on chaos and the wisdom of turtles

Today has not been a good day as a special needs mom.  Hunter has been dealing with some health issues lately.  I'm not sure of the cause (though I suspect food/environmental allergies) but I can't help but see the toll it's taking on his personality.  Something I can't identify has been stealing away his energy, his spark, his sass.  There's been a lot of staring into space lately, a lot of repetitive banging of the same two toys together, a lot of sitting, mouth open, in the middle of a group of kids, too overwhelmed by their activity to take part.  In other words, a lot of everything-I-am-most-afraid-of-about-Down-syndrome.  I don't know what's going on but it's kinda scary to see my little boy's personality slipping away.  


The whole thing is probably made worse by the endless stress in our lives.  The nanny job I hoped I had lined up in Wisconsin just fell through, leaving me with dozens of applications, a handful of interviews, and nothing definite.  On top of that I have to find housing, figure out whether our ancient van will survive the journey,and all the other details involved in moving across the country.  Oh did I mention continuing to work extra hours on top of it all? and handle every other details of life?


I'm exhausted. Scared. Terrified this is the wrong decision.  Terrified of making another the wrong decision on top of the wrong decisions I've already made.  I'm not sure if I can make a right decision anymore.  Add to that the crushing questions of how am I going to go to work, have a full time job, pay my bills, go to school, get good grades, graduate, work another job - all while taking care of a special needs child all by myself.  How am I going to give Hunter the care he deserves? the life he deserves - all by myself.  It's a boulder pressing on my chest, pulling out my back, crushing my shoulders down.  


Anyway, today I had to return some (unwatched) movies to the library.  After missing an appointment at the pediatrician's, I loaded a hot and cranky little boy back into the un-air-conditioned van and headed downtown, planning to drop the movies in the drive-thru box and return home at once, spending as little time as possible in the 95 degree heat.  But when the van bumped over the parking lot entrance, I looked at the squat brick building and thought about cool air conditioning.  (Yes, it is THAT hot that instead of planning my errands around efficiency I plan them around air conditioning.)  I swung into park and headed in, the heavy bookbag thudding into my knees, my shoulders tight with frustration and anxiety.  My fingernail picked at the label of the DVDs as I stood in line to return them.  


Then, as the air conditioning washed over us, I hesitated, then half-without thought stepped out of line and wandered into the non-fiction sention of the library.  Hunter wiggled and squirmed to get down so I plunked us both down on the carpet.  He promptly threw up.  I wiped it up and laughed a little as he grabbed at the rag.  The tension between my shoulders eased as he turned his attention to a large book on the shelf, and I realized it was the Encylopedia of the Horse, an enourmous weighty jewel of book filled with facts and photos.   It was my favorite book as a child.  I helped Hunter haul it off the shelf and turned the glossy pages for him to see, a bit nostalgic as memories of previous readings returned.  


After a bit we selected a few items and headed back to the checkout - but once again I stopped.  The door to the children's room was open, and I caught a glimpse of the big aquariums in the connection hall.


Once more on impulse I headed in.  I shrugged my bags to the floor and stacked the books nearby, then stood Hunter up against the glass.  A school of minnows glittered over.  Hunter cooed in startled delight.  He flattened his hands against the glass, making sweat-sticky palmprints.


Then slowly, from behind a rock, three turtles swam over.  They hovered, barely moving, their noses bumping the glass.  Babbling, Hunter leaned forward till his sweaty nose bumped the glass too.


The angry simmer of anxienty in the back of my head hushed as I watched the turtles swim slowly to the surface, breathe deeply, then dive low again to watch my son through their never-blinking eyes.  Hunter smashed his face up against the aquarium, pausing only long enough to look at me and exchange a quick this is so cool! grin.


Perfect stimulation, my therapy brain thought.  "Turtle, one, two, three turtles" I said, reinforcing the information.


And as Hunter ignored me and chattered to the turtles, I closed my eyes, pressed my face into his fuzzy head, and dared to think The Thought.  


What would my life be like without Down syndrome?


What if I had a typical child, with designer JEANS not GENES?  What if thoughts of therapy and stimulation weren't flitting through my head, and instead we'd be just a mom and a kid watching some turtles?


Then it hit me.  If Hunter didn't have those special genes, we wouldn't be watching turtles.  We'd be in that hot sticky car.  I wouldn't be sharing a moment of wonder with my child - I'd be changing lanes, my mind tangled with the long to-do list to be completed at home.


And that's when finally peace entered my heart.  Yes, it's been a hard week.  Yes, being a special needs parent sucks much of the time.


