Inspiration

I found this lovely place through the NieNie Dialogues. Have you met Stephanie? I found her blog for the first time several months ago. Her story has stayed with me between readings. She is one of my heroes. I am grateful that she is willing to share a peek into her incredible journey, taken and made with stunning grace.

We've been so productive in life lately, forging ahead through schoolwork, miscellany, quotidien things. It's been mostly a joy, excepting the moments in which one of us runs out of internal resources. Even then, though, the coming back, apologies, making nice, cuddling each other up, these things are exquisitely precious.

Sometimes I forget that it is work and work and unending work that lands us here, in a place where we can revel in our accomplishments. All talking, explaining, rule making and enforcing, hugs and laughter and skinned knees contribute to what and who we are now, this little group. Today we had an English test, many other English lessons, writing, math, spelling, a trip to the doctor and three trips to the pharmacy for medicine to make the allergic reaction stop. This is not a small thing, a day like today. It is a huge and lovely thing, beautiful unto itself. It includes things like hot chocolate while we fold clothes, a dishwasher filled and emptied and filled again, vegetables, three good alternative meals for Q, grapes to take with us on the fly, and big drinks of good, clear water. Each of these things is a small miracle, you know. And each contributes to the larger accomplishment that is the magnificent day, closing with the oohs and ahs which a blue and gold and rose and platinum sunset demands.

I am always caught, just a little surprised that things go on as they do. I feel still the rip in my little corner of the universe, though delight at my small crowd sometimes blurs the edges of the hole. S popped in this morning, couldn't wait 'til I was out of the shower to tell me: "I think Q's smile is just getting bigger and bigger. Yup." And she was off again, jumping back into my bed to snuggle up her punkin brother and make him giggle some more. In so many ways, I am one of the very best-blessed mamas in the universe.

Anyway. See if you can't find a little bliss right where you are this day. Thank you, Stephanie, for sharing some of yours and for keeping it real.

A restorative

Oh, just the perfect thing when one wants a nice tub, but one hasn't got one.

(Thank you, Pam.)

Quote

She deserved better, but she resolved to do better instead.

--Stuart McLean, The Vinyl Cafe

In a nutshell

This week has entailed much busy-ness, the kids knee-deep in schoolwork, and my inability to sleep without seeing "Direct Object, Indirect Object, Objective Complement, Object Complement" in definitions, sentence labeling, and diagraming on the backs of my eyelids. Heh. I'm looking forward to church in the morning, so I'd best scoot off to bed before it's time to get up again. Q's snuffling and complaining, so I'm off.

Good news! It's not Al Qaeda.

Well, it didn't really get "better." The missing math was found (in a place I'd already looked thrice, I tell you) and done, without too much fuss. So that was nice. As was the hour of online math tutoring the eldest two had. Oh -- and the A that E got on her English test. All nice things.

At some point I started growing a headache and went looking for caffeine. That effort ended when I lost my grip on a Frappucino bottle that was already travelling at a not inconsequential rate of speed toward asphalt. I cleaned that shattered mess off the driveway, and my running shoes are now dripping dry in the tub. They hadn't been pristine before, since I had only just finished wearing someone's abandoned tepid cocoa -- at least that cup hadn't broken. Instead of coffee I ended up with four cups of pear white tea. Lovely, to be sure, but not the same. The instant coffee was found between bags of tortilla chips. Yes it was. It's been rescued and returned to it's pharmaceutical locale.

The disposal has been indisposed all day, leaving the sink a foul, undraining mess (the needed tool seems to have gone into witness protection). At suppertime, Q kicked over two mugs (two!) and busted them to smithereens. He was dismissed to the tub, which is probably what he wanted anyway. I have run two more loads of laundry, planned lessons in greater detail for the next couple of weeks, served up a squash/quinoa/butter/brown sugar/cardamom concoction for supper and medicated those needing it for bedtime.

The water bottles and snacks for tomorrow's Therapy and Van Maintenance Tour are set out. The breakfast cookies are cooling and the veggie sausage patties waiting patiently in the freezer. There are juice boxes and diapers and wipes in the van, which has been emptied of all extraneous materials following our trek east for a memorial service yesterday.

There were less complaints and more productivity today from certain pupils here. It might have had something to do with all the broken glass and the look of dead calm/frozen disbelief on my face, but I'm hoping it has more to do with my unwavering fortitude in the face of: "Whyyyyy?"

The late afternoon was salvaged with repeat playing of Larger than Life and You Get What You Give (we decided that they're definitely kicking, erm, donkeys, therein). Inspirational music, for some of us anyway. U2's Beautiful Day helped most. The children are mostly down now, only Q is still giggle-shrieking. My dad discovered the whereabouts of the singular "magical" tool and the sink is draining again.

