Friday, June 27, 2008

Last night

Live creatively, friends. If someone falls into sin, forgivingly restore him, saving your critical comments for yourself. You might be needing forgiveness before the day's out. Stoop down and reach out to those who are oppressed. Share their burdens, and so complete Christ's law. If you think you are too good for that, you are badly deceived. --Galatians 6:1-3, The Message

Last evening's meeting was the last with this particular speaker. It was good. I think it's important to have reminders about how we are to conduct ourselves, you know, as decent human beings, never mind as Christians. The second verse discusses that we must, as the speaker said, "share, care, bear."

It's been nice to sit and listen this week (I may have mentioned that the speakers aren't always great). A fresh perspective is always a good thing, no?

Besides, Q giggled our part of the auditorium into appreciative grins when I was messing with his socks. It's hard to ignore a good belly laugh. And as a result, he made a gazillion more friends. He seems to be collecting them. What a fun collection to have.

So we're off to the family reunion. I'm sure we'll have a grand time. Really we will. I'll try to get some pictures.

Have a lovely summer weekend. Mwaaa.

Thursday, June 26, 2008


Last night a special needs nurse came up to us after the evening's meeting (campmeeting) and complimented me lavishly on my beautiful, well cared for, thoroughly loved boy. Q ate it up, of course. He loves it when people talk about him. Even more when they talk to him.

I sure wish his daddy were around to hear this too. He'd about bust his buttons over this little trooper, just as he always has with the bigger kids.

I also met the friend of one of my aunts. This nice lady knows other, extended family members as well, it would seem, and has already heard Q's story via those connections. She was kind and lovely, having survived the loss, nearly 35 years ago, of her new little Down's syndrome guy to an inability to take in nutrition in any form.

Do you ever look around and wonder who exactly is normal? Are there any "normal" kids? Are there any "normal" families? Wouldn't we all be boring if there were? Or maybe, if we were... Oh, never mind.

More later.

Wednesday, June 25, 2008

Thinks to think

I was walking along with a friend earlier this evening, pushing Q's chair, which happened to be empty at the time. A female voice said from behind, "You don't know how lucky you are, young lady in pink. [me]" I turned and smiled. "Years ago all we had was a tiny rig with wheels this big," she holds up her hands to show a diameter of about three inches. "Just little and flimsy. There wasn't anything like this," and she motions toward Q's stroller chair as she passed us by. "You're lucky." I'd already been grinning, as had my friend, so we both laughed and agreed as she sped on toward her destination.

There was a moment, as she passed and seemed to notice the buckles on the foot plates and the "interesting" head rest and belts, when she appeared to startle just a hair.

As she strode on, I said to my friend, under my breath, "Who's lucky?"


Sometimes I catch someone looking curiously at our nifty transportation contraption and I wonder what they're thinking. I usually smile and they smile back, somewhat self-consciously. The ladies at Costco were kind with Q today, telling him how cute he was, talking to him 'til he giggled and then they giggled, a predictable sequence, but one which never fails to satisfy. When loading his stroller/chair into the back of the van, with consideration for diapers and groceries, I found myself wondering again for the hundredth time what people think when they see us all out and about, kids and equipment, a disabled, sugar-sweet toddler... And the stroller/chair being lifted in and out of the back of the van with a permanent handicapped parking tag hanging from the mirror... Perhaps most people don't notice, really.

At an airport, I was rearranging and packing stuff into the back of a van after a particularly arduous day of travel and Q had begun to fuss when a nearby driver rolled down her window and said, "I've been watching you. God bless you for all you do." I'm pretty sure I blushed, but managed to say thank you. She returned, "No really, this is hard work. God bless you." I got all weepy. It happens more and more the less sleep I get and the kinder people are. Sniff.

I approached the driver of a Dodge Sprinter today. G and I have been eyeing it over the space of a few months now. It parks in the handicapped section at the therapy place and has the coolest rear lift. We've been speculating about how much it would cost, how effective it would be for our family, whether or not we'd like it, or if it gets as good mpg as they claim. I'd personally prefer to place my punkins in a zip drive and transport us all in a glossy ultramarine Porsche, but alas, one mayn't zip and unzip children, as such. Dear me.

