My Turn

A dear friend asked me to write to a mother whom I do not know, whose daughter was recently diagnosed with autism spectrum disorder. I cannot know what this mother faces, or what choices she might make for her child, so I did not tell her of the truly amazing progress that LRHF has made since July. What music is it to hear him speak his brothers' names. How he says, "I love you," and "Sweet Dreams." How I now know that he sometimes prefers pretzels to crackers after school (I know because he told me. He told me.) I refrained from mentioning the commonplace amazement of his therapists and doctor at my son's sweet and steady homecoming. I did not tell her any of this because my blessings are beyond my hopes and rare as pearls. I tell you, of course, because when I did bother to look up, you were always right there--along for the drive.

This diagnosis is a pointing finger and nothing more.

And now it’s my turn to whisper the important words--words that will flicker just brightly enough to keep you from falling all the way down into the dark: Your beautiful child remains your beautiful child, regardless of where a finger points. Here is my hand, Mommy--you are part of us now, and we mothers of auties pass those words down to new mothers of auties like other mothers pass down silver sets. In fact, it may well be that this one act and these few words are the single speck on the spectrum that we mothers hold in common.

Autism is so many things, so many different ways of being. People will ask you “what is autism?” Believe me, they’ll ask you all sorts of crazy things, but when they ask this particular question, they may as well ask, “what is skin?” How do you answer? How can you? But since no mother begins this trip with answers and since you cannot give what you don’t yet have, just leave it. Leave it. This is your trip and you will gather so very many things along the way, so please pack lightly, and that means leaving other people’s stuff behind.
Take this road through whatever terrain you must--anger, grief, frustration--and know that you will come out the other side a changed and stronger mother. Go ahead and take the long road with all the hills and muddy spots. Stop where you feel the need, think a lot about turning around, and understand that you will always bitch about why you have to do all the damned driving. But you will drive and drive. And then drive some more. You will keep moving forward, I promise.
Claim your place with like-minded mothers and know that we are one goddamn tough bunch. We will stand with you shoulder-to-shoulder, stretch mark- to-stretch mark because we have all done the drive, in our own way, at our own speed through many, many stretches of bad weather

My autie is a million kinds of magic to me. Just as he had no words for the first five-ish years of his life, nor do I have words for our bond. His everyday obstacles show up on time and every day, but they are only as welcome as we allow. So often, too often, we have a thing with the obstacles—we set them apart and make absolutely certain that we can say, “That’s my kid there--the different one--and wow, will you just look at the size of his obstacles ? They are RIGHT THERE and THEY ARE HUGE.” Let me be very clear now, that those same obstacles have no power over the million kinds of magic, not the least little bit.

Say that outloud to yourself right now. Good.

This child sits closest to my heart and I can tell you even in his worst moments, God shines tiny bits of my best self. He is unbridled joy. He has a lightness that comes in quite handy during the darks. And while my chaos is just tired mommy chaos, his chaos is—well, he’s often quite glorious in his chaos. In fact, our road is occasionally strewn with his gifts of glory wrapped in chaos. Now, understand that these gifts are rare and precious. They are mostly unexpected and sometimes quite sticky and of unknown origin. Some days you will have to look long and hard to find even the dullest one. Some days you’ll give up looking altogether. Again, please know that giving up on today can never, ever forfeit the gifts scheduled for tomorrow. Keep looking. You’ll see.
LRHF's diagnosis shattered me--god-- like a rock hitting glass--a big ugly hard thing hitting a not-very-sturdy-at-all thing. We sat in that tiny room with the tiny chairs and filled out those very not-tiny-at-all pages of parent questionnaires and I cried. The whole time. Long pages. Lots of crying.
Not a good day, to be sure, but one that you’ve now survived. You remember the tiny room with those tiny chairs, and you surely recall filling out the stack of parent questionnaires. You might also recall that your answers were often limited to three choices:
Often, Sometimes and Not At All.
So do you bend your beautiful child to fit those tight little circles? Oh, you know that answer already. And when you worry that your daughter's diagnosis might change how you see her, who she is, and how she may find limits, that answer (finally!) fits quite nicely into one of those circles.

That answer is Not At All.

(and um...I don't know what happened with the font/bold thingie there in the middle of the whole thing. Sorry. )

Do I Look Fat to You?

Or, more to the point: Am I okay?

You know, I would ask around, but I looked around, and there's no one around.

I'm alone.

Days, weeks pass in which I see only the boys with my same last name and those who provide therapy for LRHFs with my same last name. There are no "quick bites." No "girls' nights." No "mani-pedis," no "retail therapies," and no...well, no one to ask if I'm okay.
(Please know that I am exceptionally grateful for anonymity right now because I really do understand that this is a whole new kind of whiny and selfish. I know that. I do.)

My friends are gone. Fallen away. No, more likely, I am gone and fallen away and left back in some time when I did stuff. Stuff that was me and not in spite of me (well, probably sometimes in spite of me, but not directly contradindicative of me). I was social. Did social stuff. Had social events. And now I'm in this absolutely alone place shaking my head and wondering what I did to let it get so damned cold. Am quite afraid to ask if this happens to anyone else because am not quite sure I want an answer.

(Most days, in fact, I think I know the answer.)

