Goodbye, February

And none too soon! 

Oh, hello.  It's been a few months, I guess.  Crazy times here - trying to hold All the Things together in reasonable form and to a reasonable standard of function.  Sometimes these efforts are more fruitful, sometimes less.

Q's been sick.  After a day of vomiting (post nasal, etc.) and several days of being reluctant to swallow anything that wasn't precisely as viscous as water, we went to ER for IV fluids and breathing treatments.  Poor guy was just becoming more lethargic, even with tea and honey, even with the coaxing of sisters who got him to swallow the formula supplement.  The loss of sleep over the last week or so has been a bit staggering, perhaps literally.  One should not have to choose between being able to stand up and being able to think through dosing and feeding schedules.  He's better, but still with the gaggy mucus crud that requires saline and suction and albuterol unless we're okay with more vomiting.  This makes me wonder if the bug wasn't RSV.  Ew.

To complicate matters, we're down in Medicaid Personal Care hours, which seems ludicrous, but hey, whatever.  At this point, the state's algorithm says that Q requires 97 additional hours of care per month beyond what a typical child his age would require.  So I'm not sure how to put this, but what. the. heck!?  That's used up on meals and meal prep alone, never mind anything else.  I asked for a re-evaluation, and we're waiting now to hear if the request for more hours has been approved.  The not cool EEG results (positive for epileptiform activity - January) may help Q to have more hours.  For this I have a response that you might expect - rather mixed emotions, and kinda frustrated out of my mind that this is what it takes, when the standard baseline number of hours used to be 200 per month.  Since this illness, we're back to needing the nebulizer, at least for the foreseeable future, so hey!  Another item to pop into the formula!  (insert indeterminate cursing)

Somehow, amidst all this (waves arms) the girls continue to trundle along, scoring well on assignments and tests, working their little tails off for their opportunities.  They're saving to buy violins, pay accompanist fees for violin recitals, and working off parts of piano and violin lessons, as well as the summer violin camp.  I'd wish for a little less work and a little more play for them, except that it seems to be serving them well.  Sometimes organic lessons in humility can be tough to come by, but not so much these days (she says, ruefully). 

I suppose most of what we're doing these days is figuring out how to make do with very, very little, plus the occasional sweet kindness of friends and even (seemingly) random strangers (entertaining angels unawares?).  I don't know how this works, except that so far, miracles of every size and shape keep popping up, just in the barest nick of time.  (Whispering.....  To be perfectly honest, it's wearing on me a bit.  Or it could be the crazy stupid pathogen and lack of sleep...)

So that's enough of that. 

I popped in here to write a quick update, and found that my playlist is loading again for the first time in I don't know how long.  The music is playing now as I type, and making me smile.  I have no idea what I was thinking for some of these songs, but the eclectic selection has me grinning.  The heart is abloom...  See the bird with a leaf in her mouth...  It's a beautiful day, don't let it get away...  What you don't have, you don't need it now...

One wildly unrelated note...  This week several teens and preteens around the country have performed really cool acts of sacrifice and service within their families.  Whether for parents, siblings, grandparents, or other miscellaneous relatives, each of these kids has put him or herself out when all other options were exhausted.  These kids have lent succor to those exhausted caregivers, good people just trying to hold the family together and keep everyone alive, pain-free, okay enough to heal...    People, we have some really fantastic young folks about us.  Notice some of them and say so, eh?  The tasks they've taken on over the last week or so are more than many reasonably well-functioning adults can manage under the best of circumstances, and these kids have been glad to help where they can, only wishing they could do more.  May they be blessed in their endeavors.  May you be blessed for knowing them.

We've got church in the morning, busy afternoon activities, and a full Sunday after that.  Here's hoping we, et tu, successfully carve out some really quiet, really calm, really, truly restorative time over the next 36-48 hours, and in the middle of it, do take kind care of someone who means the world to you - gentleness is such a revel-worthy thing.

XO.

Hiding

Yes, I am here because I should be doing something else.  I'm taking a few minutes off from being a grown-up. I'd like to be cocooning somewhere, welcoming in fall while wrapped in a blanket in front of a fireplace and reading, or something.  Whine.

Q's had some trouble sleeping over the last couple of weeks.  I'm hoping it was the virus he seems to be over now.  I do not do middle of the night on call mommy like I once did.  I may be slightly past my peak in that regard.  Whine.

Perhaps what I really need to do is three good things.  Yes.  If I were a grown-up, which I will not be for another three minutes, that is what I would do.  (She sits, still, waiting for the time to elapse...)

Okay. 

First, some amazing contacts have been made lately.  County and state developmental disability people are just incredible.  Good things are afoot and miracles abound. 

Second, school is going pretty well for all concerned.  Some of us have some speed to pick up, some of us have some organizing to do (spreadsheets are a girl's best friend), but overall, wow.  Q loves Preschool.  S loves her new math book.  K loves the opportunity to be silly with her English.  E loves thinking about never having to do schoolwork ever again.  And G loves that one day he won't have to discuss Latin or Algebra or writing with me ever again.  And I'm a little bit floored at how quickly those days are approaching.  Yikes!

Third, time with the kids.  We've been running together, averaging three times a week, using the Couch to 5K layout.  The app for the iTouch is pretty cool - K and I have made playlists for the runs and the C25K app shuffles the songs for us and then rings bells at us and hollers "WALK" or "RUN" when it's time to switch out the interval.  It is an experience that sort of knocks me over, running with them.  We start out all together, so we can hear the music in the cheap little clip-on speakers that hang from the back of Q's chair.  We can't make it too very loud, or Q will go deaf and people who pass by us will get snippy, but too soft and no one can hear the bells and voice or the music, both of which we've all decided we have to have or we just won't make it.  As we warm up and then run, we spread out a bit.  G's legs are so incredibly long, he can outlope us all and make us look just silly.  S's legs are so short, comparatively, but she runs hard and often passes some or all of the rest of us.  And whomever is pushing Q has harder work to do - usually me - and mostly ends up in the middle, trying not to lose sight of anyone.  We begin in a clump, cheery and full of extra wind, so that anyone more than a few steps away will be brightly hollered at when it's time to run:  "We're running!"  By the second round it's, "Running,"  and by the third a flat, "Run."  This cracks me up every single time, though I'm not laughing because I'm too busy gasping, "Cool down!"  So when we're out there, and I'm watching them moseying around a track or down a trail, I think about how blessed I am to be there with them, watching them do this cool thing, and participating in their growing up.  It's so big that it's almost too much, like accidentally getting an eyeful of the sun itself.  It makes the runs feel short indeed.

