way too late, reminiscing about Hogwarts.

And if you're wondering if my bed is is...and as you can see, I've got lots of company. Two-face is on the other side, you can't quite see him in this picture. I have at least these three with me every night. Sometimes Macky joins us, too. So, you see, Cathy, that issue about which side of the bed is moot for me. I'm lucky to get a sliver of EITHER side!

And surgery is Thursday. Should be pretty routine. My mom and dad are here. Bob and Mindy are in Washington DC. Bob and Judy are leaving to help their son move. Mom and Dad have to leave on Sunday, so pray please, that I'm well enough to manage what needs to be done by Sunday. Because, if I'm not, I have to do it anyway.

Thanks for listening this far. I know I've been pretty pissy lately. Sorry for that.

You know, there are angels everywhere. A friend of Val's, Patti, who graduated with Dave, has a clarinet that Kate can use! Hooray! Now we'll see if we can get Group Health to help pay for some of the wisdom tooth removal.

Lots of love, and thanks for putting up with me. I'm pretty cranky lately, aren't I? But I'm Pressin' On!


  1. Michelle
    Drop me a email ( put me down for bringing dinner to your family on Sunday. I can make a big pot of spagetti and garlic bread OR cheese enchiladas and rice so that it will last several days and then that will be one thing you don't have to do. Don't apologize for feeling how your feeling because your friends love you no matter what. Please let me do this little thing for you because I want to not because I have to. I will certainly do the praying part you know that. Keeping you close to my heart my friend.

  2. Michelle, think I missed the surgery bit but please let me bring dinner for Monday. It is the least I can do. I will get together with Sue so I don't duplicate.
    I love to read what you write. If it was all roses we would know you were not being upfront with us. Life is not all roses anytime. Please drop me a note.

  3. Chellebelle,

    My goodness. So much to digest here. To think about. Let alone the surgery. Too much. But yes, you are pressing on. Like there is a choice. But I suppose there is, and you choose to press on. More then press on my dear. Your children are flourishing. Such a good mom you are. YOU ARE!! So much on your plate. And don't you love THIS one: "That which doesn't kill us makes us stronger". Oh boy, by now you should be Arnold Schwartneger then. Geez Louise. Love the pics. Love the Harry Potter bit, love it love it. So sweet. LOVE the puppy. And no, I am NOT getting two dogs to fill up my bed, are you KIDDING?? This city mouse??!! Didn't know Zach is a catcher...Drew played that too until he moved to second base, his fave. But he did love catching. He wasn't really big enough for it. And Zach is on the CUBS, way to go!
    Am sending you love dear friend, lots and lots of it. What else can I do? Prayers too of course, and hugs , tons of those. Will be thinking and praying for you tomorrow, all will be well.
    Love u.
    City mouse Cathy

  4. Dear Michelle,

    I have found your blog via the brain temozolomide yahoo group and just wanted to leave you a message.

    So much is and has happened in your life yet you still have such a wonderful outlook on life and it is so nice to see that you feel able to express your thoughts here in your blog.

    My best friends daughter Rose sadly passed away in November 2006, 5 months after she was diagnosed with GBM IV. It's all too hard to understand some days.

    I will be sure to pop back to see how you are getting on.

    Love and {{HUGS}},

    Natalya, UK
    My Blog

  5. Pressing on. That says so much. I think I missed something about the surgery.
    I do understand somewhat about Kenny as I am sure you do about Ben. Yes and to celebrate the positive. Kenny is an incredable human being whom is so fun to be around.I know in the private times it is hard. I know to each we have our own struggles. Ben has just been diagnoised with a enlarged pituitary. We do not know what that means. He will have a follow up next week with another brain MRI. In the reading I have done a tumor can press on the optic nerve which is already a weak spot for Ben. His behavior has been very difficult and not a easy thing to deal with in light of Ron's cancer.
    Etta saw Kaitlynn at the MF pool. Etta broke her arm this summer and has been so good about it. A garbage sack on the arm in order to even get close to the water. Thank God no surgery.
    Grandma Huwe in the hospital- broken hip and dislocated shoulder. Sometimes things just suck but you do press on.
    Love ya.
    Little gal (your new dog)is so cute.
    Hope Kaitlynn enoyed the play. I'm the queen. Only thing that kept me sane this summer.
    Take care,

  6. oh and by the way, I take vitamin D every day for my hyperparathyroid and cod liver oil is a good thing, gives you a good cleaning out. Good for the colon. Ha ha.

  7. Hi,
    Just wanted to let you know that I'm thinking about you today. I hope everything went o.k with your surgery.

    I'm praying you have a speedy recovery.

    from Iowa

  8. Chelle
    Hope today finds you making one more step to recovery . . . what a terrible way to end your summer. Please know I am thinking of you and praying for you.

  9. I've been distracted, and away on vacation, and I'm sorry I missed your post about surgery.

    I'm glad it's behind you now and I pray all goes well. None of us are as young as we used to be.

    We're driving, just me and the boys, listening to Harry Potter on CD. We're almost to the end and it's been an effort for me to avoid all the spoilers that seem to be everywhere.

    It's been a great adventure and I'm sorry to see it coming to an end, however it ends, but listening to it together is always a treat, we pause the CD and discuss all our theories about what comes next.

    Tomorrow we finish.

    What you're writing about, how you vacillate between speaking the unadulterated truth and keeping your mouth shut, sounds like all of us.

    People ask how you are and they really do care, but they don't want to be brought into your world enough to feel the fear you feel, it's just too hard.

    So I'll keep you in our prayers.


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