But not all of the time.  Hunter's challenges add a new dimension to life, a slower, more peaceful dimension, where I spontaneously squat on library carpets and read my favorite books to my kid, where we pause to take stock of our blessings.  Where, like turtles, we move slowly, breathe deeply, and take in the world through unblinking eyes of wonder.


So guess what?  The rest of this week, I'm going to try to slow down just a bit more.  To appreciate how awesome my kid is RIGHT NOW, not how awesome he was a month ago.  When I hit post on this, I'll go wake him up just for kisses and hugs.  


And then, we'll probably head to the beach.  There's only so many more sunsets left.

Upside Down World

Wow.  It's been six months since my last post.  Feels like a lifetime or two ago.  

On February 2, 2012, I became a single mom.  I don't really want to go into details now.  I may or may not at some future point.  But suffice it to say what happened was beyond my control.  In a way beyond his control too.  Being a single mom is not a choice I made, but a path I was forced to take.  I'd like to say I made a quiet, firm stand and chose a better life for myself and my son, but in reality, a bomb hit my world and I'm still digging my way out of the dust and rubble.  I'm trying to find the surface and the sun again.  Sometimes I get little glimmers through the dark, but as yet, I haven't found it.

After a lot of thought and prayer Hunter and I are headed back to Wisconsin at the beginning of July.  I'm really happy to be headed back to apple trees and autumn leaves and freshwater streams, to family and the smell of home.  I'm really scared too, as I'll be leaving my nanny job that I love and the life I've built here in Florida for new unknowns.

Goals, present and future?  Find another nanny job in Wisconsin, find affordable living and get settled with my munchkin.  After that, school, specifically nursing school.  

Everything in this new life is strange.  I feel like an avatar on Pandora.  New body, new world.  Nothing's the same.  The colors are different, sharp and stark.  The sounds are unfamiliar and startling.  

Only one thing's the same, and that's the mommylove I have for my little guy, my Mr. McScooty.  We had a newsflash of national importance last week, containing four crucial words:  WE HAVE FORWARD MOTION!  Somebody's mobile and crawling all over the place.  He isn't strong enough for hands and knees yet, so he scrabbles and kicks and flaps his arms forward, exactly like a baby sea turtle flopping across the sand toward the waves. When I come in the room, he clambers over to me and then throws himself across my feet, patting my legs like a puppy begging to be picked up.  It's heartmelting.

There's a lot more to say, but little time before midnight, and after three nights of Hunter wanting to wake up and play at 3AM, I need some pillow time.  I'll be back.  With any luck, sooner than six months later.  ;)

In the meantime, check out this cuteness.  Yes, I do have the most adorable baby in the world.

Guess What? We're Back!

Wow. It's been months since I posted an update here. This blog is spotted and smirched with cyber mildew from too little use!

Reasons why I haven't updated: too many to list! Primarily lack of time. Today is the first day in a very long time (ie, since the last blog update) that I've been able to make it to the library (my only source of computer web access) longer than the mad dash in to return books and DVDs.

Anyway. Lots have been going on in our little corner of Florida, but before I post a recent update, here's an update I wrote at home about a month ago!

(written sometime circa November 30)

I have NO TIME anymore.

Forget Daylight Savings. Can we please invent a drug that replaces the need to sleep? Either that or put a lot more than one extra hour into the day...

I don't know exactly where all my time goes. Sucked into the fire-flash of the Time Vortex – or wait, that's Doctor Who...

I'm jibbering. Enough.

For not having any time I've managed to find quite a few spare seconds (and minutes, and hours) for worrying about H-man. Some wise mom in blogland wrote that life is enhanced for special-needs parents. Our lows will be aching, crawl-under-the-bed-and-cry lows, but our highs will have us winging over the obstacles like triumphant eagles.

I've been under the bed a lot lately, but I've also stretched my wings.

There's no particular reason for the lows... Hunter is still doing fabulously. His five month birthday on December 6 is dashing toward us, and in the last month my munchkin has mastered:

1. Rolling! Backward, forward, clockwise, counter-clockwise, any ol' way you prefer. He even showed off for his therapist, and she confirmed his proper form and nice control. Yay! One more milestone right smack on time.

(2) Hand skills! Just today he showed me how "handily" he passes toys from hand to hand, and finished by grabbed the mail from me and crumpling it nicely. He also broke his first dish the other day, when he grabbed it from my hand and flung it across the room. Thus begins a long and infamous career of smashing stuff!

(3) Overall core and body strength. He's able to easily pull himself to a sit by grabbing our thumbs, and he's constantly pushing himself upright in my lap. It's so exciting to see him gain control of his body.