I'm heading to bed because I can.  :o)  Hope you're getting good rest and plenty of renewal.

P.S. We helped some friends last week who had flooding in their house.  I still don't have words to express how horrifying it is to see a home so terribly disrupted.  And I cannot imagine having to be the people in charge of whipping various subcontractors and insurance issues into shape so they will all produce what has to be a livable space once again.  It's heartrending and completely overwhelming. They could use your prayers, and probably some dinner if you're in the area.

Well

Look at that.  I missed posting the whole month of July.  In fact, it's been two months.  I don't know what to say about that.  Sometimes I look around and realized that two weeks have gone by and I'm not sure how we've all managed to stay upright and in motion and all, and then I remember to check the laundry.  And yes, there's evidence that in fact we have been buzzing around like that.  Heh.  E's been in charge of that department lately and doing a pretty good job of it too.  More likely, at least when school is in full swing, I remember how busy we've been when I note that the grading has begun to pile up.  Good times.

Onward.  We've had a fun summer.  Spent some time on a lovely little island with lovely friends, then hauled off to a family reunion and enjoyed swimming with cousins, and the bigger four spent time with their dad.  Q made his television debut (SO cool), and concerts - including all the kids getting to see HMS Pinafore.  Q loved that too - he stood at the edge of the balcony overlooking the orchestra pit and tried to help out with percussion.  Then we had the best ever not-exactly-VBS week doing art, science, and food projects.  That visiting kids asked if they could come again on Monday for more (there wasn't more), was the surest sign of success.  I'll post the amazing pictures if I'm allowed to (copyright, privacy, etc.).  We're considering writing a curriculum or outline for what we did and selling it.  It was awesome.  And the people were great too - it was a huge bonding experience for the church with nearly a 1:1 adult (volunteer) to kid ratio.  So cool.

Following that fun week, we slept some and then headed out for some family time with auntie and uncle.  That was so cool - we rode horses (ow and hooray - it's been a long time since I learned to jump little logs and fences), saw a fly-in/out of smaller planes (including one restored by boyhood friends of my dad), and spent an afternoon out on a pontoon boat and swimming in lap-pool temperature water.  Chilly!  So Q did not go in, but he loved the wind and sun (but no pink on him, not even tiny freckles) and the boat flag.  He absolutely howled when he had to leave it on the boat - he loves to have those opportunities to be in charge.  Funny guy.

So what's next?

On more general topics, I'm asking for continued prayers regarding the house situation.  Not much to tell right now.  I spent part of today trying to nail down details.  I'll know more later in the month.

Regarding the kids, we're getting ready to start the school year with stacks of fresh workbooks and empty journals and lovely books like "A Rulebook for Arguments."  It's a little bit like climbing on a rollercoaster.  I have one offspring who is looking into a driver's permit (that thud you heard was me fainting), another who wishes to rearrange the planet to make it function better, one who worked her tail off this summer to earn money for something she wanted, and another who is trying desperately to follow in her sister's footsteps and earn her own fun stuff too.

Which brings us to Q.  I'm not sure exactly how his school year is going to work out.  If he were a slightly less complicated kid, I'd have no problem putting him on the little preschool bus and getting him back again a few hours later.  But he's not that kid.  He has to have good positioning in any chair configuration lest his clothing bunch up and begin to threaten the integrity of his skin.  A looser set-up often results in him slumping over and throwing up because his torso sort of collapses without good support (though this is happening less and less frequently).  He doesn't protect his own head like another child his age might, so I'm not sure about sticking him on a bus in his nifty Bingo chair - not enough head support, I think.  Add to that this:  the school district is looking to have PT and OT occur in the classroom, with the other kids, because they want him to be receiving services in the "natural setting," which for a four year old, seems to be a preschool classroom with a bunch of other kids, all of whom have their own issues.  This makes me a little desperate around the edges.  Q loves those other kids and would happily play with them all day, but there will probably be one less aide in the classroom (budget cuts, you know), which means that there's rarely an adult next to him.  Q does not do screamy kids.  Kids with developmental issues often have screamy issues.  Heck, smaller kids of the more regular variety often have screamy behaviors.  Q cannot get away.  So if he's stuck there, can't defend himself, hasn't the adult help he needs unless there's a 1:1 therapy situation happening - then what?  He comes home fried and doesn't want to go back because it's gone from fun times learning with the therapists and playing sometimes with the kids, to dreading the intensity of the not good parts.  I've seen him flinch at the sound of particular voices after repeat exposure to those persons being unpleasant (yelling is a very bad thing, but screaming and whining just plain sets. him. off.), and I do not want to go there.  So at the very least, there's more to learn before we know exactly what will occur for him.  I'm going to push, though, for more 1:1 therapy time and less classroom therapy time.  Both are certainly useful, but the former is vastly more useful to Q.  And since he's my concern, and not protocol or format or classroom needs, well, we'll see how this works out.

The boy has grown completely out of the stander he's had.  His hiney sticks out as he tries to fold himself down to the tray so he can get to the bowl of dried beans or whatever else is there.  So that particular loaned item will go back to the therapy unit, all cleaned up and shiny.  Tuesday next the lovely PT and the miraculous Guy Who Can Modify All Things will be holding a council on whether or not we're going to be ordering a SN car seat, a new Rifton walker/gait trainer (how can he have grown out of everything at once and so fast?), and when we should be thinking about getting ready to deal with planning for a new wheelchair - it will take about six months from the time we begin the paperwork.  And his AFOs need replacing, a process which begins with tracing the outline of his feet, on Tuesday.  He needs hand splints too, which we'll address the thirty-first with the every other week OT appointment.  Which brings me to what a shortage there is of pediatric therapists, in case anyone is considering a career change.  Q needs to have OT at least weekly, twice or three times a week would be of clear benefit to the boy, but two or three times a month is what's available.  Argh.