Can I just tell you that everyone else is happy? I know this because I have Facebook and I can see them busily being so happy. So busy. So chatty. So goddamned social. Oh, you know, old friends do pop in and get all friend-y for about a day and a half but they are not the ones who want truth when they toss out a breezy So how are you? And I need to tell the truth just now. I need to say that I am drowning in truth and that truth is totally kicking my ass. Autism, dementia, depression--all just really kicking my sad and tattered ass.

And can one person piss off large group of people without making contact or telling nasty lies about them? I don't know. I would not think so. And besides, am very careful about telling nasty lies. Learned that lesson the hard way.

So, do other people tell the truth about sad and sick and mad? And then are there other people who listen to that first group? Really, I'm asking. Because if such people do exist, it would appear that at some point I lost them and I don't know why. Have I gone so pale and leaden and bent that I am gone?

I feel gone, I do.

I would ask my friends about this, but maybe you can see how that might be sort of silly.

Bad Ass Mama Breaking the Law

Today I got a speeding ticket. I was taking LRHF and his therapist to the playground and I was playing autobahn at five miles over the speed limit.

Then I got a citation because I could not prove that I'd had Lasik surgery, and thus appeared to be non-compliant with the restrictions listed on my license. Was tersely reminded that "driving in this state is a privilege, not a right."

WTF?

Seriously, WTF?

I hope with all my heart that everyone feels safe in the knowledge that our police force is doing its job with integrity and compassion.

Now if you all will excuse me, I must be getting back to the meth operation in my backyard gazebo. It's all about timing with that stuff, you know.

Sheesh.

Summer Lovin'

My husband goes back to work today. And when he does, I will cry. Not that my tears indicate anything spectacular, save the rather spectacular nature of stress, but still.

Am a Big Girl.

He's been home for a two-week unpaid leave, just like every other newspaper employee in Our Fair City, and while it is scary and it does appear that his profession is on nothing more than a brief life's breath, it was really so lovely to have him here all the time that I will cry when he leaves, even knowing full well that he'll show up beside me sometime around midnight.

He is some kind of father, you know? Really. (not that that points out my own shortcomings, no sirree, but at least one of us is worth our parenting salt and that's good, I think.) He hauled those boys all over Tarnation and he did this of his own free will, whereas I would probably put them in the backyard, gesture toward the garden hose, and retreat behind a firmly locked door until mealtime. So it's good that he was here.

LRHF's therapy got rolling and that's like six (read: ten) posts right there, but it entails a series of monumental shifts in family time, family dynamic and family bathroom use. His therapists are here for 4 hour sessions just about every day, and they are lovely and energetic and fun (for god's sake!) and who can blame Fuzzy and Big Boy for wanted in on the action, right?
But alas!$32k Therapy is for the autistic, of which we have only one. So it's tricky. Rather like installing a water park in the back yard and refusing to turn on the water. Poor guys. And I'm so paranoid about LRHF getting what he needs that my patience is shot. And how do I explain? I mean, really? How do I explain all of this being about LRHF? I can't make that fair--I can't even make it make sense. So Daddy shepherds Fuzzy and Big Boy to zoos and science centers and aquariums and parks and baseball games. On his time off. In this weather. With those boys.

Oh my soul, I am grateful for him. (I know that you're thinking that I should show this post to him, maybe send it to him..."how sweet!" you're thinking. But sorry, he doesn't know that I write anything more than shopping lists.)

As with so much of the past year or so, this summer has shaken me to the core of all my everythings. There is kindergarten, paraprofessionals, finances, dementia, meds, (did I mention finances?) loneliness, autism, tomato fungus, and so much of the unknown that I can't fathom this snowglobe ever coming clear, no matter how long I wait.

But what I know is that when my husband leaves for work today I will cry--not out of anxiety (okay, maybe a little anxiety), but simply because he is my Beautiful Husband, my Very Great Love, and I will miss him.

Mostly for Me

I'm here. Sort of. Sometimes. And I need to write.

So not because I think anyone is wondering, but rather, to remind my own ragged self--

I will tell you about tomatoes and swimming pools and ABA therapy and furloughs and old crap traded for new crap that is really just all the same crap...

I will. I promise.

Doesn't Bode Well for Summer

This highly unseasonal chill that began the morning after we set the pool up.

A week ago.

Supposed to continue for another week.

Sweet Jesus.

Light in the World

As my mother's world continues to turn inward on itself, as it discards awareness and interest, my son's world seems to be cracking open, unveiling interests and abilities of which I had not dared dream.

No, I am not objective. And no, I don't think it is entirely measurable in the way that we like to measure and document such things, but his world is taking a slow, but clear outward turn that I can neither deny or explain.

He seeks out his brothers for play (excellent, new, and appropriate behavior). He joins them in their games--huge stuff, folks. Really. He follows multi-step directions (e.g. "turn down the volume, LRHF.") Wow. He cleans up his messes. He uses kleenex proactively (I will sneeze soon...let me find a tissue and hold it to my nose). Words, words, words...lots of new ones, lots of understandable ones, and lots of strung-together-in-sentences ones. Tonight, I am pretty sure that he read a word on the computer screen. Finally, I couldn't tell you the last time we had to shut that damned dutch door. Seriously. And you know that I am not a happy sunrise kind of gal about this autism beast. We've established that I lean toward glowering sunsets fading into that dark, dark night, I know, but even in this autism dark, I see his little lights glowing brighter and brighter--multiplying and shining down the path.

