Rest

No more pain, no more counting up the tumors, no more giggles and working on his tennis skills. Little Benjamin is gone.

Dear Lord...

Ho Ho Ho

I'm just waiting for Q's meds to kick in before heading off to bed, thought I'd drop a few lines here.

We saw Santa last night. It's been a yearly occurrence since G was 5 mos old. I almost quit after life blew up, but decided that the (Herculean) effort was necessary. The kids were losing so much that was familiar, I didn't want them to look back and see that that year, along with losing their family, every little thing went off the rails.

So last year, when picking Q up off Santa's lap, Santa, tearing up, commented on how lovely a family we were, how clearly and greatly Q was loved. I smiled and said thank you and even managed to walk away instead of falling to the ground sobbing, as it sometimes feels like I'm about to when we get compliments on our lovely family. (Call me crazy, but the irony of a compliment on the sweetness of our obviously incomplete group sometimes seems nearly too much to overcome. It feels a little too much like an O. Henry story gone wrong. Shudder.)

When I announced we were going, G announced that he didn't want to do it this year, crying foul because I'd told him last year that he wouldn't have to do this again. It's true. I did. Then E got out Grandma's Santa pics and well, I changed my mind. I told him so, he wanted to argue. I called him over to where I was feeding Q and told him to remember that this isn't about him. Some things aren't. He giggled (he still does, sometimes). I said, "I have just one question for you. What are you going to say when Q demands to know why there aren't any more Santa pictures after 2007?" G said not a word, but returned a few minutes later wearing clean, less than usually rumpled clothes (he's that age and I'm not dying on that hill). I told all the big kids that they could wear whatever they wanted, but it had to be clean and not clashing (this part turns out to be open to interpretation). So they weren't dressed up (not dying on that hill either). I wanted happy faces.

Over the years, one comes to expect the unexpected in such undertakings. We've had cranky elves, way too happy elves, lines that lasted more than two hours, and no queue at all. Last night's line wasn't too bad. About half an hour of chatting, window shopping, and a change of Q's drooled upon sweater we were ready to roll. Santa was great, except for the minor numbness he seemed to be experiencing in his left arm. I'm still wondering if he went on to end his evening with a heart attack. But I digress.

Q couldn't take his eyes off Santa. In 2006, we solved that problem by having everyone look at Santa and all his rosy red and whiteness. This year, though, the photo people were determined, and Santa cracked jokes while they worked. We ended up with a decent shot of Q looking off to the side, at me. Snort. Santa did the requisite asking after Christmas wishes and we humored him. (S had said she didn't want to go because he was just a fake Santa and no one's seen the real Santa in several hundred years -- since he threw dowries down chimneys. Her older sibs talked her into compliance. Snort.)

We thanked the nice man and headed off to look at our nice pictures, Q draped over my arm. The lady came out with the package I'd ordered and showed me the sweet faces. She handed it to me. As I was turning to ask the kids to hand me my purse from Q's chair, she said, so quietly, "And it's on us." I was stunned. I'd seen the elves watching us while we were in line and wondered about what I thought might have been the pursing of their little candy cane-stained mouths. I may have actually said to her, "No way." I know I managed to whisper a shocked but emphatic thank you and turn around before beginning to sniffle. I'm pretty sure the kids noticed me wiping tears, but they didn't say anything.

What does one say? Sometimes, when coming from a preschool evaluation (more on that later), when tired beyond words, when working to repress being heartsick still at the implications of certain realities, it's just an awesome thing to have a little bit of a Christmas miracle with the mall Santa.

"Kiss those babies." --Dy

"And the one you made 'em with." --me

G'night.

Happy Wednesday!

Well. About court. The end of January we go back, then. Don't know what to say about that.

Got the kids in to the pediatrician late Monday and got all of 'em listened to. G and Q have antibiotics. Hallelujah. Both are having nebs. The other night was very bad for sleep, but neither have looked like they're desaturating, so there's that anyway. I called Tuesday afternoon when K was coughing more and saying that it hurt now. She started her round before bed. E was coughing more as she headed for bed. So there's another phone call for the morning.

Now. About the sleep I'm ready to have. I somehow need to help the punkinheads to stay in their beds. I love to snuggle their soft and sweet little selves up, but actual sleep becomes somewhat difficult (for me) when there's no room in the bed for my arms. Or legs. Or head. Interesting that they sleep really well when piled up like puppies. I find myself waking constantly to make sure they all have adequate ventilation.

Between their upcoming visit and not feeling great, they're not resting very easily. I'm sure they'll have fun with dad, as always, but there's always a bit of anxiety in transitions, isn't there?

You know, as I was on my way home this evening, I was trying to remember the whirlwind of the last several days and found I couldn't place all the details in their proper spots. Perhaps it's time to place an IV for more direct delivery of caffeine.

Q got his new glasses today, S had her second round of fillings (we're cursed with "sticky plaque" here), G had OT, we had an easier time with our Spanish program (Yay! Thanks, M. And where's my IT guy? Hellooooo?), and all are sleeping hard, adequately medicated, and I'm heading off too. The light of day will bring piano and violin lessons, more carschooling while they rotate in and out of said lessons, and Q's SpEd eval. Among other things.

Sweet dreams.

XO

PS -- Barbara. I laughed out loud at your comment. I used to refer to mine, flagrantly bragging, as my "Studly MD Hubby." You got it, flaunt it. ;o)

Head-banging fun

$*#&.

It's Pulmicort season. Q's front and center in the celebrations. There goes my head on the keyboard again. Bam, bam, bam. I feel like my eyeballs are being scooped out. Wah. The upside of this is that it could provide reason to have him classified as medically fragile and thereby eligible for pre-school services coming from the school district to the house. I don't know yet if that's good or not.

That pretty much exhausts that topic. So on to other things, then.

Have you noticed how nice it is to be you? I've heard lately from just about everyone (female) I know that things are good where they are, at least in terms of self-acceptance and erm, lustiness. Before I embarrass myself entirely (blushing), let's just acknowledge that this age, stage, whatever it is, is not what most of us expected and we're pretty happy about, um, certain parts of that. Other parts, perhaps not so much, but our physical selves? It's good. Gentlemen? If you're out there? And looking? Skip over the twenty-somethings (unless you're married to one) and go court a middler-aged female person (especially if she's your wife -- smack -- what're you doing here anyway?). She's got life pretty well together by now, is still full of surprises, and it only gets better from here. Or so I'm told. Maybe it's the whole long-term monogamy thing that has the collective us so happy... Hmm. There's a thought. In which case, I don't know what to tell you. Perhaps it explains itself.

Back to the eyeballs being scooped out. Big day tomorrow and we've been running pretty hard all week, and sick at that. I'm heading for bed, or at least a more horizontal position, since the Q is out (thank God).

Hope your weekend is lovely and includes (yawn) lots of R and R. If your "R" happens to be past PG-13? Yay for you. Don't tell me about it anymore, though, m'kay? I'm maxed out on those conversations for awhile.

XO

Thankfulness

Knowing that there's decent chocolate somewhere in the house. Just in case.

A quiet house at the end of the day or first thing in the morning.

A really, very, exceptionally good day with the kidlets. Most days are good, but some just shine.

Facebook Flair. ("There's a fine line between genius and insanity. I have erased that line and replaced it with a small trout.")

Good wishes from meaningful figures in my life.

Little guy, cooing and chortling to his sisters.

Watching the lap swimmers while I walk the aforementioned kiddo around and around in the pool, hugging the lane markers to avoid splashes from the other families. I fantasize a little, my cells recalling the slip of water over belly and thighs, the feel of stroke, stroke, stroke, breathe, and the surge of delight in a well-executed dive.

Prayer, contemplation, meditation. I don't often hold still for these activities, especially since doing so often results in my falling asleep, but I absolutely treasure the space in my head that's reserved for this type of thinking and/or activity. I use it all day, every day in big and little increments.

A really good walk in sunny, apple-crunchy crisp air, with good conversation and great scenery.

My parents, married forty-one years today, their forbearance in letting us be here and other myriad help they offer. Having a warm place to be is awesome, and this place is so much more than that. (My mom was here with the kids, one of three adults who stepped in while I was off to court, and she has since had just the sweetest and most complimentary things to say about the stuff I do here daily. It makes me blush.)

Lunges and squats. I know this puts me somewhere in the realm of the demented, but wait: the doing of particular exercises is the only thing staving off further intervention with this silly knee. I slipped on a small invisible puddle while passing through a hospital cafeteria last week. I splatted unceremoniously and was sore, but nothing was dislocated (a minor miracle, given my history) and I'm crediting my own persistence in the pursuit of muscle-making, thank you very much. You see? Lunges and squats.

Good food. Orange-scented, nutmeg and vanilla, maple syrup-topped French toast. A salad made with pears and apples and bleu cheese with cardamom, black pepper, ginger, and chili powder-spiced candied walnuts. Roasted carrots and parsnips, sauteed rainbow chard with a little garlic. And a tortellini salad with garbanzos, capers, fresh basil, little rings of multi-colored baby sweet peppers and crumbled feta. Yup. Lots of comfort in the sensuality of awesome food -- making, eating, cleaning up and teaching the next generation. Love it.

Last but far from least, there are moments in which I sort of watch myself and my punkins interact, kind of removed from the situation, thinking about how we'll remember that frame caught in time. The eldest becomes this funny, self-possessed young man; the second-born a treasure of anticipating, striving responsibility; the middlest ever more creative and beguiling. Number four grows her vocabulary and conceptualization almost hourly, always popping out the very funniest and most profound things one is likely to hear on any given day; and Q. Whipping his head around when he hears the word "pool" or to find the sound of running water. And, oh, the fatness of those cheeks...