Turns out, depending on the condition of the vehicle, the Porsche plan could be less expensive. $62,000 it was, purchased with 6,000 miles on it. It will hold up to two wheelchairs and with the other seats put in, up to eight ambulatory passengers. Apparently, the young lady who is transported in the vehicle by a paid nurse/caregiver had it paid for out of an administered guardianship? Moan. I have much to learn.

We're having a crazy busy week. Campmeeting is on so we're trekking out at least daily for that, plus appointments here there and everywhere. The meetings have been just awesome. (They aren't always.) A really good, really humble guy, talking to the grown-ups about grace and kindness (two of my favorite topics these days) while the littles have lots of singing and stories and crafts. The vision teacher visited yesterday, Speech and two OT appointments today, piano, PT and community health nurses come out tomorrow. (We're squeezing in School: Lite, too.) First thing Thursday, G gets his lower braces on. Then we're off to a family reunion with a fresh recounting of exactly what the Bolsheviks did and how one ancestor's life was spared while all his comrades perished as they fled the coming revolution and the service they'd been so unwillingly pressed into at the behest of Catherine. The kids are big enough to get it and it's being presented by the family anthropologist/historian for the first time in more than twenty-five years. Then there's a birthday and some partying to do. It's going to be a blast and completely exhausting. Yee-haw.

Stay Strong is playing as I type. "We've come too far to lose our way..." Right on.

You're in the moment now
A bitter root
A wandering eye and then
The ties that bind start wearing thin, thin

You're in the moment now
When all you've been blessed with
Is not enough
Here's where the ground gets loose
Here's where the devils call your bluff

Stay strong
You are not lost
Come on and fix your eyes ahead
There's a new dawn to light our day, our day
You've gotta stay strong
You and I run
For the prize that lies ahead
We've come too far to lose our way, our way

We've seen the tragic flaws
The tortured souls
The saints with feet of clay
Here's where sin becomes cliche'

We've come through wilderness and watched
The cloud by day
The burning sky into dawn
Have you forgotten who you are?
Did you forget whose trip you're on?

Stay strong
You are not lost
Come on and fix your eyes ahead
There's a new dawn to light our day, our day
We've gotta stay strong
You and I run
For the prize that lies ahead
We've come too far to lose our way, our way

Get up, there's further to go
Get up, there's more to be done
Get up, this witness is sure
Get up, this race can be won
This race can be won

We've gotta stay strong
You are not lost
Come on and fix your eyes ahead
Our Father's dawn will light our day, our day
Come on and stay strong
His grip is sure
And His patience still endures
There'll be no letting go today, no way

Come on, and stay strong
You and I run
For the prize that lies ahead
We've come too far to lose our way, our way

Yeah, baby. Yeah.

Q's out before 2:30am for the first time in recent (functional) memory, so I'm heading off too.

Give your honey extra spoons and snuggles, have a nice cup of something warm (or cold) and revel in the moments you have with your beloveds as you watch your punkins grow too fast.


Monday, June 23, 2008


I've been trying to tidy the living room, but I'm about ready to give up. Sigh. The emotional enormity of the "stuff" from storage is getting to me, I'll admit it. So making myself attend to those boxes has gotten a little difficult. In the morning (Monday), Q is having a consult appointment here with the nice vision therapy lady, so the jig is up. It no longer matters if I want to make myself deal with it, it simply must be done.

We spent most of the day planting flowers. They are luv-er-ly. Have you ever heard of a flowering maple? It looks like a cross between soft pink hibiscus (flowers) and maple (leaves). There's liatris for it's showy purple stalks, sea pinks, carnations, million bells, wallflower (my goodness, it smells sweeeeet), dahlias, kong coleus, petunias, glads, apple blossom snapdragons, and a bunch of others I can't remember. My favorite spot though, is where S and my mom dug out blackberries and they decided that if the "sticker bushes" were to stay away, they'd need something to take up the space. So we put in astilbe, white bleeding heart, and New Guinea impatiens in pinks and white to match.

Did you know that my wedding ring is a rose ring? Yeah. He picked it because I'm "such a flower person." It's gorgeous. I can't tell you how many compliments I received on it over the years.

So we dug in the dirt. A lot. The spirea that my mom and I planted in honor of my nuptials is still going strong. It's getting ready to bloom it's cloud of pink.