I know these are maybe small things to you, things your children, your students, your nieces and nephews did with an ease that defined the simplicity of the task. I know. But ohhhhh, these tiny lights, these new and beautiful things are glorious glistening gifts when they come so unexpectedly.

I don't know how or why. I don't know if it makes sense. I only know that there is more light in the world

A Motherless Child

How could so much go so quickly?

My mother has left the building. She continues to sleep and wake and eat and such, but so gone--she is just so very, very gone. I can speak to her on the phone and I hear her words and she hears mine, but her words are fibs and my words are...forgotten. That quickly.

Mom, BRHB made it onto his blah blah blah team. It's a big deal.

pause. pause. PAUSE.

Uh huh.

It's a big deal. We're really proud of him. He wanted me to tell you.

Tell me what?

(repeat big deal news here)

Oh.

pause........pause.....

I'll get your father.

No, Mom. I'm telling you. It's okay. Just tell Dad for us, will you?

Oh. Okay.

pause....pause....pause....

Lah?

Yes Mom?

What did you tell me?

And there you have it, Ladies and Gentlemen.

In another time, I will tell you about the mammogram I had to have yesterday because of the oddish mark on my right breast that didn't seem to be doing much of anything and could be orange peel-y, I don't know, and also could be a rare and aggressive form of breast cancer (unlike those really passive breast cancers we keep reading about) and how I looked on my children's sleeping heads and held onto my husband's hands and how I wanted my mother so terribly in that time that I thought maybe I would finally inch my way over the edge, that edge I'm always bitching about being so close to. I am fine, the mark is nothing more than the thump of a child's head on my chest, or the itch of cheap lace--anywhere else on my body and I wouldn't have even noticed the damned thing, you know how that goes. But this time, and for how many more will I reach for that which is no longer there? I never considered that I would be mother and motherless in so brief a time.

Just a pause.

Migraines are Just Little Peeks into Crazy.

Mine are, anyway. I become "emotionally labile" (read: needy/bitchy/end-of-days predicting/turn-on-that-light-and-I-will-re-circumcise-you-with-my-pinking-shears lunatic)


Honestly.

These horrid things build up like hurricanes off Florida...takes three, maybe four days to hit the actual headache part, but in the meantime, I'm cold, nasty, achy, weepy, queasy, photosopic (??) and so forth. Lots to occupy the time. Flashing lights...halos...anxiety...by the time it hits shore, I've already terrified the kids and alienated the husband. Sorry kids. Sorry husband.

(then, of course, there's the "I know that I am now actually becoming my mentally unstable mother" moment in my own heart, so Sorry lah as well)

How can there even be episodes so horrid, so out-of-ordinary, so physically, mentally and emotionally all-encompassing without some sort of terrible diagnosis, other than the diagnosis of migraine and migraine related conditions? My gosh.

It's day umm...five of this storm. The headache hit early yesterday. Today I will keep the sunglasses on and avoid triggers. Tomorrow I will figure out how many trees I took down and whether the power is back on.

I hate cleaning up after the storm.

Is This the Circle of Life?

An old friend reminded me that, at one time, and many, many times, I would not sleep more than three or four hours a night.

True dat.

But that was dreaming deferred for parties and clubbing (???) and No-Doz fueled all-night drives to the beach and getting thrown out of bars and...anyway, you get the picture. Oh, and there were police chases. Not many, but I would be remiss if I didn't mention them. Okay, maybe three. On the outside.

But my God, that was a century ago. Am humming Annie Lennox tunes at the thought. And I was not tired. I was not a mother or a wife. I had no grey hair. Had very little hair, as I recall (think A. Lennox/Joey Heatherton hybrid sort of 'do. Pas Pretty.) I am sooooo much older now. So much mommier now. So much greyer now. And wifier, almost forgot that one. Very wifey now.

Anyway, she seemed to think that this was a circle of sorts.

I think she is full of shit.

Oh, this is really too much--

I can't remember how to edit that last post. Just staring at it dumbly. (Whaaa?) Nothing big, just some commas and junk, but I cannot remember how to do it.

Probably shouldn't be driving my five speed, don't you think?

Anyway, sorry for the errors. If sleep comes before madness I will take care of them.

I wouldn't hold my breath, tho, it could go either way.

Take This with a Grain of Ambien

So I have fallen. Way down deep in a pit of insomnia. Been three weeks...maybe five...gets fuzzy after a bit. Been through six (or maybe seven?) different sleep meds. I am Rasputin. Seriously, my poor doc says it's starting to keep her up at night.

Ummm...where was I?

Oh, so I fell asleep at 5:30 a.m. one day last week. Some nights couldn't say whether I've slept or not. I'm trying so damned hard that the line gets blurred. My eyes are on fire. My balance is shot. My muscles ache. White noise. Open windows. No clocks. Pills, Pills, Pills. Ugh. I'm embarrassed to keep "mentioning" to my doc about this--like it's some sort of character flaw. Well, I suppose it could be characterized as such if you can imagine what it does to my already-shaky mothering technique. Noises are too loud. Lights are too bright. Every person placed on this here earth pisses me off. Just because.

I cannot imagine what my kids must think. Or worse, lol, what they must say about mommy sleeping...that's an old story, no?