Communication devices.  Not much headway.  The episodic SLP guy needs more footage of Q using the device he wants to order before he can write it up to justify for coverage, a process which takes about three months.  I'm seriously considering the iPad, mostly because it's a fourth of the cost of the specialty equipment, but also because it just seems that much more flexible and effective for Q.  Give him a splint to support the extension of his index fingers, and we're off and running.  Just like that.  But it won't be covered.

We are increasing Baclofen with two more weeks to go before Q is at the maintenance dose.  I think it's working for him.  He seems to be making gains in real muscle tissue as opposed to having those tiny, bird-like legs that one often sees in kids with CP or other particular muscle issues.  When I work on his legs, there's definitely more mass there to stretch.  I noticed about a month ago that he has actual lats, a nice change - now to access the other parts.  His swallowing is better on the Baclofen too - better oral motor skill, use of lips, far less excessive tone, more appropriate swallowing and coughing, less spluttering or near-aspirating.  I would so love for someone to produce an accurate dosing system that would circumvent the need to implant a pump, though we'll certainly be looking at that as the best option, given what's out there.

And it's time to get the eyes checked again.  All ten of 'em.  That's a whole morning's activity!

On that happy note, I do believe the boy is asleep (he napped after swimming therapy today) so I'm going to go crash too.  I'll leave you with the verse from the wildly successful not-VBS week.  (Can I get an Amen?)

Taste and see that the Lord is good.
Psalm 34:8

XO.

Frustration and whining

Sigh.

I have been trying to install the software for Q's touchscreen. It seemed as though it was going well. We've had it for three weeks, maybe I should get it done, huh? Heavy and heavier sighs.

Right now I would bet that it's not working because it needs Windows XP or 2000. I have Vista here and will need to go cannibalize something from the CPU graveyard to make this work. This is not exactly a problem. I mean, in a past life I was reasonably handy with tech stuff, with confidence planted in a programming class I took in the early eighties. I mean, I don't think I was ever going to do things technical as a career, but I could at least figure out what my own set-up needed in college (not that it was hard, trust me).

But now? I am overscheduled, out of practice, and after a couple of decades of having consigned that portion of my brain to the back room? It doesn't want to come out and play anymore. (Have I mentioned the overscheduling part? Good. That part of my brain is afraid of the rest of the brain parts out on the playground. It wants a nap.)

This all renders me a tetch frustrated and whiny. Not really the most attractive qualities in a person, so I'll try to be succinct in my complaint(s). Tonight I need to rewrite school paperwork for all four older children, find books for certain people for certain gifts, fill out Q paperwork, figure out hiccups in kids' medical coverage, finish another hundred pieces of a project, grade a bunch of math/algebra papers, and get this thing hooked up so the software can go back to the school district. After I do that, I need to run another load of laundry, organize Q's clothes and food for tomorrow, start oatmeal for morning, recheck portions of workbooks, stack and pack up the kids' schoolwork for the day, and finally, go to bed.

Q had a nap this evening, so I may in fact be "awake" long enough to accomplish most of the above. Our day tomorrow will include four hours of lessons, an hour of PreK for Q, and appointments. Some of these things require that I be in more than one place at a time, and we do this every week. Tomorrow my mom is off and has offered to help with that, but honestly, sometimes it's all I can do to keep the details aligned in my own head, much less explain any portion of the convoluted process to someone else. (Thus the dilemma of often needing help of some kind, but being too busy keeping my head above water to actually ask for any.)

Anyway. It's 11:45pm and I really, truly, with everything in me, just want. to. go. to. bed. Instead, I'm spouting off here, which as you may have noticed, gets me no closer to having ticked off any of the above. It's called avoidance. Rowr.

Most days things really are groovy here. The kids are almost always a hoot, nothing's ever dull, and we do manage to get through practices and school stuff with astonishing forward motion. But today? I'm fried. I want to sleep and I want someone else to divide the burdens with. I can't quite stop the thought creeping in, "This is not what I signed up for." It's not a useful thought. It isn't helpful, constructive, or welcome. It isn't the whole story, or healing, or funny. But sometimes, when Tired has become my address, it's the thought that breaks down the door and tries to steal everything happy.

So now that I've thoroughly bored even myself of this topic, it's time for a small refocusing before I go to check on Q again.

Today four fallen police officers were honored in a memorial service attended by more than 23,000 people. Tonight I am not tucking in babies whose daddy was murdered. I am not dealing with that magnitude of loss. My stuff is sort of petty in comparison, really. My stuff is maybe even mostly the flip-side of blessings, if you will.

I have the means, financial and otherwise, to get my children to two sets of music lessons every week. This is so enormous, there may not be words for it.
I am capable of creative planning, financial and otherwise, in order to make sure that such things can happen here.
Q is rounder this week than last, in part because I've been stuffing a few extra bites into him at every meal. Lord willing, December 2009 will not include a g-tube discussion.
I am here, with the kids, in a role that blisses me out regularly and keeps me thoroughly amazed. That I get to watch them learn and grow and even wrastle back as they formulate arguments based on principles of formal logic... how do we discuss that kind of cool?
It is very cold out tonight, probably in the lower single digits, but the punkins are tucked in warm. Miraculous, I tell you.
My darling auntie came today and stayed with the bigger ones so I could take just Q to his speech appointment. She is the sock maven, sock whisperer, comptroller of the sock collection. When she visits, she works magic over that basket and lo, we've footwear. It's astonishing to me, every time. Not that she matches them, that she finds their matches. You know what I mean, don't you? Yes, yes. I see you nodding.

And there's so much more, you know? Laundry = clothes to wear. Dishes = food enjoyed. Appointments = living, breathing, healthy kidlets. Obligations = the blessings of people and those relationships held dear. And so we give thanks in all things.