Life is rich indeed.

Speaking of court...

I suppose we made some progress. Things are certainly nearer being once and for all done. I'm sure there will be a wedding soon. Sometime after December 8 (the next and probably last court date), to be more precise.

I met with my attorney before heading to court and she asked me if I was nervous. I told her that no, I wasn't. I'd thought about all of this and decided some time back that since I've no "story" to keep straight, only details to remember, and I've based (or tried to) everything I've said and done on what I've always believed (that kids always come first, that one should work at being nice no matter what, that Truth ultimately takes the day), that there simply wasn't anything to be worried about.

She said, "You know, I can't tell you how many times we've worked so hard, thrown ourselves into arguing every detail, just done all that we could think of to do in order to achieve what seemed to be the only reasonable outcome, only to have it fall through for no apparent reason. Only later, sometimes much later, have we seen that it worked out just the way it was supposed to all along. The right thing happened, we just couldn't see it at the time."

I nodded. "I'm good with that."

She said, "I am too."

I'm glad to have this particular attorney.

Of course, that didn't prevent the near panic attack that happened when they walked into the room. I held my breath until my heartbeat didn't hurt anymore, figuring that either I'd wake up to EMTs standing over me (oh, wouldn't that have been fun) or the silly organ would get back to it's business and leave me alone. What happened? The latter, of course. Who needs that kind of drama? Besides, I haven't had a panic attack since back in the first week after I learned what was about to happen to my family. Not a place I want to go again. Moving right along...

I don't have much to say about the actual proceedings. It was surreal. And I think I may just have to get comfortable with feeling like my limbs are being removed with a dull and rusty cheese grater, since the sensation doesn't seem to be subsiding much. Or at all. It might be marginally better than panic attacks, though. I'd have to think about that and get back to you if you were to want a definitive answer.

I think the judge is a remarkable guy, level-headed, whole-heartedly on the side of the children, focused on upholding the law as he's been entrusted to, as one would have to be under the circumstances. I observed some of his other cases late in the morning and again in the early afternoon. I don't know how a person would maintain objective speech in some of those cases. Really.

A mom was asking for counseling help with her 11 year old daughter, a child she had just allowed to go live with the bio-dad (the split was recent) for about two weeks just prior to their court date. When asked why, she said that she and her daughter had difficulties, that the child pushed constantly to get her way, that it was easier not to have to fight with her and that it seemed like her dad's place might be a good breather for them all. She admitted, when pressed, that a kid saying, "I wanna go live with dad" is not a threat. (It was her best example of "threats made.") The judge, at his most adamant during my observation, leaned a little forward and said, "She's eleven. You have no control over your eleven year old? What will you do when she's sixteen? By allowing her to do this, you have just confirmed that whenever she wants to push you like this, it will work. She will use this on you forever. [pause] This is what we would call bad parenting. The state does not look kindly upon the splitting up of siblings." And he ordered the child back with her mother and brother, to receive counseling, and the parents to work more on this.

I wondered if the mom, with her very shiny, very long, black as midnight hair had finished high school. If she understood the difference between a preteen upset with the enormity of emotion in the situation vs. the amount of control the child feels she has over the emotion, the situation, or herself. I wondered if the mom ever had anyone help her process those feelings that were bigger than she was as a kid, or now, when she's the grown-up in charge.

The dad was quiet. I wondered if he, with his forcibly squared and constantly re-squared shoulders, understood that his daughter needed to stay with her mom, in no small part to help her know viscerally that one does not run away when faced with feelings of chaos and frustration, a skill her own parents weren't modeling for her. I wondered if he knew this but couldn't follow through, just as he (or they or she) couldn't (or wouldn't) follow through with keeping that child's world safe with mom and dad under one roof. I wondered if he knew this but did what he felt he could do: take the child and allow her some breathing room, even as he may have grasped clearly that it wasn't a permanent thing. I wondered what he would tell her about the day in court and why she had to go back. It's certainly not unusual or wrong for daughters to want their daddies or for dads to want their baby girls. Would he tell her that her mom was making them all do this? Would he tell her that it was the (big, mean) judge? Would he say that this was the right thing for now, that he loves her and wants her more than he can ever put into words, but that her mom has been the constant in her life? That it's important to stay put and work through the hard things because she has people who love her more than life and will do good things for and with her and always push for the best for her, even if it's hard and that one day it might be his turn to be on her bad side but how she feels about him has nothing to do with how he feels about her and that it's the same for her mom? Would he tell her that he'll be there for her whenever she needs him? That she can always talk to him about anything and that he hopes she'll talk to her mom too? Would he offer to help her talk to her mom? Would he?

I see them still, standing at that table, both holding a shared and scared breath. I want to stand behind them and whisper the thing they need to hear. The thing that will help them to be whole, to be unafraid, and to be the heroes their kids need them to be.

The (ex)couple who took turns making accusations of certain acts taking place in front of the kids or rock-throwing? That's pretty much fear too. There wasn't much leveled that day that seemed to have any basis in reality. Accusations of failure, inadequacy, most cases were about one parent being terrified that something was slipping inexorably from their grasp(s) and could never be replaced. The depth of emotion was black and heavy and I don't know how the people who work there, including bailiffs who act as combination security detail and social workers, manage to show up every day and not go, as Martha Beck says, "totally barking postal." And again, I am so sorry that anyone would ever, for any reason, need them.

Would that there were some way to snap one's fingers and fix the tremendous amount of pain in that place. If for no other reason than to stop the ripples it slams the whole of society with. Couldn't we all use something more hopeful than that?

Food for Thought

Any time you spend away from your family MUST be spent in the company of those who will encourage you as a mother and wife. You will never gain anything but resentment from the council of those who encourage you to seek self. Learn to enjoy being home with your family. Learn to live sacrificially. Learn contentment in serving others. Learn to be happy being you--right where God placed you.
--Raising Arrows blog
Read more here.

Further comments from the author:
I am also not saying I don't think a mother should go somewhere by herself. What I am saying is that this alone time should not be a frantic NEED. We should not spend our days trying to get away from the children. We should find ways to make our time w/ our children and husband satisfying, so that when opportunities arise to go for coffee w/ a friend or to a baby shower or some such thing, we don't see it as something we HAVE to have in order to continue to function. We all know the disappointment of thinking we HAVE to do something and then not being able to. Wouldn't it be nice to see those "outside" things as something extra and not something we DESERVE?

I think sort of the same as the above, with a smidge more fleshing out: If parents don't already have an identity and an established ability to find ways to "get needs met" concurrently with being mom/dad, wife/husband, daughter/son, friend, doesn't this say something about our own maturity? Having SO been there, done that (with toddlers), I can say that for me it absolutely did. If I'm acting out or cranky because I'm not getting what I want or need, how can I hold myself up as an example of anything to my kids? If I can't effect it myself -- and as an adult that is my responsibility -- how dare I take energy away from my family by focusing on stuff that has no relevance to our daily lives? Life can be full of frustrations, yes, but handling disappointment well, even with humor and graciousness, provides our children a viaduct which allows them to circumvent most of the tantrums and longing we've experienced throughout our lives when we've bought into the "grass is greener" myth. I'd contend that such perpetual disappointment is absolutely a lack of maturity. Or at least, that's exactly how I experienced it. I may well not be done with it, but these days I spend zero time thinking I deserve something "better" or "different." Well. I long for that intact nuclear family thing, but that's a whole other topic.

So here's my bottom line on the topic: Dive in where you are. Apply the best of what you've got to those closest to you. Be the sweetest, kindest, funniest, lustiest, organiziest human you can be right now.

Having been in Family Court recently I can tell you this: If every single one of those families I watched interrupt their days of work, school, family endeavors, to come argue the (perceived) deficits of their (ex)spouse and legitimize their own efforts above all else, if those people were putting that same amount of actual effort, measured in Joules or calories expended, you pick, into lifting up the other parent, into acknowledging and honoring the good stuff and deserving the respect they're demanding instead of being afraid all. the. time. that something is about to be snatched from them? Family Court would be needed only for extreme cases and Guardianships or Special Needs Trusts. Which would be fine with me. With most of us, really. The planet at large would certainly experience an immediate shift.

That persistent fear thing rules us more frequently than we admit. It ought not. I believe that if you focus on fear you will get more of it. Eventually, it will be all you're able to see or experience. If you're waiting for someone to cut you off in traffic or otherwise offend you, you won't need to wait long -- as nature abhors a vacuum, you'll see that space filled with whatever it is you require to confirm your worldview that people are crumbs, that they're all out to get you, that you're not loved or cherished as you should be even if there is overwhelming objective evidence to the contrary. Adopting an "attitude of gratitude" seems to be the inverse of the above.

Unless your relationship meets certain criteria (violence, etc.) the first place you must look when hashing out difficulties is to yourself. Have you forgiven seventy times seven? Times seven? Have you done literally every single thing you could? No? (Shocking, what with you being human and all.) Then do it. You are a great big person with resources and a magnificent brain. Drop the hubris like it's on fire and get counseling, read, find meds, a mentor, or go for a good, head-clearing hike.