My doc is thinking about hospitalization. Great. And so convenient. That's in the short term just so I don't lose my mind prison-camp style. Then, a sleep study. Another convenience. (see, I'm a teensy bit pissier than usual--it's okay, I know it's true) But look--what happens if you pay the huge copay, go into the sleep study and then don't sleep? It could happen. Pretty much every freaking night of my life it happens, but I'm not paying big bucks for it. They give you sleep meds, but please not my admission of Rasputin-like resistance in this area. So do I get my money back? And also, what if I do the study and the recommendation is beyond reasonable (for me, for my life) implementation? A big machine? Or wait--less stress? Yes, okay. I will do less stress. (oh God, I will fall down and die if that is the recommendation, really--you watch and see.) Maybe some life changes? Oh yes, I would like another life please. Thank you. One without dh's work sked, one without autism, one without dementia, one without loneliness, one without depression. And may I have my career back? And my body? And my self esteem? Yes please and thank you.

Oh, so that's not what a life change is?

Damn.

Never mind. (I can't recall what what I was saying anyway.)

My God, I am so tired.

Not a Good Sign

Maybe this is just me, but is there a set time when we finally realize that we're nothing special?

I can't speak for you, because you may well be (and probably are) something quite special.

This is my blog, tho, and I am just now figuring out my personal and absolute dearth of specialness.

I'm too damned old to hurt like this.

That Which Grace Does Not Erase

Am not complaining. Am simply noting, for the sake of those who may be misinformed, that Grace does not erase exhaustion. No sir, it does not. And again, I am not selling Grace short, because it saved my tattered old ass, but gawdern, I am one tired piece of nothing sweet. Like there is thunder riding on my shoulders. Like my blood is full of very, very wet sand. Or maybe one of those morning baby pee diapers--you know the ones--so heavy you totally miscalculate the trashcan toss and it fwaps the floor and you just know that such mass does not exist without some sort of damage. (How gross is that? but in no way hyperbolic. Sad. I know).

Perhaps I will start taking care of my old self again. No promises, but you know. Perhaps I will shield my eyes and go into the sunlight and that awful sandy/diapery wetness will begin to dry a bit. That would be more Grace, now wouldn't it? Perhaps I will overcome the distance between the compost pile and the vegetable garden without needing gatorade at the clothesline. That would be so cool, so freaking cool.

Yeah, I am still so topped off with worry and stress that I can feel the bubbling in my head. We have economy issues, house issues, health issues, co-pay issues, marriage issues, schedule issues, what-about-me- should be-thinking-about-graduate-school-by-now issues (that one is mine alone, btw) but I think that for tonight I will focus on the compost to garden thing.

Baby steps. With Grace holding my sticky silly little hand.

And with Grace comes Humor

We have a mirror in one of the gardens--not like it's Ladew Topiary or anything, but since more gardens=less mowing, we have a lot of gardens and one of them has a damned mirror in it. There. Now we all understand.

Anyway, I'm looking out the window watching LRHF doing the LRHF show in front of the mirror, it's a saucy blend of current events, topical humor, and Blues Clues references (seriously, I have no idea what it's about but I'm pretty sure that's what he thinks it's about. ) And he's got a pad and pencil on the picnic table beside him. And he's looking in the mirror saying, "Clap LRHF. Clap. " First, he'd model the behavior and then he'd request it of himself. For freaking heaven's sake the boy is playing ABA therapy on himself. He'd run a trial and then make some notes on his pad. Get very pleased when he responded correctly. Rather stern when he didn't. I thought I'd fall down. He's pretending to be his doctor, for crying out loud. I can't even say what this means, but I find it oddly sweet and just chock full of higher level thinking. So I can't complain.

Well, not about that, anyway. You know how I am.

There is Grace

Oh....Amen.
That Hand of God is really something. As busy as God must keep Himself, He stepped down to me. He laid such Grace, such bright shining glorious Grace before me that I cannot yet even think or speak. And you know that it must be a God thing if I am speechless. Thoughtless comes around pretty regularly, but speechless is like Haley's Comet.

I know that my tattered old sticky bits of soul aren't worth the carbon they're wrapped in, but my son--he is more than worth it--he is freaking worthy.

Aaaaand so

My father said yes.

My son is a proud Hope owner now, and I think maybe he might let me use it too.

Oh, Amen.

Please Leave a Message at the Tone

Had a drink. Ran over the annotated notes. Ran over them again. Had another drink. Not big drinks, just, you know, drink drinks. Thought maybe I should practice on someone first. Decided that might take too long and the anxiety might get pushy with with drink(s) about who was the line leader.

Called Dad.

Got the machine. Left veeeeryyyy sloooow and wellll spaaaced messsage so he could get to the phone...(cordless phones give you brain cancer, you know)

Nothing.

Ah well, I'd hate to have nothing for tomorrow, right?

The High Cost of Hope

Please don't misunderstand me.

This is a break in the clouds. This is handpicked by God for LRHF. Excellent therapies with excellent outcome. Intensive and on-site. One realistic and remarkable doctor overseeing a hand-picked therapist working big-chair-to-little-chair with LRHF because, because, because LRHF, my beautifullest most blessingest baby, wants to come out and play. And that's not just me mommy-talking. That's what the smart folk think.

This is what must be, what is necessary, and what will work.

This is what will cost $32,000.00 a year.