Now that I've talked myself out of a spiralling fit of exasperation, I'm going to check on Q. If he's asleep, I shall reorganize my to-do list above and see how much I can pack along to do while the kids are busy in workbooks during lessons. Still? I could kick something over the whole XP vs. Vista scenario. I want to say that I used to be smarter about this stuff, but the truth is I either had the time to take it on or someone upon whom I could rely for either small tweaks or Herculean help. More, but diminishing rowrs.

G'night, you lovely people. Hope you're resting well, or already have.

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.

Wrangling

I had a meeting with the school district this week.

Their email:
It sounds like we can offer services in the classroom at this time. If you are not able to have Q attend due to scheduling issues you have the right to not participate in special services. If you would like to do so I can send out a Written Notice and letter to explain this formally. Let me know what you decide. Thanks,
_____

My response:
Thanks, _____. I want to be clear, though, that scheduling is a tangential issue for me. While it presents certain difficulties, none of those difficulties is insurmountable. The original issues remain: First, which services will best meet Q's needs? His neurologist has indicated (and his pediatrician and I agree) that an ongoing combination of CTU and school services would be most beneficial to Q. Second, how do I keep Q as healthy as possible while maximizing his use of those services? This goes immediately to his ability to participate in learning -- as we've discussed, when he's ill his already reduced capacity to participate in daily life becomes non-existent, right down to feeding, never mind learning or therapies.

I am fairly unconcerned about Q's basic intellectual development -- his home environment is rich and varied, presenting age appropriate and older learning opportunities. However, I cannot provide for him the access to specialized equipment and personnel which is available through the ______ school district-- all of which have, again, been clearly indicated as part of Q's best case scenario by the doctors in charge of his care. I believe his IEP would reflect the same, per the school district therapists' evaluations.

Gotta go feed the boy again. Thanks again, _____.

Best,
_____

This does not remotely represent the whole long conversation, but it might, maybe, convey my frustration with the process. He's had an IEP since January. No services, but meetings here and there, and plenty of patting of my head for suggesting that he is even approaching medically fragile. He is borderline immuno-suppressed. Well. I'm assuming he is, since we don't pass a winter without steroids in the nebulizer, his first respiratory diagnosis came before he was two months old, and his functional respiratory diagnosis is Reactive Airway Disease.

I resent, yes, I resent that these meetings have morphed from an atmosphere of camaraderie to one of suspicion. Or something. They began with us all being pretty open about the things available to Q, the therapists being magnificent (they still are), and have ended up with me bawling my way through the last one, seven persons who work for the district vs. me. The PreK teacher seems fantastic. The therapists seem fantastic, one of them who met Q a year ago going so far as to gently amend the summary of Q with a few details of his personality, which she clearly finds to be delightful. The rest? I don't know. I imagine that it's much the same as in other professions, like medicine: doctors talk down to their patients because so many patients refuse to participate in their own care or literally can't develop a vocabulary that will help them to do so. It's frustrating then for a patient who understands more than your average bear to be treated like an imbecile. It's frustrating for the doctor to know things that could change that patient's life forever, only to be ignored.

I'm about to fall over on my head, so I'm going to sign off and sleep, I hope. Q is snuggled up with grandpa, so now's my chance. I've got some writing to do elsewhere and then, next up: the summary of Q's current activities (I hope).

Hope you find yourself overwhelmed by kindness, sleep-wealthy, and thrilled to be where you are. Pax.

Plllll...

I hurt my back cleaning out the house. Wah. I'm all whiny about this, because the kids were going to be here last night. They aren't home yet, which I'm sad about, but at least this way they get to be with their dad for a couple more evenings. But since they aren't home yet, I was looking forward to really digging in, hauling out more stuff, all the way into all the corners of every single room. Or as close as I could get to that in an extra 48 hours.

Instead, I am working out creative ways to hoist Q, taking those half doses of Vicodin and muscle relaxers only at night, because if I'm going to be here alone with the boy, I need to be able to drive and all, even if it's not likely that I'd need to. I'm glad the weaning of the meds is going well, because at least then I'm not too worried about that -- seizure activity.

A friend has been here helping a bit this afternoon so I don't have to lean into the dishwasher, lift laundry baskets, crawl into wierd and awkward positions... Anyhoo, she's about to take off, so I'm going to try to feed the little monkey and then somehow entice him to nap. When I've tried to get him down in the afternoons lately, he's cried piteously, as though I'm somehow torturing him by noticing that he's tired.

Goofball.

XO, hope y'all are well.

Shortnin' Bread

This will be short because my eyes and hands aren't working very well together. I think dextromethorphan and I may be a mismatch, but that's another story. Well, maybe not, but it's not what I'm talking about right now. I have one girl down with pneumonia, two with ear infections, and Q is either puking up any food that has the barest hint of texture or refusing to eat altogether. I'm hoping that he's just "that age" -- the one where he exerts his opinion -- but I keep thinking about g-tubes and wondering how long he can go on with this kind of finicky nonsense before he actually shows weight loss. Thank God for that Boost stuff. At 1.5cal/ml it doesn't mess around.

Q got up around 2, didn't settle well, then again at 4, hollering, which he rarely does, and took a good while to get settled again. He almost napped, but then gave a little start and woke up with the rattle of snot in his nose. I'm about to go put him down now, he's all dosed up for the evening, and I just need him to sleep. I'm all loopy and I thought it was the Mucinex (took the mondo dose), but it should be gone by now, so... I'm not pleased with the alternatives. I don't have the time or other resources to deal with being that sick.

Gotta scoot. The boy and laundry and dishes and vertigo are callin' my name. I'll whinge about the pecularities of EEG scheduling some other time.

Thanks for your prayers.

Oremus

I have just a couple of minutes before Q's ibuprofen really kicks in. His fever went from 101.3 to 100.3 in about half an hour, thanks to the last dose. I'm popping in to ask for prayers. We're having a cold. One of those very sore throat, barky/croupy coughing kind of cold. This particular bug, having hit Q's neuro function as they often seem to do, has left him jumpy, with much crying, plenty of coughing, and a gag-reflex that's so sensitive that he lost his supper last night because the homemade mac and cheese wasn't perfectly smooth. Perfectly smooth mac and cheese equals glue, so I didn't want that... Anyway, we wore it. This morning he kept down the pears and blueberries, all two ounces of them, but lost about half of his Boost (FKA: Just For Kids). Avert your eyes if you're nauseous or have those kinds of "issues." I could tell that it was about half because it had no red medicine (guaifenesin and a decongestant) in it, nor any of the herbal stuff for inflammation that's violently yellow. It was just plain white. Hallelujah.