But do not blow the people who love you to heck, through heck, and back again by being a jerk. On any level. It doesn't have to be infidelity to wreak havoc -- though that certainly produces an unequaled mushroom cloud. Persistent pettiness, jealousy, or complaining will do just as well to undermine your beloveds. Choose to be present, to be honest and earnest and if you can't, GET HELP.

Or you might instead just spend a day in the halls of divorce court, a place which could just as easily be called The House of Dread. The people who show up there are scared, worried, sick, often lying (even "getting their stories straight" at a shocking decibel level right outside the doors of the courtroom), and rarely capable of rising above much of anything at that moment. If they were, they wouldn't be there. Harsh? Yes. Accurate? Afraid so. Putting the people who love you first means that you don't allow addiction or impulse to drive you. (And if you're struggling, I'll say it again until I'm blue, you must get help.) Instead you make your choices based on the long-term, what will best benefit the sweet little souls who depend upon you. And you make sure that you've created a balance in all this, so that they know you respect and value yourself enough to persist in the challenges of life and get what you want and need, while you're loving them with everything you are. Herein lie many of the quietest, bravest acts ever undertaken.

When your day is done, think about whether or not your family deserves every drop of effort you've got. I can assure you that they do. As Ghandi said: Be the change you wish to see in the world.

You have no time to waste.

Quote

I will not die an unlived life.
I will not live in fear
of falling or catching fire.
I choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
more accessible,
to loosen my heart
until it becomes a wing,
a torch, a promise.
I choose to risk my significance,
to live so that which came to me as seed
goes to the next as blossom,
and that which came to me as blossom,
goes on as fruit.
--Dawna Markova

Hey

I'm waiting for the kids (chortle). That never happens -- I'm usually running around getting stuff together and fixing the next meal for later and drawing up meds... I'll get back to that in a minute.

How are you? Are things alright where you live? Papers getting written? Toilets getting scrubbed? Paychecks comin' in? I'm humming "It is well..."

Q is "getting" the whole walking thing more and more. We've been swimming once or twice a week in addition to his other therapies and I think the boy is gaining muscle in his legs. Good muscle means more stamina, more stamina means more muscle built, and longer periods on his feet means that muscle memory has more time to become embedded so that next time he wants to go somewhere the organizing part of getting to an upright position isn't so tough, the remembering that the feet have to alternate is easier and he gets farther more quickly. Which is so rewarding that he wants to do more, more, more! I've been talking with Q's PT about a walker because the boy would like to do this for hours out of the day now and my back can't take it. His PT is concerned that we get into a walker at just the right time so that we don't cause major structural issues later. He admits to being conservative in this. I'm fine with being careful, but antsy because Q is and my back, as I mentioned, is complaining. Of course, having the walker is only part of the story -- did you happen to see Extreme Makeover: Home Edition last night? The kids watched. The house they knocked down for a four year old in a walker had the same issues we do here. The new house was ADA friendly throughout, including a specialized playroom, plenty of space to maneuver, a "wet room" as a bathroom, and an elevator. Wow.

We raked up every last giant maple leaf yesterday. Or rather, there was one still hanging in the tree. Since it looked like it had become wedged and would need a stiff gale -- or spring -- to bring it down, we're not going to worry too much about it. The leaves, beginning their new lives as dirt, all went to live on the garden, where we'd had the chickens penned for about the last year. I say "had" because the last one disappeared a couple of weeks ago, leaving only a small pile of feathers. We have a little envelope with $30in it from the neighbor lady whose untethered bird dog dragged one home in September. We've been debating whether or not to try again with a few chicks in the spring, to purchase two or three layers, or to just let it go. The neighborhood is full of untethered canines, large and small, and while there are laws against it, it's an unincorporated area and no one's too anxious to enforce leash niceties. Those Americanas are excellent layers, though. And the eggs were awesome. Maybe two or three would be just right in the chicken tractor. We'll see.

Overheard lately:
G, exiting the van and exclaiming to his sisters in a stage whisper (so as not to frighten the poor beast?), "Oh! Girls! Look quick! Diplopoda!!!"
E, stepping carefully, princess affect intact, carrying a paper bag complete with tea towel out to the playhouse in the dark, "Come, girls, let's have some supper."
K, being her usual articulate self and explaining her frustration, "You don't understand. When my sisters talk to me, they just overwhelm me."
S, using paper towels as diapers on her Baby Alive, "Mom? Why don't I have a real baby?"
Q, as we're doing bedtime stretches (not to be outdone by the bigger sibs), "Mmmmboobooboooooo..." (With his lips! Pursed and mobile!)

We've got another, this time probably the last, court date this week. May God have mercy on us all. There's so much to say and not much of it is useful, so I'll just be still. Prayers are very much appreciated, as always.

And in closing (the kids are almost ready to go), here are some excerpts from an email my dad sent last week, late on election night, from the remote site he's been working at for the last weeks, off and on. Reprinted with his consent.
____________

Well, now the hard work can get started. If Obama is to fulfill his hope of bringing hope to the rest of the country, he’s going to have a lot of hard decisions to make. They won’t always succeed in pointing the country in the direction he envisioned, to say nothing of the direction all America needs to have in mind. But I am glad he brings a message of hope. Agree or disagree, he accomplished a lot for a guy who grew up in his grandmother’s house because his parents couldn’t, or wouldn’t, care for him as they should have. I hope to use his story in a positive way on my own grandkids. I cry a lot of silent tears every time I look at little Quinn. .....

But Quinn can take your heart for quite a ride. Even if he can’t say a word, he can laugh all to way to the bottom of his toes and the top of his little head. ...we were [on a paved trail] ... enjoying the last days of bare ground before the snows (supposed to get 10 inches there tonight), when he started looking at us all like we were not quite OK, his mommy said. She caught on that he was noticing everyone had hats on, so she sat down in front of him (he’s in a stroller with restraints so he can’t fall out or tip over) and pulled her hat off. He nearly split his face open laughing so hard.

You might learn more about his condition by looking up blogs on PMG (polymicrogyria), which is the brain condition he was born with. The corpus callosum (that thing that connects the right and left hemispheres of the brain) did not develop, and his motor planning and execution are painfully difficult. He loves to knock my glasses off my face, and I gladly let him, as it is one of a few things he can plan and execute on his own. The very first time, he laughed when they came off, and laughed harder when I put them back on. Then he repeated it, with great pleasure. A connection was made with another person. I’m glad it was me.

I’m too tired to work anymore, but I thought of you. I’m listening to Dvorak’s Symphony No. 9 From the New World. It truly expresses in musical terms much of the hope that America means to much of the world. It was one of Dad’s all-time favorite classical works. I can still hear him humming or singing the Spiritual “Down de Road” which tune was incorporated into the symphony. The composer took with him a vision of hope from his visit here from Russia around the end of the 1800’s and put his ideas to music. Now I find it fitting that such hope may once again find expression right here at home. May God help our president-elect to rein in the temptations to corruption that will surely assail him, just as they have everyone who preceded him in that office. It is only the hand of God that can protect from such temptations, and woe to those who fall in their trap. “Those who fail to learn from the lessons of history are condemned to repeat them.” And “Power corrupts, and absolute power corrupts absolutely.” Pray for him, and for his worthy opponent who showed grace in defeat. And for our current president. May he yet humble himself at the foot of the Cross, where God waits to give him healing and encouragement, if he will accept it. He started out with good intentions, it seemed. So did Jimmy Carter. And look how he made the best of a humbling experience as he went on to serve his country as best he could, regardless of what people think of his policies. Let’s pray for W that he may find the peace that only God can provide, while he still has time to learn. Doesn’t the Bible say that Pride goes before a fall? Arrogance, expressed in large and small ways, always leads to the same sad results. And for a nation to allow arrogance to determine national policy, the results are uniformly fatal once the tipping point has been reached. That’s why God so vigorously warned his people through the prophets that their arrogance was about to kill them, literally. And sadly, it did.
___________

Pax.

Heartbreak

As Senator McCain makes a gracious speech and Senator Obama prepares to appear in his new role, it strikes me that there are many families for whom the precious right we exercised today falls dead last in priority this evening, and rightfully so. This one, in particular, covets your prayers. May we bear up with and for them and all the families who unwillingly occupy the same horrible place. May we carry a little extra and cherish more dearly our civic rights and responsibilities while they cannot.

God be with you, Ben, and with your family. Our hearts are broken for you.

Edited to add -- Trying the link again: Caring Bridge, then enter website name "towne".

C'est la vie, again

Q didn't sleep much last night and as a result I'm sort of racketing around in my head. I should be much farther down the path of my day, but it's hard to be organized about much of anything when one can't spell or focus or speak in complete sentences. You think I jest? I'm pretty sure that the dental and therapy people we saw today could attest to my version of events -- it's all in the eyes, folks, the bloodshot eyes. Oy.

Anyhoo, the kids are bigger and more able to help and things move on. I'll get the math tests graded over the weekend which I'd hoped to get to last night, and generally things shall improve. I'm planning that the boy's stuffy head will disappear like magic (poof) and that everyone else will just decide that a change of scene requires enormous relaxation of attitudes and spirits. And by the end of the weekend, our little jaunt toward the mountains will have refreshed us all. Starting... now.

I've been enjoying the comments on the previous post. Comfort and it's friend Gratitude are so important. Q's physical therapist spoke examples today of a sugar squash with bleu cheese, or a portabello mushroom, grilled, with onions and garlic and more bleu cheese. Yum-a-licious. Keep 'em coming, folks. We'll spin this into a gathering of good stuff and before we know it, things will improve all over. Sometimes the words themselves are huge, you know?