(Do you hear that? that's my insurance company still laughing, or maybe just pissed off at that last post--the one where I got a little pissy w/them)

As I say, don't misunderstand me. This is a good deal. Seriously. This is the best I am going to do to achieve the best for my LRHF.

But Holy Freaking Batshit (sorry Jenny, but you know you're thinking the same thing), that's a lot of money and Hope is not something that will ever, ever go on sale and even if it did, what child should wait? Not mine. I mean, not yours either, but definitely not mine.

So then, oh yes Lawd, I will sell my second-rate soul. And you would do just the same if you had a LRHF.

Yes. You know you would.

And now I am collecting data and research on this therapy and this doctor and the exponential relationship between frequency of therapy and successful outcome. I am practicing my bestest wordiness to explain to my father that this is Hope. This is the means by which his grandson will have his path eased, even just a tiny bit, one less pebble, one less hill. This is all I want for him--I cannot want what I don't know, but I know that I want this Hope.

Umm...I've never done this before, btw. Asked (well, begged really) my father for such things. Was not raised this way, was not entitled. We've discussed the possibility, but it involved what is essentially LRHF's education money, not my father's damn-well-as-I-please money. This new thing never crossed my silly mind. Until I had a LRHF. And some really sad projections about plasma donation.

So here we are. And I think, I think that with the Hand of God on my back, I can do it. Or He can get me up to it, because don't think for a moment that I don't know Who is really pulling me out of the puddle for this. I think, too, that it is oddly possible that this same Hand will move over my father's heart for this child he's seen twice.

No matter what I think--I can do no other but ask. (Seriously, God, just how many flavors of scared do You make? And who knew there'd be such a freaking buffet?)

And girding that 32k Hope is this sticky whispery prayer--

Keep Your Hand firm at a mother's back, soft on a grandfather's heart, and forever on a little red head.

How Lucky Can You Get?

I am just so darn envious of the Mamas who work for health insurance companies.

Seriously.

You see, none of those Mamas have a child with special needs. I know. Can you believe it?

But it must be true because they are Mamas. And if even one insurance-company-working-Mama had wept over her child's harder, slower time; if even one insurance-company-working-Mama had worn ruts in herself thinking that surely she did this thing that harmed her child, if even one of these Mamas had a child with special needs, or even if they knew a child with special needs, those Mamas would surely fix the insurance thing so that the child got treatment--early, affordable, and appropriate treatment.

Mamas are like that.

Yes. Yes, I do know how the world works, but This is My Son and He is Five Years Old and He Deserves Treatment.

Come on now.

So Then He Says,

"maybe you should get a job."

I Got Nothing

Just don't know anymore. Is it that I am wading deeper and deeper into this muck and will soon be sucked under? Am I grieving? Am I weak? Selfish? (if you must respond, go with rhetorical. I am rather taut just now.) When did this pall fall so hard?

Like I said, I got nothing. Don't know. Am concerned.

Started crying last night just thinking how it was--before LRHF's dx, before Mom's decline, before dh's schedule made my days bottomless holes full of little boys who need me, but get--but get a me so tired, so freaking tired that I am either dumb or I am screaming.

"Every day hurts," I tell dh, "I dread every day."

There's no medicine for this shit. No SSRI combo will take away his schedule, our stress, my grief.

"Well, you still sound depressed," Doc says.

Yes. Yes, I am still depressed.

I cry. I scream. I have nightmares. I don't know how to do anything else. I ache. My bones are concrete. My nerves are spun glass. What color is joylessness?

Jesus, this is how it is. This is not a bad day, or a bad week, or a period of sadness and/or hopelessness lasting more than two weeks and please consult your doctor. This is it. I don't like this it, but no one has asked f0r my opinion. How did I get so tangled up and torn?

If I could say, "Oh, _________ will end...Oh, once ___________ happens, it will get better, Oh I just need to get past ___________," that would be a different kind of woe. This is woe without end. (amen).

"What would you change?" Dh asks.
"Nothing that can," I tell him.

Laundry piles up. People say that laundry isn't a big deal. Let me tell you right now, that it is a very big deal if no one has socks at 7 a.m. Shopping doesn't get done. "I will shop," Dh tells me. Sometimes he does. Sometimes. Dishes congeal. No one cares, people say. I care. I am here and it is my job and it still doesn't get done. None of it. This is the job I chose, and this is the job I would sooooo lose in any other sector. And it pisses me off that I can't get to anything anymore. Nothing necessary gets done and so nothing soothing gets done. No dirt. No quilt. No painting. No bread making. And I am always screaming in my head. Or at the children. Which is the greater sin? I got nothing.

I tell Dh that he and the kids deserve better. They do. Really fine people, all of them. And I am failing them.

"Go away for a week," Dh says. "Take a break."

And come back to...done stuff? I don't think so. I did not fall off the Mommy Truck yesterday and I have "taken breaks" before, and believe you me, you pay for those breaks with loan shark level interest. No thanks.

It's not like I had years of fairy-dancing in flowery meadows before all this, you must know that, right? My real job stressed me out. My heart got broken a few times. I got lonely.

But it wasn't like this. This frightens me. I want to turn away from all of it. All of it. Like Anne Sexton.

Please know that I won't. I would never. I have been one of the left-behinds. And also I am devilishly selfish about my children and husband. But I must say that I sort of understand the concept now.