Before I run off to drip some more 1.5cal/ml stuff into his little head, I'm asking for some prayers. My arms are pretty tired from carrying the snuggly punkin around. I know he's losing weight -- yesterday was not a good eating day either -- but he's still around thirty pounds. My back can take this, but my arms and shoulders are waning, I'm afraid. His respiration rate was 32 breaths/min. while he was sleeping. I'm pretty sure that this is due to the fever, which tends to be a bit higher than the readings I can get -- after this many kids, I find that I'm pretty accurate when just feeling for the temp, you know? I'm guessing that he was closer to 102. Dehydration may also play a role, so I'll have the cup of water and syringe for him in just a minute. He's not sleeping very well. His nap today was about twelve minutes, though he could clearly have used more. I started him on Xopenex and Pulmicort last night because it's clear (to me) that the inflammation in his bronchii is driving most of his discomfort and inability to swallow. I see no spots or other signs of strep in him or any of the other kids, just croupiness (so far). Nighttime tends to be significantly harder when he's sick. The virus seems worse, my arms more tired, the options fewer.

Honestly, at this point if I thought it would have an impact on the duration of illness, I'd take him in for IV rehydration, not because he's so desperately in need of it (though I'm watching), but because aspiration is always a risk, orders of magnitude moreso when his tone is floppy as it is now. And because he needs to have some calories and then sleeeeeep. And because aspiration risk rises and just plain freaks me out when he's crying through an entire feeding.

So if you don't mind praying, we could use it. The big kids aren't liking this bug, but it's not affecting them the same way. They can swallow medicine and it's helping them pretty quickly. They're having tea and other soothing things as well, listening to audio books, lolling in the sunshine, and generally lying low, but none feeling as sick as Q.

K made grandma a big old pot of tea when she was feeling yucky with the same bug a few days ago. It was much appreciated, and no one will ever bring up to her that it was Organic Mother's Milk Tea. "To Promote Healthy Lactation." I considered using this to introduce an object lesson on reading the whole phrase, vs. just the beginnings of words or phrases, but I think I'll find another opportunity. One that does not involve me laughing 'til I'm breathless.

And, because I was going to post the following last night (but became waylaid with, well, let's just say "laundry")...

I just love PW. Check out her recipes, her gorgeous pictures, her hunky hubby, her homeschooling posts and information. If she weren't so nice, I'd be just a smidge jealous. (grins) She's an inspiration, especially in the smart, um, alek, department.

Hope you're enjoying the spring -- we've hyacinths and violets, birds gathering twigs for nest building, daffodils and tulips and fluffy pink cherry trees. Aside from the wretched throat/not eating thing, it's pretty nice here.

XO.

Renewal/update

I should post something. Really I should. Right? It's late, though and the kids are all asleep and we have a big day at church. Well, as long as I'm here and you're twisting my arm...

Big weeks, and they keep flying right on by. We've had some gorgeous weather. Think shorts and short sleeves. Think planting peas and potatoes and onions and garlic. The garden dirt is all aerated, mixed, rich and loamy, like something you'd want to scoop up and eat, had it not been most recently the chicken yard. Now the rain is back, just in time to water the tiny sprouting peas, encourage those potatoes, and hopefully ruin at least a couple of onions or garlic. Seriously. I never thought I'd be fine with the decline of baby vegetables, but who actually needs two or more rows of onions and garlic? I guess if they all grow and the economy really tanks big, we'll have to rely on them for immune system support, so never mind. Pray for raging success. Thank you.

The evil sinus bug that's been trying to knock some of us flat seems to really be leaving. I think the recovery is thanks to a combination of getting to play in the warm sunshine and Mucinex-D. After all this I'd do a commercial for them. Well, as long as it didn't involve the green slime characters.

The big kids are doing well. Piano and violin practice go on, flying toward spring recitals. Q is progressing nicely.

Last week, he got to play with the PRC ECO. Wow. More cool stuff. He was really interested in the screen and the colors. Getting to choose which color of ball got dropped down the tube was awesome for him. The funniest part is that toward the end, when it got a little bit complicated, I swear he totally got it. The settings on the screen with a switch (button to press) combination meant that if he wanted the red ball, he had to wait until the green box highlighted the splotch of red on the ECO screen, then hit the switch. The Speech Path guy doing the testing then dropped the red ball down the tube maze and Q giggled accordingly. In order to move on, Q had to hit the switch again to restart the color selection process, then wait until the green highlight box got to the color he wanted and hit it again, before it moved on to say, purple, which we didn't have in actual balls, just as a choice on the screen. After a couple of times of watching the highlighter box go through the whole set of colors and hitting the switch for random colors, Q settled on red. He'd hit the switch, the ball would go and he would giggle, and then he'd hit the switch again, rapidly, twice, so he was both restarting the selection process and hitting it again before it could move on to a different color. And the ball would go and he would giggle.

He did this a few times in a row, getting faster and more appropriate each time. Watching him, I was thinking that if he had that box (ECO) for a few days, he'd gladly spend an hour at a time with it, much as he has when he's had help with other toys that he figures out fairly quickly, but has to work with to perfect his combination of motor planning and cognitive planning. I really think that if he had it for an hour, he'd figure out that choosing the arrow means that you go back a screen to three choices of "games." That the eraser makes things go away. That yes, he likes purple, even though he doesn't see it as much as say red, and that it might even be his favorite.

Q tries to sneak up to the mouse or keyboard if he's on someone's lap here at the computer at home. He very often succeeds. He's erased things for me, the sneaky little monkey. (heh) And in OT, he uses the touch screen and the head switch set-up with flair. This week he used both to get to new pictures and even follow directions. His motor planning trips him up constantly for the following of directions, but he gets it eventually. I wish I had something more to just give him, something to make this less of a struggle, especially in the way of equipment.