G has now reappeared to finish his writing assignment. Crazy boy.

So the long and the short of it is that I'm going to resist the urge to draw parallels between my day and terrorist plots and instead revel in the sounds of very much more quiet than there's been all day. Q needs a little water before he sleeps. I'm contemplating finding something to watch online. Mayhap a thing with no redeeming qualities, save humor.

And one more thing, before I go back to the laundry. Several years ago I was listening to someone talk about their life circumstances and came away with a fantastic quote: If you've got problems that money will fix, you don't have problems.

Kiss those babies and the one you made 'em with. It's a Beautiful Day. Don't let it get away.

Please explain

Someone who shall remain nameless seems to have lost one of the Very Expensive Math program discs. Seriously. (head in hands) I am hoping that it didn't land in the mud near a rest stop a couple of hours away.

So far today I have done four loads of laundry, guided lessons for cranky persons, hauled one in for a filling replacement, supervised the making of a vegetable/hot dog "soup" (you do not want to know) and cut myself cleaning up a broken glass full of water which Q kicked over. And! AND!!! The Costco-sized container of instant coffee is AWOL. Seriously! Where in the world would it go? (We do understand that my overuse of italics just there is indicative of the approximate level of frustration, yes? Oh good.)

Time to toss the house.

Misc.

I am always puzzled when I see people tailgating or cutting off tanker trucks with pictures of flames on their haz-mat tags. I wonder if the drivers of those smaller vehicles are jockeying for some cosmic, all-time version of the Darwin award.

I'm feeling especially grateful just now for opportunities afforded my children, for extended family to share some of those experiences with, and for clean spaces. I have a penchant for appropriate tools for various jobs: the Odyssey I drive my children in has rubber floor mats. They wash off so slickly, as do the seats. I adore microfiber cleaning cloths. I have a printer/fax that makes my life easier by several orders of magnitude, most days anyway. What a gift to be able to just make and have the materials I need for the punkins to proceed. There's a really lovely broom in the kitchen -- I use it often and so can speak to it's usefulness. Very cool broom. The dishwasher and washer/dryer. I cannot fathom doing four loads of dishes by hand in a day. I cannot fathom trying to keep up with a laundry "schedule" that is most successful at three to six loads per day without a fantastic set of machines. They get the dishes and the clothes clean, respectively. Clean. I love clean. I consider these things to be small miracles and I am greatful beyond explanation for each of them.

Wish list: Dancing on the beach -- rain or shine. Hours all in a row for reading. Respite care. More silly time with the kids (in which I may thoroughly embarrass them). More hours per day, with one extra day per week. Fireside snuggling. Self-dusting furniture. A cloning device so I may be therapist, mom, teacher, chaffeur, cook, researcher, lifeguard, runner, advocate, thinker, whip-cracker, and still be able to dance on the beach.

Spoke with the PT today about Ski for All -- he gives it an adamant no. His adult son volunteers with the program every year for several years now and our PT has great appreciation and respect for it, but Q lacks the physical stamina for the cold (though we've plans to work on that), and is not a good risk for downhill motion beyond being snuggled as he slides at the park. Last year, our beloved PT nixed the tubing hills, even the gentle ones, because Q cannot protect himself in any way, not even the reflexive motions that babies make. He'd run a significant risk of head injury because he simply cannot maintain a steady head position. However, said PT does state that Q may indeed look forward to participating in downhill runs with Ski for All sometime in the future. He will love it and not want to leave, which means that he'll need his mama to get busy raising the dough for the program, thanks.

In the meantime, I'm looking at the WIKE special needs bike trailer. Check it out. The videos are especially neat, I think.

Q's out and snuffly so I'm heading off quick because I'm betting that I'll be up again. My bedtime reads have recently included P.G. Wodehouse. I'd forgotten how great it is.

And so I'll leave you with this, from a sweet friend of a lovely friend. Have a richly restful weekend.

"The Lord has said to me in the strongest terms: 'Do not think like everyone else does. Do not be afraid that some plan conceived behind closed doors will be the end of you. Do not fear anything except the Lord Almighty. He alone is the Holy One. If you fear Him, you need fear nothing else."... Isa 8:11-13 NLT

Nicely done

Read and obey.

Tired and, uh, goofy

If I can just keep all the balls in the air a few more days, we'll have the weekend. We've barely been home for the last several days -- field trips, therapies, family fun. Tomorrow we have music lessons for the big kids, and Q has his second day of preschool. His teacher has the sniffles, so she's not going to come in, but the school SLP will be there and we're excited -- besides being super nice, she's also one of the AAC specialists who make up the team.