Just Waiting on my 30 Pieces of Silver

Submitted my super (and completely un-) secret documentation of mom's visit to her doctor as directed. Or, rather, I emailed it to my dad and he submitted it because I just couldn't send all that crap directly to a stranger.

You see, I told on my mother. Laid out her secrets, one by one, day by day. I kissed her on both cheeks and now they will surely come for her.

It would appear that my mother is only able to function as a result of my father's constant vigilance and well-honed sense of I-Know-What's-Rightiness. It would appear that way because without my father, she is just simply un-able. Unable to what? Well, it's all right there in the document, and frankly, you should probably be on the lookout for a copy because my father is forwarding it around like one of those 'This is Cute' emails. And this, this horrid thing that is scraping my mother away from the inside out, is not cute at all.

She's been gone a week today and my anger is becoming soft and grief-y. Well, you would be angry too (maybe) if you had to hide food and tape containers shut and guard your kids' snacks (vocab: perseverity/eating disorder--elderly onset) and double check the doors and gates left open and listen to endless lies (vocab: confabulation) and accusations that your LRHF stole her watch. And you would especially maybe be mad if you, somewhere in the back of your head, thought that When Mama Comes It Will Get Better. It was not better. It was her making kids cry at the birthday party because she wanted to Huuuuuuuug them. It was her ignoring her beautiful grandchildren unless they were packing graham crackers (vocab: apathy) . It was her describing her father's death (suicide by gunshot, btw) to your children in lurid detail while you did everything but gag her to stop it (vocab: comportment and insight, executive skills). God save me, it was her wanting to pray over LRHF so that he might be healed. Healed. (See prev. entries regarding how he's glorious and I am a mess) I could not bear for LRHF to hear what she might say during this over-praying thing(No vocab for that, but boy, it pissed me off something fierce). It was her no longer able call a light a light or a bowl a bowl (vocab: agnosia).

It was her no long able to be her. I know that. I do. We both know that I am slow at these things. And dh is a bit alarmed because my therapist dared to scheduled major surgery just prior to the visit. Poor dh. You and I, we have danced this dance before, but him, he worries.

And here's the thing: For all that I did what was asked of me, for all that I checked and double checked and worded and reworded to drain every last drop of drama from it, for all that I swear up and down before you and God that yes, it sounds crazy, but yes, it did all happen, and finally for all that I only did it so that she might be treated and thus be Grandma, for all that, I ratted her out. Betrayed her. She is livid and bewildered (when she remembers). Her doctor is, as my dad put it, "pretty shaken." Great. Just Great. I would like to speak to a manager please. Surely, there is someone in charge.

And also, can I get directions to the nearest Potter's Field on Mapquest?

But you must understand, I knew her when she was. When she was giving me her wedding dress as my own. When she was giving BRHB his first bath because I was bloody terrified. When she assured me that "twins are a good thing" and "we'll get through it." When she called me at the NICU when Fuzzy was intubated (5 years ago today) When she cooked and cleaned and ironed and yelled at me to "keep nursing and they'll be okay." These, you see, are just the tip of the was's. Just the ones out in front in this one tiny bit of scribble. There are so many--God, how I do wish that had been my task, handling the was's and not the is's. Because then you would laugh and nod and think to yourself, "Oh, LAH's mama, she was something else, that is for sure."

And she was.

And another thing...

Lest you fret that the I don't know God when I see Him--

Daffodils! Solstice-light Bright Daffodils!

And this--

My boys, my three maddening, quirky, spectrum-sprinkled boys running just to see the flowers.


Seriously, who knew the Valley of the Shadow had Daffodils?

Dear John Letter

Dear John,
How lovely that you should stop by. Counting you, that makes three.

Come on, you had to know it would be interesting. Yes, that's a good word--

INNNNNNTERESTING.

Anyway, welcome, Dear John.

hxhxhL

More Vocabulary Words

1. Confabulation
2. Frontotemporal (sp?) lobe disease
3. Executive Skills
4. Insight
5. Comportment
6. MME for dementia screening

I know, the waiting is the worst. Let me say that I had no freaking idea it was this bad, and you know what damned a ray of sunshine I am.

Seems I can't be left alone for a split second

After LRHF's evaluation, we had a few days to prep for the twins' 5th bday party AND for a visit from my mother and godmother. Not sure exactly what's going on w/my mother as far as diagnosis, but her decline makes Spectrum look positively benign.

Wow.

If you want a headstart on the tone of the visit, look up Perseverity, Agnosia, and Elderly Onset Eating Disorder. And that's just off the top of my head (no pun intended). I don't even know what to say about the constant lying that comes along for the ride.

They really don't make brains like they used to.

A Little, Not At All, Alot

That's how we had to frame our answers during LRHF's evaluation today. On the paperwork, anyway. Hard to squeeze or stretch a kid into that, but I guess we did.

Here's how I demonstrate understanding and mastery of the concept by applying it to a personally relevant situation:

1. I cried---a little

2. I slept last night---not at all

3. The diagnosis doesn't mean a thing between a LRHF and his mama---a lot

So there's more, of course, but it's been a very long and list-y day.

Monday, Monday ...

I do love the Mamas and the Papas. I think that album cover showed them piled in an old bathtub, John and Michelle Phillips, Danny something-or-other and Cass Elliot. Yes, an Album. It was my parents' album and I don't think I was even in school yet. I am quite old, but not that old.

