Saturday, August 29, 2009


Q's sleep thing has sorta kicked my butt this week. The worst was the morning that I handed him off to my mom at seven and went back to bed. I slept until nine. I was pretty sure that I'd had some sleep the rest of the night because I'd kept waking up. Wah.

But we're all basically healthy, and glad of it. Speaking of which, a friend's 12 year old sure could use your prayers. He's having bones put back where they belong in the morning. We were there when he fell. There was really no question that his arm was broken. Bones don't bend like that. Poor guy.

The floor is mopped, the kids clothes are folded and in their own baskets to be put away. Sadly, the dishes are waiting for morning -- too much noise, since Q is out. I pushed them to the back burner so I could do the bedtime routine with the girls. And then mop some more, because that's quieter than dishes. I'm all in, folks. Hope you have a lovely weekend, all.


Monday, August 24, 2009

Random catching up

I think I've moved beyond the revelations from the last couple of weeks. I think it might not have mattered what I had done a-way back then, since none of what happened was about me in even the smallest way. I need my head to work well, in the here and now, so I don't have time to spend on things which ultimately aren't my responsibility, no matter how I feel about those things or the people involved. It just can't matter anymore, certainly not enough to take me away from the stuff I really am accountable for. Maybe someday I'll have an opportunity to interact with those folks again and it can be a healing thing. But for now, this needs to fly off in the wind.

This morning I discovered a... (whispering) tiny watermelon in our garden. We've never had much success with melons of any kind, but there are two itty bitty ones out there -- about 4 and 5mm. We have a bazillion green tomatoes. We've gigantic still green Romas, jewel-like yellow pears and baby red ones. On one side, there's a small plant with a single fat green tomato that just keeps getting bigger. It's not a beefsteak, it's an heirloom that should be yellow and red striped when it decides to turn. There are two inch-long yellow crooknecks on gigantic plants with several dozen blossoms. No idea why there aren't more actual squash. No pumpkins yet, and they're running out of time to produce anything useful. There are cukes climbing up cages -- smaller burpless and then, the so-far dark green lemon cucumbers. They're giggle inducing, like Dr. Seuss fruits. For unabashed pretties, we have begonias producing blossoms like they've got only minutes left to do so. There are fat Marshmallow fuchsias in baskets, million bells in as many colors, and big blue "mornin' gories" by the front door as well as tiny deep royal purple ones, further out, almost under the giant maple. The two beds of impatiens are funny -- fluffy as can be, one red, one pink, both in deep shade, looking almost plastic in their perfect symmetry and buddedness.

It's sweet, this place. We've had good lettuces and "bropplies" this year. Soon it will be time to dig up the potatoes. Wanna come over?

The upside of yesterday's adrenaline rush was discovering that Q is not allergic to bee stings. Poor little ducky. He jumped when it flew by, but was still excited because he's always intrigued by new things to discover. But then it landed and just stung him, faster than I could wave it off. The sting was barely inside the crease by his mouth, not quite under his nose. A quick paste of baking soda, a half dose of Benadryl, a shot of ibuprofen drops, then some homeopathic anti-inflammatory cream and he was beginning to look himself again. For about an hour he had looked like he'd lost a fight with a wee angry middleweight. But by this morning he was fine, and I'm almost over wanting to eradicate every api-thing I can find.

The last several days, really the whole last two weeks, were so neat. Hosting kids who don't get access otherwise to such nifty creative teachers was awesome. Having kids who were excited to be there was awesome. The volunteers were awesome (and funny besides being wonderfully helpful). The end shows were super, the church service tear-jerking, the kids accomplished. (I've added some music -- pieces they performed.) As was the case last year, I've never seen such a bunch of smiley tired people -- even if most of us did come down with "heads full of concrete" sometime during the week, to quote the pastor. I think we're all blinking, adjusting to not barreling through traffic to fine arts classes today. I know my crew is.

One of the most piercing moments came the first week, just after one of the camp counselors had come in and expressed, in some awe, how cool this all was for the kids they'd brought. We were whirling, absolutely flying to keep eighteen palettes full of paint, water containers fresh and full, canvases supplied, messes mopped up. All hands were on deck. I had the counselor's comment fresh in my mind, the theme of "You've Got a Friend in Me" was burned on the back of my eyeballs, and our pastor just then passed swiftly by with a tray of freshly filled water containers, trading them out for the muddied ones. I thought to myself, with a feeling of dawning recognition -- "Ah. Communion. Of course." It was sort of a distilled moment, where the clouds open, sunbeams float straight down, and if you're lucky, the angel choirs' tones come wafting in. We had those dulcet tones -- our angel choirs wanted more paint, pronto.