The great lesson is that the sacred is in the ordinary, that it is to be found in ones daily life, ...in ones own backyard.
-- Abraham Maslow

Comfort

Guess why I'm up at this hour.

Yup. Little guy needed to burp and then was awake. After some patting and some off-gassing, he snuggled down in his chair and closed his eyes to ignore Thomas the Tank Engine. If I had tried to move him it would not have gone well, so I left him there and I think he's approaching the state of well and truly asleep now.

Let's talk, now and for a few days, about comfort. I've been thinking about what we do to self-soothe. As adults, thumb-sucking is out (for most of us) no matter how bad that 401K looks at any given moment. Booze is not a good choice -- it shrinks your brain and yes, I know it's a standard line but there's finally research to back it up. So what should we do about calming and comforting activities?

Well, there are the standard adult (ahem) activities. And then there are things we can choose to draw strength from, things that might under other circumstances be thought rather dull or too "usual" for real appreciation.

A few weeks ago I found in a box (more sorting) a favorite old silk nightie, the color of my eyes, a little, ordinary piece of cloth. But it's silk. And it has these little straps. And how often does one come across such a thing? It's sort of like finding money in a pocket -- only this is capital that represents happiness shared, something nice, a little space of decadence in an otherwise stridently spare time. I began wearing it to bed. I swear it has affected my dreams. Q mostly stays in his own bed on those nights, I don't know why (never look a gift horse...). I suspect the combination of something nice next to my skin and the quietness of the boy are what's letting me wake on those mornings feeling a smidge more buoyant, more like a grown-up who's about some thing of importance, and generally not at all like someone who checks her clothes for puke before leaving the house.

I thought about this as the market began it's cliff-diving regimen -- how such a small thing can soothe so nicely, if allowed. Then I wondered what else I might have in my power to elevate to such a position. The kids would benefit from feelings of the same -- they're not clueless about the stresses of the times, the fact that I breathe a little lighter as the gas prices fall, or count pennies in order to keep the ducks swimming, balls in the air, whatever metaphor you prefer.

Well, there's food. We're eating anyway. There's good stuff in the pantry -- which I reorganized and labeled and now it's so spiffy that we'll be the neighborhood center for disaster preparedness. But I digress. Since we have to do food to survive, one might as well make something a little bit more special, once in awhile at least, even if it's just soup. Homemade minestrone, for example. Or how about whipping up a lentil curry soup? What about tossing together slices of red bell peppers, yellow cherry tomatoes, a light dressing of balsamic vinegar, olive oil, Hawaiian Black sea salt, the bit of leftover feta and thinly sliced, sweet red onion? How about Delicata squash stuffed with amaranth (think polenta), pecans, shallots, and garlic? Mmm -- kale, shredded and seasoned, sauted til tender with a little smoky saltiness. Or is it salty smokiness? One might sprinkle Herbes de Provence on one's frozen pizza or butternut squash just after it comes out of the oven. There's always homemade chocolate pudding. What about just taking the time to slurp up a really great pear? Yum.

I guess the point is that even as we experience a slowing of the economy, we can take the time to really experience the simultaneous slowing of the family, the processes in which we all partake. Whether it's very good food, a formerly missing nightie, or evening schoolwork or instrument practice, we can glean a little soothing from right where we are. Having time for a little more interaction is a good thing -- especially if we take it just a little further and think how we might add to the soothing of the others in our everyday circle of influence.

Kinder words? Longer hugs? A full, goofy smile upon greeting them? Perhaps there's something you've been meaning to tell someone and you just haven't quite gotten around to it. Now's the time. Be the blessing.

I'm going to go see if I can yet convince the wee one to allow himself to be carried back to bed for a nice long sleep and try to bless my group with steel-cut oats with brown sugar and cream in the morning. (Add your ideas in the comment section below.)

XO

Onward

Links worth checking out:
Frontline. An interesting look at both candidates.
Snopes. Because, that's why.
Divided We Fail. A comparison of the candidates.

I'm not looking to get into any sort of debate, here or anywhere else. (wink) I do believe, however, that there's a shortage of real information as opposed to baloney. So get yourself all informed -- through a variety of sane and reliable resources, please -- and happy voting.

_________________________________________________

Re: court. We're back in on the twenty-second. I don't know what to say, really. There's technically nothing to tell about the previous date. The twenty-second looks to be what is perhaps the final date in the case as it stands.

Since we're here, let me just offer up some advice.

(Now approaching the three and a half year mark into the re-tooling of our family, I feel I can speak with some authority.)

Ahem.

A friend believes that sex is often the only thing that holds marriages together, through some of those darker times, and that if we were all to avail ourselves of the benefits of matrimony as we should be, we could jolly well allow it to carry us through to happier times. I think she's right. Spot on, as a matter of fact. And hey, since it seems that we all now have no actual money/assets/prospects and therefore no other way to entertain ourselves, go grab your honey's hand (or whatever) and find a room, already.

You can read the rest of this later. It's really not important enough to keep you from your mission. Trust me.
_________________________________________________

I've been having the strangest dreams lately. In fact, that's probably why I'm up tonight instead of having hit the proverbial hay as soon as Q went down. They've been getting so vivid as to be nearly unbearable. The first night, everything was threatened by some looming evil, plots were thick and it was a challenge to move quickly enough and keep our wits about us. The second night, I dreamed familiar dreams of family, intact, laughing, things fairly historically accurate, highlighted in the Technicolor of remembered bliss. The third, more familiar dreams of love and love lost, recurring nightmares which startled me awake even as I "knew" I had to get back to sleep for some hoped-for resolution. Last night it was back to us picnicking by a river, kids gamboling like little goats while all the grown-ups lolled and chatted, snuggling up into couples, followed with a fierce and breathless, then hilarious, game of tag going on between us all. But there was something dark lurking at the edges of the happy scene and I couldn't see it, no matter how quickly I turned. I had the oddest combination of total immersion in the joy of the moment -- family fun -- and horror at what was coming, though I couldn't quite figure out what that was.

Maybe tonight I'll read until I drop off so I don't have to linger over what will wake me this time...

_________________________________________________

Q is having an interesting time these days. The neuro appointment resulted in increases in meds (stop me if I've told you this already). The Clonazepam has gone up to a whole 0.5mg ODT at bedtime and the Trileptal will increase in another week, though only by 0.5ml, thank goodness. I've been a little (silently) freaked out about all this since his drop in tone which brought on the feeding issues and made him seem so vacant came on with the meds, or so it has seemed to me. So far, the Clonazepam increase has done just enough -- we've not had a night of less than five hours sleep since we hit that dose, almost three weeks ago. He's not startling himself awake even as he's dropping off, which is such a blessing as to seem an outright miracle. The Trileptal increase will be only because he's gained weight and the dose hadn't been increased in nearly a year. Wow. But here's the best part: if we get all the way into the spring without any apparent seizure activity, we're going to have another EEG and take a look at weaning off the Trileptal.

Holy cow. I mean, if he needs the meds, he'll have them. But to not need them? How cool would that be?

I said a few weeks ago at a support group meeting for parents of children with special needs that I love pharmaceutical companies. It rather horrified a mom (a homeschooler of seven, as it happens) who was sitting across from me, though she managed to keep a fairly straight face. It was only later that I learned that she "just doesn't give her kids anything." Well, let's just think of this as hyperbole getting away from me, shall we? The thing is that I don't, as a rule, do much in the way of meds. I'm more likely to use herbal or homeopathic options first, and often forget that a headache or muscle strain in myself might easily be helped by a dose of ibuprofen. However. When one doesn't sleep for more than a few hours a night because one is up with one's very cute, very sweet, yet somehow unable to sleep without Big Meds little guy? Well, under such circumstances one's philosophy might well suffer whiplash.

Therapies are going well. We've had some good progress in the department of equipment. Well, I guess that depends on one's definition of progress. We're currently borrowing a Versaform bean bag that I shape into a feeding chair for Q, then suck the air out of in order to hold him in a properly supported position. It looks like it will work for feeding and plenty more -- I rolled him into it like a hot dog and we did a little ballroom dancing, just the two of us. It was pretty funny. It's only a few hundred dollars and therefore much more likely to be approved than an actual feeding chair. Now I'm thinking I'll have to take up yoga to keep up with this scenario, since the seat will work best on the floor or a regular height table.

Q's check-up revealed that he's at about 47% for height, 25th(ish) for weight, and still under 3% for head size. Since it's late, and dark, and it's just us chickens here, I'll admit that this arrangement freaks me out a little. If some kid ever feels the need to comment upon this ratio of head size to rest of him, I'm hoping and praying (and rehearsing) calm and reasonable responses. I mean really. Kids usually ask about stuff because they're curious, their information on the subject in question is fairly limited and they're open to what they're about to hear, as opposed to looking for some way to judge what they're about to hear by their own insecurities. I know this. But still, there's something about the notion of there ever being the equivalent of a playground bully for him that makes me wanna go into Hulk mode. Rowr.

Plus... How to put this? I leave these appointments wanting to call up and discuss the whole thing with someone uniquely positioned to really get all the technical details and then give a darn about them and the kid in question. And then I remember that it's not so much an option anymore. And that there's just no place to hide, no arm to curl up under when it all gets too big to contemplate.

Double rowr. (Clever of me to avoid swearing just now, don't you think?)