So LRHF has his formal evaluation on Monday. I am terrified. I am 40% terrified that I will fall apart with such alacrity and drama that the evaluators will simply give each other the well, what can you expect look and click their tongues while they write out their reports. The remainder of my terror is simply that I do not know, and no one can tell me, how to hear how autistic my perfect baby is.

You know that there is the unspoken mommying stuff, and then there is the spoken, the written, the diagnosed mommying stuff. The two may well be the same and without surprise, but Oh Dear God, I am barely able to look on the first bit and would rather tear my eyes out that look on the second. I get how that sounds overly dramatic or stupid or nonsensical. I can see how that would be, but just the same, it is a very true thing.

Terrified. Maybe it's really more specifically dread, but "terrified" is the word that rears up in my brain and in my heart when I think about it, and I can't be bothered to stand on semantics just now.

And I realize that on Tuesday morning, he will still be my best and beautiful LRHF, my very, very precious joy, my love's pure light. I know that. I do.

It's just that right now my mommy heart is like that part of Genesis, that beginning part, in the beginning before God moved across the chaos and made light and dark and so forth. There is no reason, no logic, no understanding, but just all-burning ferocity and passion and angst. My lovely Justine gave me the Hebrew word for chaos, and while I cannot remember it, it sure sounded good.

Prayers or meditations or emoticons would be great, but I can't settle on the specifics of what would help. Maybe just that LRHF's Mommy remembers that He Will Benefit, even when She is Falling Apart. Maybe just that. Or that God will flicker across the chaos in that time and LRHF's mommy will be still and know that He is. That would be good too, I think.

No one is in bed yet, so it's too early to sit and muse and wallow. People need juice and chicken and baths and at least I'll be busy, right?

Maybe get my mind off of it.

Monday Monday,
can't trust that day.
Monday Monday,
sometimes it just turns out that way.

Please Disregard Yesterday

Am a huge howl-y weeping mess of mommy AGAIN today. No particular, or should I say new reason. Same old, Same old. Maybe hormones. I dunno.

Dun care.

Burst into tears as LRHF and I tumbled around giggling and tickling and nuzzling this afternoon. This is our favorite sport and sometimes his big ol' Irish Setter eyes will meet my tired just plain ol' eyes and he will say quite simply, "Happy Boy." I can tell you now that there are no three little words that will beat out those two big ones. Ever. But today I cried about it. Not too much, but enough to feel stupid.

So I feel like I might have given the wrong impression yesterday. Made you think I was moving along, getting it together and all that. I am not.

Not. Not. Not.

Not. Not.

Not.


Good damned thing I don't offer a money back guarantee.

Going to bed now.

"Look Where You're Going, Please."

I say that about a million-dillion times a day to my un-laced, un-hemmed, un-inhibited, unruled-by-gravity boys. "Don't fall down," I say. "You're not so clever that you won't trip."

And it's true. Proven time and time, boo-boo after boo-boo, howl after howl--they will fall if they don't properly assess the situation. If they jump or race or slide, small boys tend to go down hard.
Here's the thing I kinda sorta maybe slightly and completely against my will considered yesterday, tho, that has to do with that: Mommies are just the same. If we don't look, if we don't go the necessary route in the necessary fashion at the necessary speed, if we try to get around/go under/race past something, we, too will go down hard and howl.

Now, I did not get this flair for the obvious from my own vast wisdom, believe me. My dad (who, may I just say, is a whole 'nother book of tales and one that fits right on the family shelf, IF you get my meaning...) is trying very hard to fathom this autism thing--to carry it right along with my mother's illness and figure out why the hell they just don't make brains like they used to. And it's not his thing. Really not. From a very early age, we kids got that this man neither understood, nor enjoyed our presence, but what can you do? My point being that he's never been built for this sort of thing and now he's seventy and he's trying. I'm not saying we all didn't and don't pay for what he couldn't do, but same as before, what can you do? (where was I going with this? Oh...) So he calls and he's trying to be gentle (really really can count these times on one hand, but who's counting?) and he's trying to tell me how the situation could be worse. And while every atom and every particle and every fiber in my heart is howling at him because how the fxck could he even begin to...well, we needn't go there, but while there's all this drama in my silly self, something came out of my mouth clearly without the knowledge or consent of my brain. I swear, I did not have it in me until it came out my mouth. I swear. I said to him, "Dad, LRHF is fine. He's great. He's beautiful and happy. I am struggling. I am tired and angry. I am sad. He ( e.g., LRHF) could not be better. "

I know. Totally not me-ish. Please do sit down.

So I'm rolling this around now. I think that sometimes when God speaks to us and we just keep throwing our tantrums, He must get so bloody pissed that He just sort of slaps us. Shuts us up for a darn second so He can think a minute and so He doesn't have to watch us hyperventilate. I think, I hope that those words He so briefly put in my mouth were a slap like that. A holy "will you just shut up and listen to Me for a second?" Because you know how far down in the hole I am. You know I am not handling this at all. You know I am not stepping up.

But.

Just so briefly, I guess I did look up. Heard those strange and not-me-at-all words and I looked up, mostly to see who the hell was talking, because make no mistake, I am very much still very much in that horrid, weak and dark starting place. It sucks, I'm sad and it freaking hurts. No updates in those areas. But I think that God thinks maybe I might not fall so hard or howl so loud (ly) if I look where I'm going.