What a privilege to have been a part of shy kids coming out of their shells to perform, awkward ones revelling in form and line, and the creatively inclined breaking new ground with themselves -- all while forming new friendships. Twas lovely.


Swerving wildly... I need tips on how to let someone down gently.

It's rather an awkward situation. (When isn't it?) I've spent a grand total of maybe ten minutes speaking with this person, spread out over perhaps three years. In that time, he's never inquired about anything of substance about me, never acknowledged my children. Well, that's not true, but never mind, that's even more awkward. And yet, he's managed to compliment me, pointedly, specifically, and awkwardly, and has sort of started following me, a bit. I know absolutely nothing about him, can't even pronounce his name, I'm always in motion, and practically run away from him, but he persists. Geez-o-Pete. How does a person not get the hint?

Do I say, "I'm sorry to have never stopped and looked directly at you when you speak to me, but I'm kind of busy and I will always be so." Or, "Please stop commenting on my hair or I'll have to shave it off, just to make you stop. I'm begging you. Don't make me shave my head." (If the hair is attracting someone who lacks even facile social skills, shaving it off seems a perfectly reasonable solution at this point.) Or maybe I should buy a big, gaudy ring, and pop it on my finger when he approaches, or just wear it whenever I have to be where he's likely to be?

I've considered doing that before, just because I get tired of the odd little things that happen at Target or the grocery store, the park, the library. Let's just say that there aren't many men who are in any way wholesomely attracted to a single mom happily trailing five kids behind her, who also then happen to be a person I'd want to hang out with, on any level. Most of them make the oddest assumptions, along the lines of one of my formerly FAQ: "Do they all have the same father?" Some of these, um, "men" are wearing holey t-shirts which just yell out, "HEY! WANNA BE MY BABY MAMA? YES, YOU DO!! C'MERE!" Only without proper punctuation.

Perhaps what I really need is a knight protector. Do you suppose Lancelot is available? Nah, too much baggage, what with his smarmy arrangement with Guinevere. And poor Arthur -- not a good BFF situation there. Maybe some other version of knight, then. A tall and smart someone with a wicked sense of humor who wouldn't mind looking fiercely at this person to frighten him away, hopefully while cracking jokes with me. Maybe a kah-NIG-et is what I'm after then. Just as long as he doesn't smell of elderberries. It might be hard for this other person to take the whole thing seriously if I'm in the background, shaking with laughter.

I digress.

Any applicants for the position of K. in S.A.? All male applicants will be considered, including anyone of a different orientation -- I've long heard that every woman should have a good friend who's happy. The position posted pays nothing, but I'll make ya brownies. Short repeat appearances may be necessary, at least until Mr. IlovebigfamiliesandIthinkyourhairisbeautiful (First name: Iloveyourdress-ogleogleogle-wherewereyou) gets the message. After he gets the message? Well, I'd still pop up some popcorn and watch movies with you, your call.

Okay, so since I'm unlikely to get (m)any applicants for such a volunteer position in this job market, I'm asking you, dear readers -- please for to have advise with kind deconstruction on scary man opinion and for always nearness?

Seriously. I'm out of practice shooing guys away without breaking them. Please don't make me break him. I hate that. It hurts my heart and it makes me cringe. For years.

Wah. (Head in hands)

I'm off to order the last bits of consumables for the kids. Please. I need help with that person. I need this not to wreck an otherwise very much appreciated part of my life.

Thank you.

Tuesday, August 18, 2009

Deep breath

I'm still stinging and feeling nauseous. I wish I knew how to speak of this in a useful way. I wish I hadn't been so... what. Trusting? I don't wish that. I believed I had reason to place my trust where I did and I did not do so blindly. What then? Perhaps that's the thing that has tipped me on my head -- I don't know how to respond to this.

I feel a gazillion whirling things. Blinding rage at being played for a fool. Eviscerating, debilitating sorrow at the shame others must have felt that led to the choice to lie. Sadness at unspeakable and completely needless loss. Bewilderment at being judged a poor risk -- else why keep this so carefully buried? Am I really likely to hurl back razor blades upon revelations of vulnerability? Am I giving off some indication that I'll morph into some mythical howling monster if my understanding of things is challenged? I guess I keep coming back to an odd, imperfect compassion -- as wretched as I've felt over this, how horrible would it be to be the persons keeping a secret they believe will destroy them and everything around them if it gets out? How much must those people have suffered in doing so?