Speaking of wishing for things, Melanie has a couple of great posts up at Daniel's blog: Better Than Normal. She's quoting someone else who's blog I haven't read, but after that entry (4/09/09), I will be. If I can ever get there (too much to do).

Right now, I'm going to go sleep. Perchance to dream. Or not -- sometimes those dreams just poke at a person and it would be nice to be not poked at in one's sleep time. It would be nice to just sleep.

Have a luverly Easter, all. Hope you're celebrating Resurrection with your dearly held ones. XO.

Wah

I'm sitting down here to take a break from trying not to tip over. I'm sick. (Shh. Don't tell the children.) I keep doing things today, slowly, like reorganizing the pots and pans cupboard and finding the corn syrup bottle leaking, diligently, as if it should leak thoroughly or not at all. I unloaded the dishwasher, slowly, because leaning over was testing my proprioception skills, which are apparently on vacation. Those spiky things in the drawer parts of a dishwasher are kind of scary close up. I could have had one of the kids do it. They're generally a good help. But then I'd have to talk and that hurts my head. Also, they can't unload a dishwasher quietly. Can't. And I would peel my face off if there were one. more. gratuitous noise going on here. Excessive, you say? No. The slurping of liquids is notnotnot okay. Not even on the opposite end of the house with the door closed. Whispering is gooooood. Holding very still, breathing ever so softly is better. Sleeping might be best, but then I want them to sleep later, when it's dark, so no napping!

I have to go try the syrup mess again. The soaking is bound to have loosened it up, right? And the muted sound of the keys gently click-clacking under my fingers is rapidly becoming a torture akin to those found in the seventh circle of hell.

Stoopid germs.

What?

I don't even know what to say. Q slept from 11pm to 2:30am last night. He was up intermittently during that time so instead of heading off to bed myself, I stayed up and ran and folded laundry, cleared out the cracks and crevices of the living room, and generally made myself busy until the boy decided to get up for good. Wah. I dozed here and there on the couch during the dark hours. Q watched what is probably his lifetime limit of PBS hours...

I am so tired. There are grades of tired, you know. (Have we discussed this before? I can't recall.) There's the yawning, sleepy one. The one where your eyes are light sensitive and you keep your sunglasses on as long as you're awake. There's the faintly to fairly to severely nauseous, which is where dizziness or vertigo usually begins. There's the one where your arms gradually lose feeling -- things fade as your neuro function drops. Worst of all, the one where your eyes are perpetually bloodshot but you don't feel tired anymore at all -- until you wake up at a long stop light or in the middle of bedtime stories with the children now peering curiously at you.

This stage of tired involves feeling weaker when I go to hoist Q or S, a perpetually drier mouth because it seems I'm forgetting to keep it closed (what the heck?), and an evil headache. My mom is finishing up with Q and his supplement -- hopefully he'll be stuffed just full enough to sleep all night or that the stars will have aligned to overcome whatever his issues were last night. I'm thinking I may have missed his seizure meds -- the first time in many, many months if that's what happened. I thought I'd drawn the medicine up but not administered it. I looked for the syringe but couldn't find it. So rather than risk a double dose... Or maybe it was the tapioca pudding he ate at supper last ngiht. Every time he's eaten something in which eggs play a starring role I spend most of that night up with him. Duh. Not a good combo, if both those factors played a role. Or maybe he was teething just enough to keep him restless. Could be that he was hungry or thirsty or needed some help to finish the crossword puzzle. Who knows.

But even with all of that, he's been Mr. Congeniality -- bright-eyed and giggling through the day, except when he passed out in his chair. And we've had a good day. Funny how much one can achieve when one is unwilling to accept possible outcomes other than the affirmative ones. We (I) also got to enjoy some interactions with folks, mostly strangers, who found my kids delightful and said so. We got to spend part of our day with one of my cousins and his little niece -- both of whom we'd love to see more of. They're great fun -- now to get the schedules lined up, right?

So I'm going to hit Publish and hope that the syntax holds up under scrutiny. Not that I could care at this point, even if I really tried.

Hope your weekend is lovely and that your punkins and honey bring you joy. Give them a reason to.

XO

So...

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.

Wah.

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.

Did you know...

...That egg does not come off a van window or any other part in a car wash?

Me either. But I do now.

Oh -- and, guess what? Q is throwing off his blankies in the night. Again, this is one of those things that may not sound like much but the boy has been practically immobile in his sleep for the longest time. It's very cool indeed to have him doing things that lean heavily toward the neurotypical side of behaviors. C'mon, let's happy dance. A one and a two...

And now he's sobbing again. He must have had a nightmare during his nap because he got up just plain inconsolable. Food wasn't the answer. Random noises are ticking him off. Losing his grip on his toy is enough to bring the world to an end. I thought he'd be happier with a fresh diaper but even clean pants haven't mended his little heart. Well, he had a few minutes of pleasant conversation. Guess that was his limit for the day. Heh.

Wah. Off to rescue E -- who rescued Q. Sometimes I wonder about him. He's all snuggled up to her right now, shooting me sidelong glances that say, "See, mom, somebody cares. Somebody gave me what I wanted. Ha. All I wanted was to be snuggled/carried/nuzzled/carriedcarriedcarried. Sheesh, lady."

Wah

Q is lying on the floor, on a nest of blankies, wrapped in more to keep warm, playing like a task-oriented child, with some beads strung off his Baby Einstein caterpillar music toy. I've had him asleep twice already and my back is whining at me as a result. And let's be reasonable: how long can one expect to walk the floor with a limp 25 lb bag o' sugar in one's arms before just running out of steam? Does the time of day have anything to do with the rate at which one approaches exhaustion?

I just wanna sleeeep. I wanna curl up in between those flannel sheets, pull those covers up over my ears, and just. sleep. At an hour at which one might expect to sleep. Instead of somewhere around 2 am. Or whenever the boy decides to finally collapse. Wah.

Still with the beads. Lots of yanking and waving there. Lots of bopping the nice buttons on the caterpillar's belly to make the lights and music go.

I'm going to try to sneak under a blanket on the couch and see if he'll let me nap a little before he needs something again.