I guess I'm trailing off in bemusement.

Back to the boxes, then. It's nice to have things orderly, isn't it? Though honestly, have you seen Madame Blueberry? You know, Veggie Tales? Stuff Mart? I've gotten pretty good at culling (even though there are certain items of yore that I hate to see go), but if we end up with one more piece of equipment for Q, the tree is gonna bend and dump all our stuff from our tree house into the lake.

Good thing I'm sorting and dumping, because there's no end in sight for this equipment thing.

I'd far rather be in bed. Maybe I'll go now and get up early.....


Saturday, June 21, 2008


My friends who've made the brave decision to stand and fight for their family are attending a Dr. John Gottman seminar this weekend. If you're so inclined, I know they would deeply appreciate your supportive thoughts and prayers.

And now, because the boy is finally out, I'm going to make a mad and silent dash for bed. And hey, look at that, it's not even 2 a.m. yet. A whole hour and a half earlier than last night. Cause for celebration, that.

More later. G'night.


Friday, June 20, 2008


Not to sound too whiny or anything, but...

It's past one in the morning and the kid won't sleep. He's propped up in his little armchair, watching something ridiculous on TV. I want him to sleep. Right now. He's had all his meds, clean diaper, lovely fresh "I love bugs" jammies, we nursed 'til I'm just done, thank you, he had Gas-X in case we (in the royal sense) were having any issues of that type, and still he's awake.


Where's the little manual that came with him? You know, tied onto his toe, a wee booklet entitled: The Proper Care and Feeding of Q. Oh, right. Didn't get one of those. Hmmm. (fingers tapping)

Any suggestions? I should really get one of those hammock swings to install in the doorway. I could wrap him snuggly, plop him in and curl up under him so that on the off chance that he could wriggle out of the netting, he'd fall on me and I'd cushion him. And I could catch a few minutes of sweet unconsciousness.

I'm not really making much sense, am I? My fingers are stuttering a little. I want to go eat sharp cheddar and lovely, little, alliterative, lemony cornichons. Wait. No, I don't. I want to sleeeeep.

Ah, hear the wailing? Oh, please. He's fine. Enjoying his programme. I, however, am whimpering a little.

Sunday, June 15, 2008

Happy dance

They're baaaack.


Tuesday, June 03, 2008

Pics and etc.

Easter, lilies.

A couple of days later.

The engineering genes are coming out (G). . .

And again (E). . .

And again (K). Note that S isn't digging. She did some, but spent most of the time running around, just like she did when she hit the sand for the first time at about 15 months old -- the little squirt chased a soccer ball, barefoot, kicking it around for most of an hour, attentively tailed by a doting daddy. Is the digging in the sand thing universal to all punkinheads? I did it when I was a kid. Shoot, I'd still be doing it if I weren't now the, you know, spotter of jellyfish, pusher/hauler of Q, wiper of sandy mouths, the resident managing Jill of all trades (not that I'd trade the mama gig, believe me). I loved to watch the kids on the beach with their daddy, digging like mad or cavorting in the waves. I'd inevitably fall asleep on the soft part of the beach while they played. 'Twas lovely to sit and just be. There's a unique belly-dwelling, up-welling, wave of satisfaction from watching one's beloved and babies, no? Maybe it's as deeply seated as digging in the sand.


We're back in court tomorrow. Your thoughts and prayers are appreciated, as always.

Good visuals

At the beach, I said: Q -- how do you like the big waves and water? (Big smiles)

And then, "Q -- how do you like the big wind?" Scowley face. Me too.

S writes the boy's name. She did write the whole thing, but this shot seemed to fit here.

And speaking of good visuals, head on over to better than normal and watch Daniel's picture and clips. Then cheer a little for the now famous boy (and his very articulate mama). When you get to the post with pics of his wish trip you can see his versions of the very happy/oh so scowley faces, much like Q's above.

Are these two guys not the cutest boys ever? (Just say yes.)

Sunday, June 01, 2008


Check this out. It's been awhile since I searched, but this seems new.


So take a new grip with your tired hands and strengthen your weak knees.
Mark out a straight path for your feet so that those who are weak and lame will not fall but
become strong.

Hebrews 12:12 & 13
New living Translation