And that part breaks me. I cannot begin to understand the amount of suffering already borne over this. I know only my own, parts of others, and can guess at that of the extended circle(s). It defies perception. That part, the suffering part, is pure, distilled evil. Perhaps that thought brings me full circle, to this. It's the only thing I've got any say in -- a renewed commitment to end the suffering, to not engage in storms created by anyone, anywhere, to lay it down, over and over again, until the motion of it becomes so fluid that I don't even notice myself doing so.

Oy vey. Deep breath. Here we go, then.

(Please God, let it be...)

Sunday, August 16, 2009

Opportunities for personal growth

Yuck. I learned something tonight that is merely a confirmation of things I'd long suspected. Here are some of the existential questions that formed immediately in my head.

Do we actually "deserve" anything? Is it true, for example, that a person can actually "deserve better than ______"? I'm beginning to think that no one "deserves" anything. Respect for each other as humans may be sort of the last remaining arguable point. Weird.

How does one focus when one instead would like to behave with shocking anger toward certain persons? I'm becoming accustomed to the feeling of having my outer layers peeled off, tired of it as I may be, so I'm sure I'll be fine, but really -- what is the process of focusing oneself while under duress?

And how about lying to cover something up, whether by omission or commission? Is a lie really worse than the actual thing? For me it totally is, for too many reasons to go into. In fact, it's all about the lie. Yes indeed it is. Does a person being scared of the consequences if they do not lie mitigate it at all? Usually. I think in this case it would have.

How about ego? Does the fact that things reflect on us steer us toward a less reasonable response? Yes. It does for me. Perhaps this is why I would cut oodles of slack for someone who was afraid of excoriation if the truth emerged -- I don't like being made a fool of and it horrifies me to think I may have at any time, under any circumstances, contributed to someone else feeling that, so compassion seems in order when thinking about forgiveness, be it for lying or whatever.

Is it true that people can repair literally any relationship thing, so long as they choose to? I think it is true. I used to believe this without a flicker of doubt anywhere on the horizon. Speaking for myself, I'd say that part of my ability to do so would depend on the amount of kindness any other person(s) involved were willing to extend. Hostile folk are not fun to work with and tend to be impossible to please. They're often caught up in justifying something. If you're busy justifying something, humility and dedication don't really have a place in the process.

It's times like this that I fantasize about having the kids grown and settled, successfully educated, happy, gainfully employed. In this fantasy I have a current passport, a kick butt backpack, and a nice toothbrush. Maybe a good camera. Khakis and boots? Yes. And good snorkel gear, a water purification system, maybe a satellite phone -- in case of grandchildren. I think that will cover it. I'll grow my hair to my ankles or shave my head -- for ease of travel. I'll have a cheap retirement. Far, far, far away -- maybe riding freighters around French Polynesia. Hey -- maybe by then space travel will be an option. I can go along and clean bathrooms to pay my fare!

It's always good to have a back-up plan.

Friday, August 14, 2009

One down, one to go

The first week of fine arts academy is over.

We are exhausted, but thrilled with the cool stuff that's happened so far. The bigger kids helped shepherd through a couple dozen children from a local Boys and Girls club. They all did choir (including a very cool rap piece), and then guitar, percussion, and art. It was a mad sprint, with the kids arriving every day by bus -- public transportation being not especially timely, meaning that each class was a juggling exercise. But we had an artist come in and do a brief demonstration -- he'll be back for more next week.

One of the leaders commented to me when they arrived that they never get decent art supplies. Score! We're delivering sketch books, pencils, and newsprint pads along with their matted work and other completed pieces late this next week (they needed time to dry before transport).

What an incredible opportunity to have been involved in this, a volunteer effort funded by the people who put together the organization that makes the yearly Christmas outreach possible -- His Kids.

I need to say a huge public thank-you to all the people who have helped to make this possible -- friends and family for the home and Q parts (including grandma rearranging her work schedule to be here), and all the wonderful people who just kept popping in and asking how they could be of help. Are there lovelier words in the English language than "What can I do?" Maaaybe. Right now, those get top billing.

Next week will be longer days, more involved classes, more paint and paper and water and mats and mess and literally running from one thing to the next, taking three flights of stairs, three steps at a time. But the backdrop is done, and the four banners hung and waiting only for the collage additions from the next classes, the materials are all purchased and organized and ready, locked up safe in the pastor's study.

I don't know who's more excited, me or the kids, but it's hard to imagine being more excited than me right now. We get to sketch in a cathedral this week. Swoon.

Night, now. Gotta sleep fast -- I have more pieces to hang before services start in the morning.