(Have I mentioned that sleep deprivation is my least favorite form of torture? I have? You don't think me pathetic, do you? Please say no, even if you're whispering about me behind your hand. I'll pretend. Wah.)

Wah.

(A momentary pause in the hilarity in the next room. Ah. The beads are waving, the fake orchestra playing earnestly once again. All is well.)

Wah wah wah. Wah wah-wah. Wah-bitty-wah. Wah wah wah.

There go my language skills. Sigh. (Buh-bye! Nice knowin' ya!!) On the bright side, lesson planning is done well into March so maybe I'll have recovered myself by the time I have to be, you know, all language-y again.

'night. God bless.

(wah)

Wallowing

Later, when I've had some sleep, I'll look back on this and roll my eyes. But for right now...

Let's indulge in a few moments of self-pity, shall we? Q's sitting on my lap, head full of snot, happily kicking a small stack of papers into submission. He went down at about 12:15, and got up at about three to nurse. The ibuprofen had worn off and he had a fever again. While we waited for the next dose to kick in he passed the time by crying. At 4:58 he fell asleep, suddenly and hard. I laid him down a couple of minutes after 5 and he slept until about 6:30. More crying. Finally, exhausted, he laid on his boppy, bundled up on the floor, with Elmo's World on PBS. I petted his little ears and neck and he slept again at 7:30.

(whispering) I don't know if I can do this again tonight. The tears are just leaking out. I have a stack of papers to attend to, appointments to schedule, and cleaning/organizing to do.

Meanwhile, school and dishes are getting done. Somehow, things always continue. My folks will be here again this evening without having to head out to work tomorrow, so I'm sure tonight will be a little easier. Not that they couldn't use some sleep of their own. E just came and took the boy off my lap to play with toys, so I'm going to go get his next round of meds going and maybe clean the bathroom. Shoot, maybe I'll even get a shower. (smiles)

Okay. Tears over. This episode of Being Overwhelmed has been brought to you by our friend estrogen. And now we're moving on.

Church and kids' choir tomorrow morning, then in the evening we're making Valentines for our loved ones. We will have chocolate, of course, and some of the Apricot Pecan Amish Frenemy Bread* we made last night. It'll be great fun. The Christmas cactus, now renamed the Valentine cactus, has a baker's dozen of fat buds on it, each in a different stage of not yet blooming.

And now the kidlets are congregating, looking for jobs to do to tidy up. Awww. (Who are these children and where did they come from? Maybe mommy should cry more often. Snort.)

Have a luverly weekend, all.



*We now have twelve bags of starter. Visit this house at your peril -- you will be leaving with at least two of those bags somewhere on your person. It is useless to resist us.

Wah

Q is down, thoroughly medicated, only coughing a little thanks to the NEB meds. Started Xopenex and Pulmicort earlier this evening after a bath failed to clear him out sufficiently. The breath sounds are high but sound a little like a creaky freighter. I didn't hear anything alarming in his actual lungs. With both a history of bronchiolitis which would make him vulnerable to respiratory issues and a brother with asthma, this makes me a little alert. He's been out for about half an hour which either means the meds are working well and he'll sleep all night, waking up a freer breathing boy, or he's gearing up to be awake at 3am again.

Whatever. I've got to go finish up some paperwork. What does one do when the government insists that they need things that don't exist? One finds a more reasonable person in the office. Having some experience working in government, if you find a more reasonable person, you should really get a picture of the two of you together. Why? Because he or she is likely a temp employee and won't exist when you return to inquire why your paperwork was marked as incomplete when you clearly, precisely followed what the reasonable person asked you to do.

Sheesh. Thank God the house isn't too awful tonight. I'm just flat out of energy to do the nightly tidy up. And never mind the laundry. Everyone has plenty of clean clothes to get us through the next couple of days. There's piano in the morning. Have to make sure I have Q up in time for the nebulizer before we go...

Pray for us, will you? Thanks so much, and back at ya.

XO

R.O.C.K. in the U.S.A.

Hey. So you're expecting a post or something, this being a blog and all, yes? Fasten your seat belt.

Tomorrow (or rather, today) we're flying South for the kids to have time with their dad and for me to delve into the remains of our family stuff, now simply the contents of a storage unit. (Could I maybe wake up and discover this has all been a bad dream? Please??)

K threw up several days ago but was feeling better almost immediately. E spent Christmas Eve on the couch, watching whatever TV anyone turned on or off for her, eating nothing, drinking a little, but feeling pretty well recovered by Christmas day. Last night, or rather during Wednesday's wee hours, Q started throwing up. This was complicated by the fact that S was in my bed, too wound up to properly sleep. Never mind Christmas, soon they'll be seeing daddy.

So Q's been cranky all day, it's been tough to pack (though the big kids, the ones who'll be off with their dad, are all done and ready to go), and then there was the last minute shopping trip. Gathering the last of the prescriptions and supplies. One of Q's scrips can't be refilled yet, but we'll run out while we're gone. Argh. Thankfully, it's not a seizure or startle med. You know, I once totalled up the monthly expenditures on prescriptions here. Not including meds for the nebulizer, it runs around $400 per month. Good grief.

I've been noticing that whatever radio station I happen to have on these days seems to have some sort of notions about being the soundtrack to current activities in my daily life. This has included strange runs in songs: Nice day to start again.....Don't mean nothin', no victim no crime, Don't mean nothin' 'til you sign it on the dotted liiiiiine.....She used to look good to me but now I find her (and our food arrives at the little drive-in of my erstwhile college years as we hear playing:) simply irresistible. As the kids are initiating a conversation about what happens when you're old and you die: Feels like I'm knock, knock, knockin' on heaven's door.....Come on Baby, don't be afraid.....Seems like only yesterday but it was long ago.....Runnin' against the wind..... Driving away from my grandfather's funeral and that little town: The things you say, you're unbelievable.....We could make it better now, Tell me boy wouldn't that be sweet.....Hurry boy, she's waiting there for you.....Love me when I'm gone.....All you do is call me, I'll be anything you need..... That was a great concert. Fifteen years ago, was it? So was: East end girls, West end boys.....