More on all of this to come as we go for further progress with equipment. And I'm still hoping to write a little about first grade, since it's so much fun. Oh there's plenty to say, but I have to go blow my nose now and get the kids out the door in the morning, which means I'll be needing to sleep at some point, dreams or no. One last thing before I hop in bed -- this music I first heard as part of a PBS campaign which they ran several years ago. It made me tear up and hug my littles extra tight then and, I've discovered after listening to it again lately, it still does. Sniff. View the PBS spot here for a little something to carry with you.

Many blessings to you as we all head out in our various pursuits. May we survive the politicking, be sure of our affections and our loved ones, hold our punkins close, and revel in the everyday blisses.

The best way out is always through.
-- Robert Frost

Let's go.

Hey

I'm a little busy. Betcha would never have guessed, though. Since I keep posting here so regularly and all. Here's a quick run down.

School: One kid is just flying through her work like it's walking on water. This is cool but I wonder how I'll keep her busy if this keeps up. We're covering a ton of information just now: Life Science and 1600-1850, as well as the more regular, workbooky kinds of things. (Have I mentioned that I heart workbooks? It's a seasonal thing, I think.) I'm tired so the Seleucids, Annelids, and Turks are bleeding together in my head -- I find this to be a somewhat eerie feeling. Music (piano and violin) is going especially well for each of the bigger kids, so it's pretty noisy here. Q loves it and fusses when removed from the immediate vicinity of practice sessions. Pretty funny.

Q: I have a lot to figure out re: equipment. Perhaps this will involve a proverbial girding up of the loins in preparation for battle. It seems likely that we won't be able to get the adjustable arms and software/hardware setup I need to get the boy rolling with head switches -- this because of the timing of the submission of request letter. And there are the really big items -- stander/walker or both, feeding chair, bathing seat, aug. comm. device. It seems likely that not all will be granted and that I'll still be propping the boy up in an odd configuration of pillows and my legs, both of us stuffed into the corner of the couch. I need to be thinking about a different place to live in part because I need to figure out how to have a bathroom that can be basically Q's; lifts, etc. that would take up the tub and render it useless for the rest of us. Ramps for his chair, especially since it seems pretty likely that he's going to use the thing with fervor and until he renders it useless and it will probably be the feeding chair. Which means getting it in and out of the house every day, sometimes several times a day. Guess it's time to up the ante with the free weights.

Small rant: I'm kind of tired of hearing commentary on this topic. He has a right to his experience, and an adequate one at that (we've already had a couple of occasions of "wear" showing on his tender little skin over his spine -- mostly relating to his bath chair), and perhaps we could determine whether or not he "needs" this equipment after someone else walks a mile in these here moccasins? That'd be great -- if you have any connections who could make that happen I think it might turn the therapy/insurance world on it's head. It's really overdue. (rowr)

Misc: Lots of cleaning up to do here. It would help if we were ever home. Violin isn't happening tomorrow, so we'll spend that time folding Mt. Laundry (only three baskets!), putting stuff away, and scrubbing floors/reorganizing our cubbies. What good is it to own all the crayons, pencils, glue sticks, and pens in the world if one can't find them because one(s) didn't put them back where they belong? Indeed.

The perpetual sorting thing is tough -- rather slow going with all those above, quite pressing issues to keep lined up daily. It's really... hard (understatement), finding old medical and dental paperwork, kids school papers (they were so little and cute and time is just flying by), giving away stuff that I might otherwise have kept -- baby clothes and other things that are just too hard to justify keeping in extremely limited space. Still, it seems as though it's multiplying every time I turn my back on it. Or perhaps I'm not getting rid of as much as I think I am. Anniversary presents and pictures, cards, certain toys and other kid things I'm finding impossible to part with. Their mere existence sort of reminds me that I'm not crazy.

A certain someone once interviewed (quite well) in Galveston. When Hurricane Ike was building toward the island, I kept running in to check out the Weather Channel, heart in my throat, shaking my head and thinking things like, "Is that the little amusement park he wanted to take the kids to see? Empty streets, lots of flooding. There but for the grace of God, man..."

At least we're not doing that. It sounds as though it's still a long road back to normal there. Goodness. Funny thing though; I'd rather be rebuilding a physical existence, intact, than sorting one out of boxes. What's the saying? Something like: If you have problems money can fix, you don't have problems. Yeah. We're all doing different kinds of disaster recovery, I guess.

Which brings me to: We're in court tomorrow -- or rather, today, Wed-nes-day (I'm still in the "sounding it out" mode for the first grader so we can talk, a-gain, about how nutso it is to spell it one way and pronounce it another. And who made these weird rules? Anyhoo...). I don't think this date is any bigger deal than any other part of a divorce proceeding. (Which is to say that it sucks nuclear troll toe jam.) Your thoughts and prayers are deeply appreciated as always.

Maybe I should simultaneously burn stress and take advantage of the buyer's market and go house shopping in Galveston? (cheeky grin) That would require some serious juggling of finances and support networks, though. Not happening.

I hope you rest well. Hug your honey extra tight. Or, if you went to bed at a normal hour, give him/her an extra big smooch as you send him/her out the door or welcome him/her home again.

Sweet dreams and blessings to you. 'Night.

Current events

This (two parts) should be required viewing (and the book required reading) for every American able to even remotely grasp the vocabulary used. We'll be using this broadcast as part of our history studies this week, and the kids will see the book in high school.

Did you know this? Perhaps most of us will continue on in our daily activities with nary a blink, basically unaffected by the shenanigans of those goofy people. Don't bet on it.

I hope this is heard far and wide -- she says articulately and with passion what apparently 95% or more of the people (read: voters) are thinking. More of us should be shrieking.

Here: shriek away. It's an election year -- they'll be listening.

You know, if it weren't all so deadly serious, there's material for a great musical in there. Congress, the imperial presidency, angry lawmakers, the theft of WaMu. Upset citizens, exponentially growing national debt, the sinking dollar, foreclosures, clueless leadership. Gilbert and Sullivan would have had a heyday, poking fun at every player, every faction, all who are so blatantly silly and illogical. Perhaps we could write in Pooh-bah or Pish-tush for president.



(Lyrics link)

Murphy rides again

Well, so much for that. E threw up last night and Q needed to get up to be dosed with decongestant, etc. So I've been flirting with the sniffles, sleeping little as Q's meds change. I was hopeful that since his dose had gone up again last night and the rest of the kids were really tired -- indeed, lights out and quiet well before nine -- that I'd be able to kick it completely. Sadly not. Today I feel a bit disembodied. Yuck. Perhaps a shower, perhaps the ibuprofen, perhaps the Claritin or hot tea will help.

I think we'll go for a walk after a while. The big kids are out in the warm sunshine, Q is playing with his fishies and fan (buttons to push).

Later, when my head and arms are once again attached to the same body, I need to share info about the neuro visit, school fun, and why September is a bad month.

I hate snot.

Huh

I was thinking in the shower this morning. Random things. Rabbit trails. You know -- the kinds of things one hashes out and solves in a stream of steaming water and seemingly nowhere else.

For whatever reason, it struck me that I've been incredibly blessed to not have been sick much over the last few years. This is fortunate indeed, given the whole single parent/sole caregiver thing that is my schtick these days. So I wondered some more, thinking about why that could be. Maybe because I'm not having so much personal, erm, contact? Kissing and... stuff. Odd thought, huh? I'm terribly grateful to be mostly well -- amazing given the set of factors working against it. Still. If that's the trade-off, I'd rather have the kissing.

Announcing...

I've dithered a little about how to write this because it's important. You could say that it's kind of close to home. And it's a big deal.

A friend of mine has founded a charity. She's got vision and talent, compassion by the bushel. All these things sound good, don't they? And they are, too. But they're so much more than that.

Several weeks ago, while the big kids were off for visitation, I was at Costco with Q and my mom. I was pushing him in his chair and my mom had the cart. While she went into the dairy cooler Q and I hung out in front of the fancy cheeses case. Because when else might I get to take my sweet time perusing the lovely cheeses? While I was standing there, rocking Q's chair back and forth a little, a nice lady stopped on her way into the dairy cooler to check out the signs giving the whys and wherefores of the new milk packaging. She struck up a conversation about the same. We chatted for a bit and as the conversation wound down (how much is there to say about milk packaging?), I started to move off. Just as I was about to turn and make my way to the frozen foods, she said, very softly, "I have a disabled child at home too."

I turned around, all ears. "No kidding?"

She went on to tell a little about how he's all grown up, she's pretty much his sole caregiver, and it's just the two of them now. I nodded and commiserated about the 24/7/365 thing, the never-ending struggle to balance all the things of "normal" life with health care worries. She said that sometimes it feels like it's endless. Yup. I started to tell her about this charity, Out of the Gray, and grabbed a pen from my mom who had by now emerged from the dairy case. I wrote down website and email info. As I did so, I was explaining that my friend's passion is to serve mamas/caregivers who, "...feel invisible," she said, almost whispering.

By now, tears were streaming down her cheeks. "Exactly," I said. We hugged, tightly. "Nobody should feel invisible." As I left, I asked her to promise me that she'd call or email my friend, if not for herself then maybe for a friend who might need it, but that she'd certainly be welcome to contact and nominate herself.

To my knowledge, she hasn't contacted the charity. But she might have read the website. She might be carrying the little piece of paper around in her wallet, maybe in her "emergency contacts" pocket, something to look at when she needs to.

