Millions and Millions of Mommy Months and Myriad Milestones

That's how much time has passed and what has happened since my last visit to Lahlahland. I know. Most of you have managed to self-regulate perfectly well in the interim, and for that, I say "high five!"

There's more to say, of course, and always.

Always with the saying, you know how I get. Mostly okay-ness, or at least used-to-it-ness, but nothing is that simple, no?

So we'll talk soon. I promise. How better to pique your interest? Yeah, right.

hxhxhL

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.