Today in regular Speech therapy we learned that it will most likely be January before the swallow study is approved, so that slides to the back burner. Less to worry about, schedule-wise, though I'm so frustrated with this process that I could kick something. His next neuro appointment will coincide with that so we discussed lining up meds with function and how we would need to repeat oral testing as his function changes if he's on Baclofen.

Some things make me want to run into a cave, post a rock across the door, and hide in a nice, warm nest for a very long time. Here's my current list: thinking about possible eye surgery for Q; health issues with another kid o' mine; paperwork; daily to do lists; laundry; cooking; cleaning; juggling equipment needs with the realities of what might get paid for and what would really facilitate a little fun for the lot of us; diapers; snot; driving the crowd around for the rest of the week; keeping the various personalities happy; the parking ticket I got while we were in church...

It's not a short list. I want some real sleep, a massage, a healed-up knee, a walk/run -- intervals sound delightful, another massage, real food, a nap, a lovely bath, maybe a pedicure, some cold sparkling water, and then I'll be all set.

This is what I'll do instead: push-ups and squats tonight, then tomorrow piano, preschool, violin, school in between, then fly home and clean for visitors. Thursday we have nothing on the calendar but school and music practice, plus the usual chore type things. Friday there's two hours of therapies, then orthodontist appointments, then home again for more school and cleaning. Saturday has church, choir, potluck, then a birthday party/family reunion evening. I feel sure that something must be on the calendar for Sunday, but no. Monday has a dental appointment in the morning, then nothing but school and cookies. Okay, cookies aren't on the calendar, but they might be by the time I head to bed tonight.

In short, life is often a whirlwind of activity. I find myself cranky with it all when I've failed to properly immerse myself in it. So I'm off to do that. You, my friends, must stay here and write me algorithms for medical decision making processes. Or put up a pie chart. Or graph. Seriously, parts of this are weighing on me and I need some new way(s) of viewing it all, lest I go hide in a cave.

I'm off, boy's out. I'll do some quick strengthening stuff, being mindful of the knee, then lock myself down 'til morning. Sounds lovely, yes? Well, it is. You should see the giant boulder I'm planning to roll across the cave doorway -- quite impressive, mostly made of cheese with some quartz mixed in. Hmmm. Monty Python's suddenly rolling through my head. Wonder what that's about.

Must. sleep. now.

XO.

Do something

I've been involved with a charity for a year or two now, one that came about partly because of how things unfolded right around the time Q was born. It's not an easy thing to be caring for a special needs newborn, much less his four older siblings, and alone at that. As time has gone on I've been more able to pull everything together, though it still ebbs and flows. I used to get either my teeth or hair brushed, but never both within spitting distance of each other. Get it? Spitting distance? Yeah...

Anyhoo. As time has gone on, Q has not progressed through purees that most babies start out with. He has not gone on to picking up little cubes of cooked veggies. He doesn't make it through a meal without just about guaranteeing that I wear some of his delectable smooth foods. Blueberries don't do good things for a person's fashion aspirations. Because of a variety of other issues, there's also a constant risk of some sort of spitting up -- it's rare to go more than a few days without Q losing some food item that we worked to get into him. Often, that too means that my clothes take a hit.

Enter the dear friend who started Out of the Gray, a charity set up to help caregivers get some of their own needs met, mostly in the clothing department. Before she filed her 501(c)(3) paperwork, before she'd even thought to consider her amazing talent for finding brand new gorgeous clothes in unlikely-ish places to be something she could offer to other people -- women who are somewhat overwhelmed by the demands placed on them.

When times are tough, mamas scramble even harder for their babies, even when those babies are full grown. Women work themselves nearly to death every single day caring for a mom or dad, as that person they knew as parent is being slowly stolen away by a degrading brain. And these are just the typical examples. How about a sister caring for her child-like younger sibling because there's no one left to take on the job? I bet if you think back you'll remember watching moments of pure grace unfold when someone stopped to care so tenderly for a child in a wheelchair, or to scoop up a five year old whose knees are giving out as she learns to walk. If you've looked especially carefully you might have witnessed kisses bestowed on a laughing punkin whose delight may never come in words. There are a million different ways to love our families, many of them honoring courage that defies naming. So. Here's the news: she's helped out three women now, and has more names on a list. That paperwork is in the official government pipeline. A fundraiser is planned for February. And she has a Paypal button. Here's the link: Style with Purpose.

In review

What a week.