Can I? doubt it.

Will I? not today.

I do sort of get His point, tho. So we'll see.

How Long?

How long am I supposed to grieve this autism beast? What is the maximum allowable time in which to cry and kick and yell? When does it soften at the edges and become workable, liveable, prayable? Where is the day when my heart will not break fresh more than one or two times over this?

I want so badly to function. To get on with making it better, helping him adapt, seeing the half-fullness of all this. I know that this grief is selfish and not the least bit helpful to anyone. I know. But damn, I look and look and it is all I have in me right now. I see baby pictures and it hurts. Is that where it happened? Was that when I could have done, should have seen, something? You know, his brother, his twin, almost died at ten days. He caught pneumonia and was taken by ambulance to the NICU. Did I catch it? No. My sister did. Nice job, Mommy. Now, mind you, what the docs originally thought was mottled skin was actually his port wine marks, but still, he was sick, really sick, and I didn't grasp it. Also, mind you, he caught the crap from my sister's kid, but still. So I worried about him, That Little Fuzzy Headed Fellow. I used to rock him and worry that there was some horrid future fallout from all that because I had a bad feeling down deep in my mommy gut. Turns out that the bad feeling was just directed at the wrong crib, the wrong little fellow. Damn.

And yes, I talk to people. Probably talk to them until they wish I was the one who doesn't yet have spontaneous language. And these people use phrases like "fortunate to have a mom like you" and "good parent" and "not your fault" and so forth, and it means nothing to me. Every day, fresh as bread from the oven, I grieve.

My flaw, I know. I have to step up, I know. But Lord be gentle, I can't even look up.

How Long?

"Can Your Boy Dress Himself?"

That's a reference from the King of the Hill where Bobby takes ADHD meds. Because I have to say that most of my boys can dress themselves. Really. Mostly.

Okay, sometimes.

Anyway, Oldest Redheaded Boy started taking ADD meds yesterday. And aw hell, I hate that he does. I'm sad that he does. And daggit, I know better. Back in the day, I worked with ADD/ADHD kids. Truly, I have walked with the medded and the un-medded and the should-be-medded and the forgot-their-medded and the always exciting it's-my-rx-but-my-parents-are-now-medded and I know how it works and that it works, but now he's the medded. And he's mine. So you see how it is.

Yesterday we noted the therapeutic benefit during homework time. Later that evening, he prepared and delivered a lengthy presentation on the sinking of the Andrea Doria to his 4 year old brothers. He closed the presentation with a field trip to the bathroom for a tub-based demonstration of the tragedy. (did I mention that he's a very intense, if unfocused fellow?) He did not spend the evening working on his train/plane/boat/car crash noises. He did not do much in the way of twirling (I don't even want to get into that, but please understand that it was nice not to have it for a change) As a result, I did not spend my evening screaming myself silly, knowing full well that I cannot be heard over the medley of train/plane/boat/car crash noises. So I have to ask: who benefits? Who needs him to be medded? (whispering) Is it me? Is it my problem (read: fault)? Shoddy, shoddy parenting. (normal writing voice) Yes, I know the grown-up answer--we were referred to special people who use special tests and stuff to figure out those answers, and any other kid, any other kid and I would be all about this stuff, but like I said, he's mine. He's a crazy, maddening, obsessive, quirky, bossy, loud, spazzy kid, and I hate how this it's-been-a-long-day-for-the-last year-or-so situation wears on me, but I have to tell you that I still feel really crappy about dosing the kid up on schedule IIs like this. And having to fight with the insurance company about it. That is totally bonus. Oh Please let me give my eight-year-old kid the addictive psycho-stimulants? Oh Please? I know you nixed all that speech therapy and other stuff we asked for when he was younger, and I also know you're completely screwing us on That Little Redheaded Fellow as well, but pretty please?

*sigh*

I know. This is not as huge as I'm feeling right now. Maybe not. And yes, I do have professionals with whom I share all this obsessive mommy guilt. I know.

And you know what else? Right this very freaking minute he is in the living room twirling around and working those awful (if impressively realistic) crash noises that make me want to rip my ears off. So I don't know. I just don't know.

Boys who Believe

So I'm taking the tree down and I'm always sort of glad to be done with all of it--Mommy can only take so many games of Ornament Hockey and Tinsel Toss, but this year, I feel bad. Sad. Teary-sad. And not even for one of the standard and previously stated reasons. I wonder how much Santa is left for us. How much sweet and open awe will survive another year? And worse, how much did I miss/ignore/bitch about this year because of the generally crappy way things are right now? This all sort of came out of nowhere, really. One minute I'm unhooking fake tree limbs and the next I'm trying to hold back time. My sweet boys. Maddening, quirky, sticky-sweet boys. Boys who drive me to frustration and anger and worry and sometimes despair. Boys who won't/don't/can't fit a mold or even a diagnosis. But they're boys who believe. Really believe. And I know I did not revel in it this year. I did not respect the magic of the children. Everything got in the way and I did not consider how ephemeral that magic is. Oh, I hope my boys hang on for another year. Just one more year. I hope with all that's in my beaten-down self. I promise I will be good and I will be patient and I will ponder it all in my heart. I won't let it be crappy day to crappy day existence. I won't. I will look for the light and the joy. I will be grateful for what my boys can do and not despair over what they might not. I really will try.