Thursday, August 13, 2009


Too funny -- and maybe a little too close to home for those of us whose fingers are still healing from that last buckling in experience?

Saturday, August 08, 2009


"And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil."

Sarah Palin, posting on Facebook

We have some things in common. She's mom to five, the youngest both a sweet surprise and developmentally disabled. I looked forward to hearing more from her, thinking that like any parent finding themselves in such an unfamiliar role, she'd take a little time to find her feet, but would have her own unique experience to share as baby Trig grew and their family learned to navigate the new normal.

I ordinarily stay leagues away from discussing politics, here or anywhere else. The fallout tends to be extreme. We attach easily to our political beliefs, imbuing candidates with characteristics they don't possess, good or evil, and somehow arrive at conclusions that are not always reasonable, but are almost always intense and strongly held. I'm unwilling to sacrifice friendships for ideology, especially when it's impossible to fully grasp another person's experience and appreciate what leads him or her to form a particular opinion, especially when any moral implications of a particular position seem murky.

But this, now, is not murky for me.

Ms. Palin does not seem to understand what she is talking about.

I do not wish to discuss the bigger picture of healthcare reform, except to say this: I am speaking from personal experience -- as mom to a kid with significant health issues, now former wife to med student/MD, relative to primary care providers, friend of specialists and their families. The system now is so broken that primary care physicians, physician assistants, nurse practitioners, and etc. spend a great deal of their precious time simply handling administrative baloney in order to be paid (and not especially well) for their work. This means their field isn't so attractive to new grads, which means your odds in finding a great primary care person drop every year. You may have discovered this for yourself. Wait times for specialists are also long and growing. We do not currently experience a panacea in this America we love. There is something better, something probably not yet named, which will be brought about only by earnest discussion between thoughtful people who demonstrate a willingness to ask questions, wait for the answers, ask follow-up questions, wait for those answers, push for their families' best interests and those of the nation (not necessarily opposing interests), preferably by using words which show that they've read and want to understand something that looks nothing like shrieking hyperbole. Something which is driven by things bigger than fear. Moving on...

The America I know and love already rations care.

Q would benefit from a dozen or more hours of therapies every week. He is a sweet, bright, cheerful, hardworking little punkin, in a non-verbal, uncooperative body. He currently spends one hour in Speech, one hour in OT, and two hours in PT every week. This last is only because we have a super PT who is driven by his faith to help whomever he can, convenient or no, and because I keep pushing, asking for extra hours whenever they're available. Because I'm pushing, Q gets an extra hour of Speech each week for the month of August. The wait lists for those trying to get into therapies for the first time or to restart treatment are months long, sometimes over a year. Medicaid (SSI) reimburses at a rate much lower than private insurance. Private insurance often allows a max of twelve therapy sessions per discipline, per year, even for kids with permanent issues.

Q's neurologist redirected us at NICU from the Medicaid chute (to one of the local children's hospitals) to his other office, specifically so he could spend more time with Q per visit. He still receives only the Medicaid reimbursement for a tiny time slot, but spent 55 minutes with Q and me at the last appointment. This is his Modus Operandi. Imagine then the wrangling he does with that hospital that he's billing through for having spent such a ridiculous amount of time with one Medicaid patient. Imagine then what that takes away from all the other emergency phone calls he takes from parents of children in Status Epilepticus. Imagine how your private insurance in effect pays for my kid's time. Well, after his office staff finishes arguing about whether or not they get paid at all.

But I digress.

The only sentences from Ms. Palin's argument with which I agree are these: "Such a system is downright evil." You bet it is. It is here, already. And there's no question that we're all positioned to affect something about the outcome of the current discussion. But nowhere on any table is rationing as she states it.

And this: "We must step up and engage in this most crucial debate." You bet. I so viscerally hope that by this she means that she's committing to choosing her words carefully, taking seriously her new position on the national stage, understanding that she can incite riot or encourage thoughtful discourse.

Perhaps the thing which most upsets me about this is that she has a unique voice here, being the very public parent to a child with Special Needs. She has a few things upon which to decide. Does she want her kids in or out of the spotlight? Will she be willing to put Trig there when she's unwilling to insert the others into a similar position? Is this hypocrisy? Is she interested in seeking quality care for her kids and being a voice for others? Is family privacy more important? Are the words she's choosing to use towards others being received by them the same way she and her family received damaging words during and following the campaign? Will she be willing to reassess her positions on everything, in order to develop her own, thorough, personal understanding of the new issues in her family?