I seem to be similarly approached by lots of people, certainly more than your average single homeschooling mom of five pushing a little green stroller/wheelchair. Maybe it's because my group is usually brightly smiling and easily engaged? (Not bragging -- I get compliments. Okay, I'm bragging. Whatever. It's my prerogative.) The most recent conversation was struck up when we were in the Arts and Crafts section of the local fair. This time with a grandma, one of only two caregivers (mom being the other) for her 5 year old grandson who was diagnosed with Type 1 diabetes pretty early in life. My kids were busily coloring quilt blocks for a larger project to be used in a local Ronald McDonald House. Other volunteers eavesdropped as I gave the Cliff Notes version of Q's diagnosis/life and the grandma shared that her little guy is pretty brittle already -- no play dates, barely able to attend kindergarten -- but the new insulin pump looks promising. We chatted about research in the field, how exciting the new technology and procedures are for diabetics everywhere. Then I told her about Out of the Gray and wrote down contact info.

Dang if the ladies there weren't all red-eyed and sniffling by the time I chugged off with the kids. The grandma, especially.

What does one say? I dunno, man. Except maybe this: apparently, there are a lot of caregivers out there, striving like mad, burning dozens of candles at both ends, not even thinking about the effort put forth or the dedication they exhibit until someone sort of whispers in their ears, "You're not invisible."

Reminds me a little of some old Journey lyrics...

Here I stand so patiently
For your lights to shine on me
For your song inside of me
This we bring to you
In the shadow of love
Time goes by leaving me helpless
Just to reach and try
To live my life
These are my reasons, so
here we stand so patiently
For your song inside of me
For your lights to shine on me
This we bring to you

Here's the link: Out of the Gray.

It's a big deal.

Testimonials

I'm sitting here waving my amazing Wite-Out wand. (Thank you, L.) Is it wrong to have such affection for inanimate objects? Zip-loc bags, nice shelves/shelving, spreadsheets, and many other non-living things have at various times been the object of a crush. I simply adore good tools. Besides usually being out of my price range (free), they're hard to come by, especially in appropriate configurations and at appropriate times. For years and years now I've used these little boxes from IKEA that are something like $4 for 3 -- assorted colors. They hold pens, crayons, scissors, stickers, shiny stuff, glue, erasers, calculators, you name it, and they stack and label so nicely. And speaking of office supplies, how can one not go on and on about an excellent automatic pencil? The ones whose leads are just soft enough, not brittle, laying down good, even pigment, whose erasers are firmly attached and efficient without tearing the paper?

More household items: I love microfiber cloths -- you too can clean your whole house with just water! (Except for the germy yuck, which requires bleach or those super nifty Clorox wipes.) I've also loved Cutco, Cuisinart, and Kitchenaid brands and recommend them wholeheartedly. There's really nothing like having good equipment in the kitchen. Or anywhere, really. (Stop snickering, people. Geez!! What are you, twelve?)

Well, I'd better get back to the paperwork. A bit more English for the day (waving Wite-Out), then supper, off to swimming, home again for snacks, music practice, quickly to bed before spending tomorrow at lessons. Yee-haw! Q's got a Neurology appointment coming up on Thursday. We've had to reschedule too many times so I hope all the planets align for this one. Speaking of planets, have you been enjoying the giant moon where you live? It's been a lovely creamy yellow, hanging low in the sky and seeming enormous. It looks a little like a good wheel of Brie. Yum.

If you have a minute, my mom could use prayers -- she's having a double root canal tomorrow as a result of a fall earlier in the summer. It's been bad enough that she's looking forward to the procedure (shudder) and there's even more (worse) to come after this. Poor thing.

What are your favorite tools? (Starbucks counts.)

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

Quote

Throw your heart over the fence and the rest will follow.
--Norman Vincent Peale

Running

How to best derail meal prep for ten children? By turning on the wrong burner and consequently blowing up the big glass bowl. Yup. I was a little distracted...

But they're asleep now, every last on of 'em after three rounds of pottying, two sleep walking incidents and proper application of kisses and back scratches. I think someone's story is still playing though, so I'm planning to turn that off before turning in.

Have you ever noticed just how quiet real quiet can be? It's a little weird, actually.

The color-coded schedules are more or less set up for the school "year" -- hanging on the wall in a page protector = official. The last of the itinerant stuff is waiting to be (re)organized. The kids did their cubbies a few days ago and I think the rest is up to me -- switching out textbooks by grade, references by subject/time period of study for the current year. The read-alouds are piling up higher and deeper, thanks to some lovely folks whose boxes of donations included stuff I already had on the kids' reading lists. Have I mentioned that my motto truly is: Expect Miracles? Really. I'll have to write more about that sometime -- "odd" things often happen. Things that, were I not expecting miracles, might render me a little speechless.

I'm off to sleep fast before hitting it again tomorrow. Hope your day brings you a few miracles of appropriate scale.

XO

Laughs

Laughter is the best medicine, you know. Go laugh.

Shhh

It's quiet here. There's the clock ticking, the whistle (horn?) on a distant train, the wind in the trees outside the window, computer noises, and me blowing my nose. This is really weird.

Must be time to wake up the kids.

Yippee!!!

How pathetic is it that with the girls tucked in by 9:30, the little boy out by 10:30(laid down just after 11pm), and the big boy ensconced in his bed, I am now nearly giddy with anticipation of sleep?!

Q's in his own bed, even. Sure, there are cold meds involved, sure he's still a little congested, and yes, he will probably be up again, snorting snot, in a few hours and I'll get to spend another night with my approximately 30 pound sack o' snuggles draped across me on the couch/rocking chair/bed and one thousand pillows. Yes, I will be the one you spot walking like the Hunchback of Notre Dame because my neck will be stuck like that. But right now I'm just going to go enjoy the giddiness of the moment with my fingers stuck firmly in my ears, relishing what horizontal, unconscious denial I can get away with.

La la la...

G'night.

Misc.

I was going to post this last night, but then Q went down only intermittently until 5am. He's just now stirring in his little easy chair... Here 'tis:

So the first week of the new fine arts academy is done. At the end of the last day when one of the directors asked the kids if they wanted to come back again next year, there was lots of fist pumping and shouts of "Yeah, yeah!!!" I'm guessing they liked it.

The best part for me personally was the reminder that: "...it is important to point out the difference between burying your dreams and simply suspending them. To bury your dreams means to be unaware of them, or be in some sort of conflict with them. (...) On the other hand, knowing your soul does not mean that you have to accomplish every dream at once." (Henry Cloud, PhD, in Nine Things You Simply Must Do...) He goes on to tell about a woman he knows who has tabled her dream of law school while she raises her young children. "While she desires a law career, she also desires to raise her children well. She puts both desires in perspective with her values and what she knows her children need from her. That is not burying anything. It is holding her desire for a law career on the altar of sacrificial love, which is the highest form of heart and soul that we know in this life. It is the ability to 'lay down one's life' for those he or she loves."

To whit: I got to help wash brushes, mix tempera paints, talk with children about the colors and shapes they were making, get messy with charcoal and watercolor crayons. I helped cut 32 mats for the finished work, and arrange and hang the final show. I helped little ones who had never read music before to hit their notes with chimes. I picked up trash, fetched water bottles, and washed some more brushes and palettes and tables. We discussed ideas for masters classes, perhaps framing or painting for the high schoolers. I had an utter blast. I can't remember ever seeing so many people in one place who were so tired and still so smiley.

The performances during church and after were neat. Some mamas teared up, just a little, dontcha know. And the inspiration and ensuing discussion for next year's plans were so cool. Lots of really great suggestions made already. Kudos to the persons who jointly held the position of overall organizers -- they pulled all kinds of stuff together seamlessly. And worked their hinies off. I hope they're still asleep, recovering.

The kids are all energized for lessons now, plus new stuff as we stare down the beginning of the new school year. We've joked that maybe we'll just chuck the whole silly "skool" idea and just do piles of lessons for a few months (heh). Or maybe we'll end up just doing math and spelling en route to all the activities? They can still read while Q's in therapies... I'm kidding. Sort of.

We've been looking at service and volunteer possibilities as well. It's tough with this age range to pull off something like feeding the homeless, etc., but we'll find something to do because that's part of the life/curriculum, thank you very much. We've sent a couple of small care packages to soldiers in Afghanistan and the kids have been talking about how kids there could maybe use small items that would help them be warmer through winter -- mittens, hats, etc. (G read Three Cups of Tea this summer and he recommends it highly as something that will change the way you think about that region. I agree.) We did His Kids through church the last couple of years. That was amazing. Makes me nauseous to think about children being so low in resources, homeless, left wanting. We've corresponded with orphans in Mexico -- children the same gender and ages as mine. Their buildings were in the path of the hurricanes last year and the rebuilding process has been arduous, but the progress steady. One little girl thinks her mommy is coming to get her any moment and has warned a couple of times that while she likes writing to my daughter very much she won't be there much longer to write back. I inquired and no, it isn't true. It just rips my heart out.

This thing of children slipping through the cracks brings to mind a topic that's lingered in my head lately: It's compelling to me that we often find ways to marginalize the humanity of others so that we might dismiss their worth as people, thus avoiding any response-ability. I've witnessed situations over the last several months that have made me flinch. Labeling someone as a "slob," "mean," "stupid," or, say, "Muslim," "Catholic," or "poor," makes it easy for us look down on them, to look past them, generally treat them as less than or as if they're outright invisible. What for?