And tonight: R.O.C.K. in the U.S.A. (sing with me) Rockin' in the U.S.A. As I was pulling out of the parking lot to race home, divvy up the stuff and pack like mad, it made for a good upping of the adrenaline kind of song. The ubiquitous Christmas music has probably kept me from losing my mind listening to all those old lyrics. Silent Night is pretty predictable. And peaceful. And welcome.

So my mom has just finished sewing bibs for the drooling Q--one is a super boy bib 'cause it looks like a cape. For him to wear when he's feeling super, of course. The bibs will go into the bags. I had a nice chat with the airline about how to do things with a special needs kiddo. We'll be getting there early, of course, and have a little extra time for boarding in order to get all the stuff stashed appropriately.

Please pray that Q feels better. It's so hard to have the normally happy little guy feel so very bad. It just breaks my tired heart.

I was packing like mad a little while ago when the news was on. Guess what. Oh, come on. Guess.

It's going to snow while we're sleeping. Enough to complicate traaaaaaaaffic. And make us take extra time and maybe detours to get to the aaaaaaaairport. At least it isn't like last year's holiday trip to see daddy, with all it's fun of trying to get four kids ready to travel during our five days without power thanks to the wind and freezing rain.

Oy.

This is funny, isn't it? I mean, isn't it?? I'm sure we'll muddle through just fine and be no worse for the wear. It reminds me of the day we had when we were flying from Salt Lake City, the day after the post 9/11 regs were instated. Since the Olympics were about to happen there, of course it was the tightest of all possible airports that day. K had an ear infection, G and E had recovered, I was pregnant with S. We got there the full 2 1/2 hours ahead that they'd recommended only to find that the line to check in stretched at least five times the distance it usually would. We spent the day in the airport. K hadn't wanted to eat, even though the antibiotic was making her feel obviously better, so when she wanted to drink from the 44 oz. cup of Sprite, her daddy let her. She sucked it down and we smiled, thinking, "Thank God she's feeling a little better. Maybe food will be next!" Nope. She started running around, chasing G and E. Then she started to cough. And cough. She coughed so hard she threw up all the Sprite on the floor of the silly little airport restaurant. When a certain someone tried to get the attention of the employee behind the counter to ask for a mop, etc., she couldn't understand him. It seemed there was a language barrier. Eventually, he said, "MY DAUGHTER THREW UP ON YOUR FLOOR." Someone else came up from the back to take care of it. Rather quickly. (Heh.)

I'm sure tomorrow will be nothing like that, though. It'll be smooooooth as can be. We just have to get through security with all our prescriptions and Q's special foods (hopefully the Dr's note will arrive via fax first thing in the morning), and we'll be fiiiiiiiine. And anyway, even the potential crummy scenarios are sweet because of whom they're shared with. Even the strange and stressful stuff can be oh, so precious. Even really, really funny.

I'll be "out" for a while. I've no idea when I'll be next to an internet connection. Perhaps not until January 12. While I'm "out," go take a look at this nice person. She's come across some cool stuff about the female brain and has said she'd be writing about that, among other things. Compelling stuff, that neuro function thing. We had her Chocolate Bread Pudding -- made with croissants -- for brunch on Christmas Day. (See my eyes rolling back in my head?) Maybe if you ask nicely, she'll post the recipe. She's nice that way.

Have fun. And a Happy, blessed, peaceful New Year. Thanks for thinking of us all. I'll be back soon.

Mwaaa.

Funny, inspiring, silly, tra la

HA! It's nice to know that children are so, um, what? Predictable in their roles as darling little entropy machines? Or just that they're much the same wherever they may be, whatever they're doing, and that when I find things just like this, I'm not crazy.

More with M-Mv. I really like hearing others' opinions on these things. "Eavesdropping" on discussions which provide me with material for further mental mastication plain ol' rocks. But it's her last lines in this post which, for reasons better left unsaid, made me truly laugh out loud.

This one makes my heart sing. I'm posting this in case you don't read the above and then go on to follow her last link. I see a bit of her descriptions in my own offspring: parts of their darling daddy, parts of me, that meld so satisfyingly. It makes me proud. I am privileged indeed to be here, mothering them.

Sometimes, lost in the volume of paperwork, meds, therapies, and sheer busy-ness of life, I slip in my focus. Tonight, while doing dishes and fixing dinner, I spent time on the phone with a pharmacy, then doctor's office, then pharmacy again. When I got off the line, I heaved a sigh. Once in awhile, little blips in the rhythm of things around here remind me that not much about our configuration is what one could call "usual."

And yet. I have those children who will notice things. The ones who will of their own accord spend long periods of time watching people making bobbin lace, spinning wool, throwing pots. Who will spend all afternoon with their hands in the "petting aquarium"--their favorite place at the zoo. Who will ask intelligent questions and wait politely for the answers--which often bring more, equally relevant questions. I have children who pounce gleefully on science books, indeed upon the whole science section of the library, and who are sad when we must leave books on the shelf for others (some of them are little yet, still learning about this). This delights me no end.

Sometimes, when I get just under eight hours of sleep in two days, it's a little tougher. It doesn't matter how tired, or sick (I'm not sick, just sinusy and sneezing and feverish and not sick, thank you), or mystified one might become. There is always a call to dig deeper into the material and myself, to want more, be more, to understand and inspire the punkinheads and love the place where I am.

And then, see: I have these children who notice things.

Awesome...

...I'd written all of the above last night and when I went to post it, the internet connection was gone. I took is as a sign from God and went to bed. Q went down after midnight and I followed as quickly as I could. A very good thing too, because of course he started waking up every 20-30 minutes at four. Did I mention how I'm not sick? Because I'm not, you know. Never mind that my favorite part of the week was when I was waiting for the basket to be installed on Q's chair at the big supplier/pharmacy place. I went to grab some more Thick-It and ran across mentholated Kleenex. Oh. my. heavens. This is one of those times I'd like to swoon in appreciation, but sadly, it seems I'm just not that kind of girl. Sigh.

Anyhoo, the boy is down so I'm going to bed right now and I'll finish packing in the morning. Wheee. Pray that he stays down, please? I neeeeed to sleeeeeep. Wah.

Sweet dreams.