I do not necessarily believe that gaining a kidlet with SN changes everything about who you are. I think it's rather like getting a new pair of glasses -- it merely reveals what was already there. In this case, that includes crossroads that one might never face otherwise. As a SN parent, will you cower when someone looks askance at your child? Will you deal with your situation and the people closest to you with affection and humor or with defensiveness and frustration? Those emotions and responses are ever present, always available for the choosing. But it confounds people when we complete a Costco run smiling, even when stuff spills or Q has puked on his spit rag. Sometimes I leave stores with tears barely bitten back, but mostly it's because of kindnesses, even if misdirected. Screaming back at someone who stares a little too long, who comments behind a hand, whatever, does nothing to change the world. It does not make my children braver, or kinder, or more resilient. I can snark with the best of them (ask around), but it gains me nothing, and my kids and the world even less.

This is the part that catches my attention because it is where I dwell, and a thing to be wrestled with. Speaking not just about Sarah... If you believe yourself to be a whole person, intact and uniquely created, act. it. out. You are secure in the knowledge that your Creator is in charge and that nothing in this world can erase that? Then there remains nothing in the world that can hurt you. No president, no weapon, no person. Come quietly, showcasing the intelligence he granted you, from a position of strength beyond measure, and rock the place like it's never been rocked before. Stand. The river moves, but it does not move you. Reflect His mercy, grace, kindness, and willingness to sit down even with Pharisees. Even with prostitutes, drug dealers, murderers. Even with Congress. Call upon him for knowledge and patience and humility when approaching your enemies. Bring the magnificent brain he created just for you and use it til it hurts from stretching to understand as he would. It is difficult but useful beyond human comprehension to be circumspect without being a wimp. You claim this as yours? Then claim it moment by moment, pray and meditate without ceasing, make yourself new in his image as he calls you to, refreshing yourself from the constant wellspring that is his healing.

I believe that each of us will be led differently, according to our own path and his plan for us. This means that you may well disagree thoroughly with me. I'm good with that. But whomever you are, do not speak, in a manner which seems to me to be uninformed at best, about something with which you have little experience so far. Do not use your position, intentionally or by default, to enrage people with words that are demonstrably false. It is wrong to do so.

That's all I've got. I hope some of it makes sense. I may have to spend another post footnoting addendums (addenda?) and explanations, but Life is calling.

ETA: (Told ya.) "If you can learn a simple trick, Scout, you’ll get along a lot better with all kinds of folks. You never really understand a person until you consider things from his point of view . . . until you climb into his skin and walk around in it." --Atticus Finch, To Kill a Mockingbird. (hat tip to Pam for the timely article...)

I wish Ms. Palin and her sweet babies well. Her path is not an easy one.

Thursday, August 06, 2009

Good reading

"I’m apparently one of the few remaining people on the face of the earth who thinks emotional truth is not the same as actual truth and not even within shouting distance of fact. If we all define our own truth based on what “feels” accurate then we really are living in a postmodern world where, as Brad Holland put it:

'Postmodernists believe that truth is myth, and myth, truth. This equation has its roots in pop psychology. The same people also believe that emotions are a form of reality. There used to be another name for this state of mind. It used to be called psychosis.' "


Go. Read. Think.

Tuesday, August 04, 2009

A toast

The kind of certainty of self-worth and presence of mind that this woman demonstrated when the chips were down is amazing. I hope to cultivate exactly that level-headedness, centered-ness, whatever that thing is. It is a huge and worthy thing to strive toward. If it applied to marriage only, well, whatever. That ship sailed. For me.

But I suspect that it applies to everything. I suspect that I won't be having a boring life, whatever else one might call it (Q's swallow study has been un/re/not scheduled again). I'm betting that I'll have plenty of opportunity to use those skills, that steady, kind mindset, with my kids, with whatever professional endeavors might come up, with friends. I suppose that this is part of my wondering about that little voice, calling me to change, to growth, to "becoming."

Or how about being able to receive that kind of grace, humbly, with humor, speaking of it and answering the tough questions when the dark clouds have passed? Should she have let him go because he "didn't want her"? Some would give a resounding yes, not even beginning to grasp what she had to pull up from the earth by it's very roots, to have answered his demands the way she did. Perhaps that works for those people...

I wonder if one must move to Montana and/or wrangle 1500 lb. horses in order to be that person?

To a genuine, grown up woman. May we each be one, someday.

(What a thing that would be, huh? All kinds of world-class nonsense would fall, were we leading the daily charge with Love. No small l's. Only Love.)

Hat tip to Abbey for the article link.