Last weekend was our church retreat. It was fantastic to spend some time in renewal, especially next to the ocean. I really can't say enough about it -- good food, great setting, fantastic conversations, kids coloring and taping and gluing and loving it. It was a special time, spent getting to know some really lovely people a little better. I'm especially grateful to our pastor, who took off after a group of kids who fancy themselves as young mountain goats and had sprinted ahead of the hiking group. He caught up to them to stridently warn them back from the edges overhanging the whirlpools and point them back toward the rest of us. Small shudder there, but all's well that ends well. Yes? Yes. (We just won't speak too much about my hike, which was with a dad and his son, all the way up to the bridge -- is it 400' above the point we spotted the runaway group on? We guessed wrong at the fork in the trail. Hooray for quads and glutes, baby.)

Monday was a relatively quiet day. Q's chair needed picking up, since he had extended himself fully out and broken off the very strong footrest, right at the screws. We'd had a loaner for the weekend from the pharmacy/supply place while they reinforced a new footrest and replaced all manner of other stuff for the boy. So we did some school, then packed up our stuff to go to the dentist (no cavities for all four big kids, hurray) and take off for the pharmacy. Looked at furniture with my mom at a going out of business sale, then made a quick stop at Trader Joe's for part of the week's provisions before heading home to make supper.

Tuesday we had the usual therapies and school, Q's chair got a substantial tweak from the equipment modification expert at the therapy unit, and I took a friend and picked up a table and it's chairs from a Craig's List ad. I was going to offer them less than they were asking for it, but he's Navy, and well, I couldn't do it. Besides, the set is in good shape and he packed it up so nicely. It's a perfect size to spread out at for certain children who are doing ever bigger projects and research and needing a thousand books plus computer access, simultaneously. And it has a leaf. I'm very pleased to have found it for such a good price.

Besides piano and violin lessons and schooling done in between, Wednesday was Q's first day of school. Can you believe it? Kiersten shot a couple of pictures, so I'll have to see if I can share some here. The preschool teacher is a dream, really. Q loves her already and thinks he might be fine if I were to just leave him there and bring in some food sometimes. I mean, there's a PT (love her -- the one who added that he's a bright and delightful boy in the last meeting with the school district), the nice teacher lady sings and claps with him, there are instruments to shake with the music, he gets to color with markers. Who wouldn't want to move right in? Next week, the SLP will be in and the PT will be dropping off a couple of seating arrangements to try with him, including something that looks like an oversized Bumbo seat. A trip to Target for clearance shirts for me, clearance blankets for some of the kids, and generally everything but the shampoo that I needed, and we were off to home for leftovers for dinner.

Thursday was Q's neuro appointment. The big kids stayed home with a friend, cleaned up and did chores and schoolwork, while Q went off to wow the neuro guy. It's always fun to watch, how the neurologist grins back at the boy when his infectious smile spreads across the little chubby-ish cheeks. The bottom line for this appointment: the neurologist is happy to see him making progress, glad that he has services in a classroom, is continuing to learn at home as well, and is having several visits a week at the therapy unit. Glycopyrrinate and Baclofen were discussed, for drooling and tone/spasticity respectively. The former can cause constipation while the latter can cause sleepiness. I'm not seeing either as being an absolute benefit at this precise moment, but when Q returns in January, it will probably be to discuss how we'll proceed with those meds. If he has a drop in tone with the Baclofen, I'm considering pushing immediately for a lumbar test dose and then, if that looks good, on to the intrathecal pump. I do want to know, as Q's OT raised today, how high up various local docs are willing to place it. There's some concern about cranial nerve/cardiac affect, if it's placed too high, but too low, and the fine motor changes that we'd be really hoping for don't show up at all. Plus, there's gravity to consider too -- the meds would flow down from wherever it's placed... So, more questions than answers at this point, and I have that thought of eye surgery flitting around in the back of my head. I'm wishing I could defer to someone else for some of this, or at least bounce it off someone.

And today -- two more therapy appointments, plus general clean-up and some school, lots of reading. I let the kids be a little bit lazy today (read: watch tv during the day) because I was so tired. I've scheduled them so they can have a little of that, and we needed it today. Plus, the general cleaning up part of the day has brought on new projects and enlightened us as to other things that need our attention. And we'll be having a very busy weekend, lots of family in town. And next week looks fairly tightly booked as well. Lots to do and see. Pray with me that on Monday I will be not any kid of sick, and certainly not the kind that involves water and waves. I've never been really sick on a boat before, even when I was pregnant and we were in a storm with twelve foot swells I was just queasy, but the time before last when we were all out it was horrific. This time that's not an option. It will be just me filling the position of parent/grown-up and my charges are in it for actual education. So, yeah. If you have any helpful tips, please share. I'm taking anything from meds to meditation. I'll take suggestions for the children as well, since they may or may not be just fine. It's hard to tell.

Hope you are looking forward to a peaceful and renewing weekend with your beloveds, carving out some time for true communion, a space in which to deeply rest and become you, only calmer, happier, more thankful, loving and kind. Take good care, and have a good sleep.