In previous posts I've written a little about disabled folks taking the brunt of someone's untethered limbic system/lizard brain. What makes it okay for people to do this? We all justify the most astonishing things, really, in order to self-soothe. But how does it soothe one's self to be abusive to another? These examples are extreme, horrifying. But when was the last time you yelled at your kid or spouse or some "idiot" in traffic? For all you know, that person who so rudely cut you off is in the middle of an aneurysm bursting. Ya better hope that during your next breaking aneurysm, whomever happens to be nearby extends more grace to you than you just did to them.

Be kind, for everyone you meet is fighting a hard battle.
--Plato (as quoted on the wall of a flight school)

Anyway, it's just something I've been thinking about. And to quote me: You are not the center of the universe. Or: Get over yourself. I've found that these axioms are best kept as reminders to oneself as they are unlikely to be well-received no matter what tone one might use for delivery. Discretion is helpful when opening one's mouth (wince). While we're here, let's talk briefly about whether or not you already know better. Well sure you do. You've been on the planet a while now and you've picked up a few things along the way. Some of them really productive, some of them not so. Does your knowing this and still messing up make you a hypocrite? No. Unless you're preaching that people shouldn't beat their wives, then going home and beating your wife. Or telling all you encounter how evil chocolate is even as you suck it out of it's wrapper in your closet the moment you get home from your now world-famous seminars on the evils of chocolate. These kinds of scenarios would make you a hypocrite. It is a word overused by those who feel that they're being judged and found wanting. Of course, sometimes they are being judged (hand-smacking -- you know who you are and you can stop now) but often, it's been my experience that the invocation of the term as a label/slur means there's a serious lack of understanding at play -- see the previous paragraphs. A nasty feedback loop, no?

So -- what for? Most everything we do is somehow about self-protection. We like to think of ourselves as functioning on a higher plane than our ancestors or forest animals, so from what do we need to be protected? There aren't any bears on the front lawn. Not a single disabled person is trying to steal my lunch. Children don't choose to whom they're born and then plot to become criminals. Your spouse loves you and wants what's best for you, your kidlets adore you -- why are you freaking out? Why are you making things harder for those who love you most? Why must you find ways to continually make sure that those receiving help are deserving of it? How will you ever know that, anyway? If you are remotely religious, your Higher Power has all that under control. You can let it go and let him/her do the job. Really. It's true. If you're not remotely religious and you're doing this, may I suggest you re-examine the beliefs that have placed you within spitting distance of your own brand of dogma? And then, religious or not, maybe you could engage in some serious self-examination (not navel gazing) which might include some good books or long talks with smart people, professionals or otherwise.

In a nutshell? Perfect love casts out fear (1 John 4:18). Fear, through contempt, drives the nasty stuff (road rage, Darfour). You don't really have anything to fear and you know it. You are a human being of infinite value (humming: Redeemed, redeemed...). You already have a bottomless well of patience for those little offspring of yours. You have the words that your spouse needs to hear. You know better. And it will be okay. All of it. Just make those little choices, one at a time, that allow you to pat down the cranky lizard brain, to be gentler with yourself and those you interact with. Push and hold that door shut on fear and contempt lest they skew your version of reality and cost you everything you love. Just keep swimming, baby.

Well that subject sorta got away from me. Moving right along...

Q is crowing in the next room. Chuckle. He's getting better and better with the head switches, increasing recognition and accuracy in choosing colors and games. No small feat, this. For a kid with vision issues, whose motor planning abilities are hit and miss, to be able to get the switch when he wants to and when he's asked to and do so appropriately and with good timing? WAHOO. A couple of months ago, his OT mentioned potty training (gasp). Yikes. I mean, yippee!! It's just that there's going to be all kinds of other things to overcome in the process. The ongoing work on his posture, muscle tone (too high/ too low), ability to sit unaided, to know when he needs to go potty and then to communicate it effectively. Then there's everything with the big kids (school, lessons, fun and games, character development, crafts, laundry, messes) and the prospective acquisition of software and hardware and aug. com. devices and assistive arms for his chair, with working on standing, walking, a walker, helping him to keep himself entertained and clean and fed and...

You get the idea. Sometimes The New Normal makes me tired. Every once in a great while, I would like someone else to do this for a bit.

Earlier this evening I was filling out the fridge calendar for the next couple of months. Turns out it's plenty busy with just the ordinary everyday stuff, never mind ortho and dental, neuro and vision appointments. Lest I sound whiny, I'll be perfectly clear: I am grateful to be here, doing all this, worn to the best kind of frazzle, mama to these incredible little (not so little) human beings. Sometimes I just wish... things. That is all.

And one more thing. About the van issues. We're okay. We're good. We're covered. When I know how to talk more about it, I will. Let's just say for now that I won't be stuck alone with five children, in the dark, by the side of the road, while Q suffers a grand mal seizure (a worst fear of mine) because the poor old thing has finally given up the ghost. We are grateful. I am grateful.

Hope your summer has been spectacular thus far and that your prospects for fall are enlivening, intriguing, and wholly worthy of your attention.

XO,
me

Wince

Though movies are right at the bottom of my priorities these days, I generally do like Ben Stiller's work. From what little I know I sure won't be seeing Tropic Thunder. Read more here. And more..

I wonder how any of the actors would think about this issue if one of their kids were marginalized with one of these labels. I doubt that any of the people involved with the film proceeded with their scripts and plans in a spirit remotely malicious. However. To quote VeggieTales: Sometimes not helping is the same as hurting. And in this case, the hurting is of those least able to defend themselves. Who said that a society is judged by how it addresses it's most fragile?

Yeah.

Soul food

Only Friday's classes remain before our day of big performances. This has been the most incredible week. Q has loved his time listening in, the bigger kids have decided all school should always be like this, and the grown-ups involved are looking a little bleary. I can't imagine a more fun, enormously talented, thoroughly enjoyable group to have spent a week with. New friends are firmly made and plans already laid for next year's academy of fine arts.

I sure hope you're planning to have this much fun sometime soon -- everyone should possess a good pair of laugh lines. Now off to bed to sleep fast so we can pop up and do it again.

What a day!

We hauled out of the driveway at 6:53 a.m. Everyone but Q had by then had breakfast, was nicely dressed, and appropriately groomed. We made it in plenty of time and thus began our week of summer arts academy/"music camp." The kids have a variety of classes including sundry keyboard things which involve an upcoming walk through a local cathedral's organ. It went astoundingly well, in spite of the fact that I'm a volunteer and Q was trailing the activities all day. He ate well, played well, loved the percussion (didn't want to give the instruments back), sang to the bells and chimes, and lost it only briefly when I hadn't provided him with an appropriate change of scene.

The whole experience was just awesome. S got the rhythm for the back beat immediately, all by herself, the only kid in the class to do so. K drew a totally fearsome pirate and is chafing to play the organ. E made a new friend, a girl who was teary-eyed at the beginning of the day, but quickly clued E in to the peculiarities of handbells. G loved everything but choir. The changing voice, you know. The group is well organized, the teachers incredible and so positive.

Tomorrow Q's going to therapy with my darling aunt. My mom is still on the mend so I'd be hauling him with me again if not for "aunt grandma." So I'll be on my own with the bigger kids. We made our lunches again this evening and all were far more willing to close their eyes tonight than they were last evening. A certain level of exhaustion is good for the soul.

When we got home, we split our time between catching glimpses of the Olympics and vacuuming, running laundry, unloading groceries, making and cleaning up dinner, cleaning out the van and organizing things for tomorrow so we can hit it again before 6 in the morning.

I doubt they'll be as excited to pop out of bed tomorrow. Wish me luck.

The boy is sacked out now, having missed out on a nap, so I'm headed off too.

Faster, faster

Q is on the "I'm too cool for food" kick again. (noises of exasperation) I'm hoping it's just his molars coming in that's throwing him off.

And the good news about food? Dinner is simmering. Quinoa, garlic kale, and veggie coconut curry. Can you smell it? Concentrate. How about now? It's okay if you can't -- we'll drool for you.

We're out the door before seven tomorrow morning. The good news is that the laundry's running, the kids are bathed, our clothes are being laid out as I type, and we're going to pack lunches and watch a little Olympic gymnastics before bed.

Yeehaaaw.

Animalia

G has saved me from a tree frog. I nearly stepped on the poor thing in the living room this morning. He was just little -- under two inches long. He would have been cute had I not been so startled by his presence. Tree frogs in the living room? Not the usual thing a-t'all. The boy fills big shoes -- his dad ushered a baby skunk out of our family room late one evening. G remembers this because he'd been up reading, though he was supposed to be asleep. My squeaking in alarm from my perch halfway up the stairs, uh, caught his attention, so he was peering around the corner whilst his daddy calmly handled things.

When G was about three weeks old, a rather gigantic alligator lizard got in through the cracks in our little old rental house. Even missing most of it's tail, it was about 14 inches long. I looked at it, turned around, went to our room with baby G, laid him on the bed, then closed and stuffed towels under the doors between the kitchen and the bedroom. We hung out there until a certain someone arrived home from work to rescue us. I might have dealt with that one myself (or not) but I thought something that large might just bite and then what? I'd have to walk to ER (only about six blocks) with my newborn son so they could clean out wounds? Or maybe I'd somehow communicate salmonella to the baby? Uh-uh, no way.

Then there was the mouse that made his home in the insulation in our stove and died, so when I went to preheat the oven to make pizza one night the house filled with the most awful stench. I was pregnant (these things never happen when one isn't) and had to go outside, gagging, so I wouldn't throw up. Roasted mousey a la rigormortis is awful. Thank God mister was there. He took the stove apart and got rid of the unfortunate creature. I can still sort of taste the smell...

