Tuesday, January 27, 2009


What a busy month this has been. I keep thinking that there will be a time of less busy, less stuff, less questions and more answers. So far, not so much.

I'm back at the School District office early Wednesday morning with Q for further info/meetings with the district Health Officer. I don't even know who this is or why she's important, but we're going and he'll be eating while we have our meeting. I can only assume that the involved process which his feedings are will impress the nice ladies enough that it will add gravitas to my request that he receive services at home for at least November through March. Why? Well, the boy had his first respiratory bug and NEBs at less than two months of age and he's had something like that every winter. Each time, his tone drops and he's unable to participate in therapies so no learning, no progress for a few weeks while he gets back up to snuff. He loses weight so we work hard on packing that back on, and meanwhile he's at further risk of illness because of being underweight. So it's a losing situation all around for him. And this without exposure to the petri dish that a preschool room so often is.

We have a new case worker for the Dept of Developmental Disability. I'm hoping she'll be more forthcoming, easier to contact, etc. I'm pretty durned disappointed that we didn't get the software, touch screen, and flexible "arms" that would hold Q's buttons up by his head (attached to his strollerchair) so he could play his preschool/learning games at home instead of whenever the one computer in the lab that will do this becomes available and we happen to be there for therapy. The paperwork was submitted at least twice and that particular caseworker never contacted Q's OT. Not even a letter of denial. Not even a contact when he aged out of that part of the program. When I spoke with that case worker, she said that their mail system is very slow and that faxes often go AWOL. What? Really?? In this day and age we still can't find our paperwork? Is it a plot? Maybe I could spearhead an effort to put this all online so that no one has any excuse to say it never got where it was supposed to go. In my spare time.

I mean, come on people. My littlest kid sleeps well one or two nights a week. I have four bigger kids who I'm pretty busy with. If I can think of this stuff, isn't there someone whose job this should be who could just make it happen?


So we'll be trying out other funding sources. Meanwhile, the School District thinks they may have a touch screen for loan. Wahoo! I love them already. Big grins. The team of therapists we ended up with happens to be the Aug Comm or Assistive Tech team. These people are the ones most likely to get Q to "speaking", with help. Just for the record, when we get the Box, whatever it is? I want Yoda's voice and syntax. Somehow, it just seems like Q would be that guy, if he had his own voice beyond coos and burbles and crazy-boy belly laughs. (Nodding) That guy, be he would.

In other news...

Court date happens Friday. Prayers are appreciated always. It seems likely that things would be declared final then, she says, puzzled by the whole weird progression (or lack thereof). I'm more or less okay with this, I think.

I mean, I'm not. I'd like a do over, really. One in which, when someone is telling the kids "nothing as silly as a 'disagreement' would ever make mommy and daddy get a divorce", instead of being all deer in the headlights, pregnant-brained, sick as a dog (a surprised to be pregnant dog), and stunned silent as he says this (given the prior announcement of How Things Are Going to Be Now), I reply by standing up, making myself as tall as I could, and stating in clear and calm tones, so that there's no doubt, not even in the distant corners of anyone's mind or heart or soul, not anywhere in the whole universe, that there's no reason mommy and daddy would ever get a divorce, that there's nothing on earth or in heaven that could remove me from being Firmly On His Side or from fighting tooth and nail for the integrity of our family and those little faces' home... That kind of thing. Or getting to say, one more time, how very proud I was to be his wife.

I was. I would have always been. Even with all manner of heck, craziness, uncertainty and this complicated life Q lives... I would always have been.

Since that, uh, isn't one of the options presented? Well. He's very happy. He has whatever it is that he's always wanted, I think. And you know, there's been plenty of sadness over all this. I can't imagine not being sad about this, ever. But the thing is that you sort of have to create joy for and within yourself (and your little ones), or you'll turn to dust. Who wants to be dust? It's all dry, it sticks in people's throats and makes 'em choke. Yuck. You need moisture to make things viable. To have mud in which to grow little bean seeds or robust, stickery rosebushes, one must have wetness.

I'm so far from dust. I might be that red, red clay, ready to be slammed onto the wheel in a studio somewhere. Or maybe porcelain slip, all wet and silky, filling those sensuously shaped molds of undulating vases, or full and sassy fruit bowls, or those sweet little round teacups that like to be held.

Whatever version of mud that it is, that I am (ha), it dwells in the land of possibility. It isn't what it might have been, but it isn't crazy-awful either. Okay, sometimes it's crazy-awful. But there's at least as much to dance about in life as there is to mourn, always has been, even though the things to mourn just keep stacking up. Sometimes the stacks fall on and flatten us pretty thoroughly. But when you're not flattened anymore, when you become ambulatory again, if you can plan part of your dancing-time to be done out in the rain, it helps with one's moisture content. Do try to avoid any actual lightning, though. Electricity + water = no more dancing for you.

Which reminds me: some of us probably feel like lightning rods these days, what with all the layoffs and other not so nice things afoot. Pray a little extra, leave some groceries anonymously for a neighbor, give some extra hugs. Be brave and creative, give something, whatever you've got, whatever it is. If we share and keep sharing, we'll make it. It'll be okay. No, really. It will.

For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. -- Jeremiah 29:11

Though it pours, go dancing. And if it's messier than usual? If it turns out that the red clay of Zion (UT) is running all over you? Well, we can share showers and washing machines too, as well as anything else. Besides, we shouldn't let the fear of a little mess keep us from those moments of priceless hilarity.




annie said...

I think your feathers are more than a little dry already.
meditation/yoga/prayer/quiet/centering are some other helpful accessories!

i enjoyed your post.
don't be shy!

Anonymous said...

I don't get it. Who are you? You posted the same reply months ago. I'm sure you're sincere, but........just looking out for a friend.


annie said...

lol........having some google/ bloggger/ sign in /issues with my computer. sigh.......this old note must have been one of the times i tried to sign in but it kept dumping me out of the system but kept the note. i acutally had typed a new response...maybe that will show up in a year....