The end of June we were en route to a family reunion and stopped at a favorite family spot for vegeburgers and curly fries (this thought atop the last paragraph is not so very nice). As we were leaving, the kids wanted to spend a little time under the trees in the grass, leaping, stretching, wiggling, before we got back in the van for the rest of our trek. I put Q's food and diaper bag away and turned from closing up the van to see G and E following the progress of a baby bird along the edge of the building. He'd hop a few hops and stop, then squawk at the eaves, as though calling his mom who must surely be up there and just be missing him like mad, right? "Right? Mom? I know you're there. MOM!!"

We watched for a minute. K was on the grass with Q and S was standing with them, transfixed. It was clear that he (she?) was healthy, just too young to fly. By this time several tables full of patrons had noticed what was going on and I'd grabbed a napkin. With a little discussion, we decided the best thing to do would be to catch the little guy and put him up in the most likely tree. G and E wanted to try to capture him, but they were tentative and the birdy loud and fast. I took the napkin back from G and wrapped it quickly around the little ball of feathers. He didn't fill my hands, cupped together.

G selected the noisiest tree (more likely to contain parent birds) and hauled a very heavy picnic table close enough, all by himself. He climbed up and I handed him the bird in the napkin. G released him on the nearest sizable branch with sort of a hollow to catch him in case he was wobbly. But he wasn't. He chirped once and hopped off, disappearing up the branch into thick foliage.

A smidge anticlimactic, that. G and I sort of blinked at each other, then he jumped down off the table, we returned it to it's proper spot, and headed back to the van, blushing to the applause of nearby patrons.

This scenario ended much better than our previous baby bird incident about five years ago. That one involved us praying over a dying fledgling as the kids tried to shoo the perpetual train of ants off him. That was awful. The kids were littler and not really grasping that death can be merciful. And how do you explain that to very young children when you'd like to shield them for just a little longer?

After a strange series of noises two nights ago, G chased off a raccoon (with help of a friend staying over), reclaimed a prodigal who we had assumed was dead (but may have been living off the bugs under a particularly large cedar), buried an actual dead chicken (cause of death: infected dog bite) and marvelled at the strange and varied bugs around it's carcass (so glad he loves entomology -- shudder).

On that happy note, I'm off to feed breakfast to my peeps.

Progression

This [Bratz] doll projects a sexuality that has more to do with working on the Sunset Strip than enjoying a healthy girlhood.
-M. Gigi Durham, The Lolita Effect

There have always been changes in society from one generation to the next. Parents have always noticed how their children’s world differs from the world of their own childhood. But what is happening now regarding sex and sexuality in the media and popular culture goes far beyond the changes that have occurred between other generations in the past. A revolution is taking place that we need to take seriously. It is a revolution that is harming our children and harming the wider community.
-Diane E. Levin and Jean Kilbourne, excerpted from So Sexy So Soon (Go read the article)

Our Lord finds our desires not too strong, but too weak. We are half-hearted creatures, fooling about with drink and sex and ambition when infinite joy is offered us, like an ignorant child who wants to go on making mud pies in a slum because he cannot imagine what is meant by the offer of a holiday at the sea. We are far too easily pleased. (emphasis mine)
-C.S. Lewis, as quoted in The Quotable Lewis

So the obvious question arises: How do we encourage our children to engage on deeper levels when nearly everything around them demands they orient toward instant gratification, cultivate appearance over character, and veer toward easy "solutions" rather than dig in and create long-term stability?

I dunno.

I guess the biggest obstacles kids face today are the examples set before them. (Lots of research available on the subject. The Unexpected Legacy of Divorce is a particularly pointed tome which discusses this subject and others related to it's title.) Children rarely choose to follow the old adage: Do as I say, not as I do. Once again, I suppose this indicates that we, their parents, have to get off our collective hineys and set the bar higher for ourselves whether we like it or not.

And now Q's out, so that's all I have to say for tonight. Rest well and then give out some extra hugs and kisses.

XO

Random quotes

Argue for your limitations and sure enough, they're yours.
-from a therapist's office wall

That the birds of worry and care fly over your head, this you cannot prevent. That they build nests in your hair, this you can prevent.
-Chinese Proverb

“You have heard the law that says, ‘Love your neighbor’ and hate your enemy. But I say, love your enemies! Pray for those who persecute you! In that way, you will be acting as true children of your Father in heaven. For he gives his sunlight to both the evil and the good, and he sends rain on the just and the unjust alike. If you love only those who love you, what reward is there for that? Even corrupt tax collectors do that much. If you are kind only to your friends, how are you different from anyone else?"
-Matthew 5:43-48, The Message (Pesky points made there)

More later. People need stuff.

Vomit

I hope I don't get in trouble over copyright infringement, but right now I don't so much care. May God have mercy on these people's souls because I doubt many of us could offer them anything other than the slow, hideous deaths they've earned. If you search, there seem to be pictures too. I can't bring myself to post them.

August 1, 2008
Starved, disabled girl was failed at every turn
By KATHY MATHESON
Associated Press Writer

For days before Danieal Kelly died in a fetid, airless room — made stifling hot by a midsummer heat wave — the bedridden teenager begged for something to drink until she could muster only one word: water.

Unable to help herself because of her cerebral palsy, she wasted away from malnutrition and maggot-infested bedsores that ate her flesh. She died alone on a putrid mattress in her mother's home, the floor covered in feces. She was 14 but weighed just 42 pounds.

The nightmare of forced starvation and infection that killed Danieal while she was under the protection of the city's human services agency is documented in a 258-page grand jury report released this week that charges nine people — her parents, four social workers and three family friends — in her ghastly death.

The report describes a mother, Andrea Kelly, who was embarrassed by her disabled daughter and didn't want to touch her, take her out in public, change her diapers or make sure she had enough fluids. It portrays Daniel Kelly, the father who once had custody of Danieal, as having no interest in raising her.

And it accuses the city Department of Human Services of being "uncaring and incompetent."

"It was this indifference that helped kill Danieal Kelly," an angry District Attorney Lynne Abraham said. "How is it possible for this to have happened?"
The report should "outrage the entire Philadelphia community" and bring about "earth-shattering, cataclysmic changes" at the Department of Human Services, Abraham said.
Andrea Kelly, 39, the only defendant charged with murder, was ordered held Friday without bail. The social workers — suspected of falsifying home visits and progress reports in the case — face charges ranging from child endangerment to involuntary manslaughter. The family friends are accused of lying to the grand jury about the girl's condition before her death.

None of the lawyers for any of the defendants had any immediate comment.
Human Services Commissioner Anne Marie Ambrose, in office only a month, said Thursday that she is intent on improving child safety and worker accountability in an agency that has repeatedly been accused of failing to protect children.
Late Friday, the city announced the resignation of Assistant Health Commissioner Carmen Paris. The grand jury had accused Paris of interfering in the investigation of the girl's death while she was acting health commissioner, but found insufficient evidence to charge her with obstruction of justice.

The report on Danieal's death in August 2006 documents a downward spiral from the early years that she spent in Arizona with her father and his girlfriend.
Though Danieal attended special-needs classes only sporadically, a school report described her as an active learner and "one of the sweetest students ever enrolled in this program." But allegations of parental neglect soon surfaced, and following Daniel Kelly's breakup with his girlfriend in 2001, Danieal never again attended school.

Daniel Kelly and his children moved to Philadelphia in 2003. He eventually asked his estranged wife to move in, even though she had several other children and he knew she was incapable of caring for Danieal, authorities say. He then moved out.
"Daniel Kelly was well aware what deserting his daughter meant to her safety and welfare," the grand jury report said. "He just did not care."

The Department of Human Services received at least five reports of Danieal being mistreated between 2003 and 2005. All described a "helpless child sitting unattended, unkempt and unwashed, in a small stroller in her own urine and feces," her screams ignored by her mother, the grand jury report said. The stroller, which served as a wheelchair, apparently never left the house.

Agency employee Dana Poindexter, assigned to investigate, also ignored Danieal, authorities say. Already having been suspended after a 3-week-old baby died on his watch in 2002, Poindexter continued his "slovenly, neglectful and dangerously reckless work habits" after being assigned the Kelly case, the grand jury said. He did not file a single report, authorities said.

The Kellys finally were assigned help from a private agency in 2005. Employee Julius Murray was required to visit the family twice a week, but authorities believe he may have come to the house only once — to have Andrea Kelly sign predated forms attesting to future visits.

The grand jury report said Laura Sommerer, a city social worker, failed to hold the now-defunct company accountable when, months later, Danieal still was not enrolled in school or receiving medical care.

And after Danieal died, authorities say, company director Mickal Kamuvaka held a "forgery fest" in her office where she had employees "concoct almost a year's worth of false progress reports."

But authorities say Andrea Kelly, whose other children are now in foster care, is primarily responsible for her daughter's death.

The report said she was confronted repeatedly by her own mother, uncle, friends and even two of her sons about Danieal's deteriorating health. She would lie or put them off by saying she would seek help, or banish them from the house, authorities say.
In the meantime, the report said, she entertained friends, attended classes and fed her other children.

"This behavior indicates that Andrea Kelly did not merely allow Danieal to die," the report said. "She may have even wanted her disabled daughter to die."

When an ambulance responded to a 911 call for Danieal on Aug. 4, 2006, the girl had been dead for several hours. Authorities said she was so emaciated she looked like the victim of a concentration camp.

She had been lying on the filthy mattress for so long that her body outline was imprinted on it.