(4) Social skills. Mr. Flirt has always been socially precocious, but he's really gaining lately. He understands humor as well as all the other emotions, and carries on delightful conversations with me. Perhaps his replies are limited to "Oo-ga" and "Argh!" but he puts such inflection into his talking! :)

Perhaps the reason I've walked around with a lump in my throat lately is because I expected life to be so much harder. Life with H-man is a joy, a thrill, and a privilege. I'm thrilled to be his mom, and if this is all Down syndrome has to throw at us: well, BRING IT ON is all I can say!

Deep down, though, I know we've been very, very, very blessed. Last month I cowgirled up and headed to our first Buddy Walk. Don't know where I found the guts, but they got a pretty good pounding that day. Each time I saw a toddler struggle mightily to walk (or crawl) or the frustration in the teenager's eyes as he tried to force his tongue to speak clearly – a fist socked me square in the stomach.

So many families, so many kids have it so much worse than we do. Their reality is hard, and they've had to find acceptance on a much deeper level than we have.

Perhaps that's it. Even while I thumb my nose at Down syndrome I'm scared. Because we haven't walked the dark side yet. We haven't sat outside an operating room, or waited months for every milestone. Fear only found a temporary stay in our hearts.

I think I'm sitting here waiting for the next shoe to drop, waiting for the day Down syndrome decides to make itself known in our lives. And I'm scared. If the other shoe does hit the floor, will I be able to cope? Will I find acceptance?

Will I be able to find this much unquenchable joy in Hunter even if he doesn't progress a day further in his development?

I think so. I hope so.

He just looked over and gave me his cheeky one-sided smile. Oh, I've still got a cold spot in the pit of my stomach. But the love in my heart just keeps burning more and more.

All that I know is that I have one AWESOME little guy who's rockin' this world like nobody's business, and I'm so excited to be setting out on our adventure together.

And here, cuz I know you want them, are some recent-ish photos of my guy!

Words, Words, Words

The other day I happened to scroll through my history of online activity and realized that all, ALL of it for the last six months was baby-related. Including this blog, which has been nothing but baby gurgles since Hunter's advent! That might possibly have something to do with the fact that since the sixth of July, my life has been nothing but baby gurgle. Baby gurgle and flour-soft baby skin and downy dollops of duck-fuzz hair and liquid blue eyes and wiggly monkey toes and lots and lots of dirty diapers.

Babies are a lot of work!

Sorry to all you moms who just snorted your coffee all over the place, but yes, that actually was a surprise to me. I did not expect the intense level of total involvement a baby needs! Granted, Hunter has a fairly high-maintenence personality, is easily bored and prefers lots of face-to-face interaction (he takes after his daddy in more than looks), plus special needs subtracts from your available time, but still! Of course, it doesn't help that I have the cutest baby in the world and I very much enjoy bragging about him.

Anyway, hope everyone likes constant baby updates.

(insert flurry of baby pics)

The only non-baby thing in my life at the moment is NaNoWriMo – which YES I was insane enough to attempt. I can see right now this ain't gonna be a 100K year. Won't be 50K either. Heck, I probably won't type my way to 25K. I knew that before I rattled out the first word, though. And it's not the point. This year NaNo is about me starting to write again.

Writing is a lot of work!

Don't be snorty this time. Writing didn't used to be work. 2009 I happily typed out 100K + and had a ball the entire time. Somewhere in the insanity of 2010 my deep, delicious resevoir of words which I took for granted dried up. Words don't wash through my mind like the waves of Lake Superior anymore. Now they hide out behind palm trees scattered in a very dry desert. I stalk them endlessly, frustrated and tired before I catch a half dozen. I found my pair of Vision Decoders the other day, which are a magic invisible pair of spectacles which, while worn, allow the wearer to constantly process what they see into words. I'm so excited at wearing them again! When you subconsciously convert life into words, everything is so much MORE – because you have to think about what's happening. You have to become conscious of the temperature of the wind, of the smells it carries, of the feel of it when it hits you. You have to taste all the flavors in the bite of marinated chicken, biting cautiously to determine texture and consistency. You have to really look at a sunset, discovering all the colors of the rainbow in the strip of last light over the ocean.

Even though the words rarely make it to paper (or the computer screen, for that matter) they're back in my life.

Happy Realization

I sat at the dining table the other day, munching down on an egg-yolk-soaked bagel, when I stopped with the bread an inch from my mouth. I wasn't sad. The realization made me stand up in excitement. I wasn’t sad! I was having an ordinary morning! And I hadn’t though about Down Syndrome for hours.

It’s the strangest thing. No, I certainly haven’t forgotten about Hunter having DS. I research many times a day, looking for therapy ideas, nutritional intervention, any way to make his life easier and better. (I’ve found some extremely hopeful ideas too!) But my outlook on it has changed completely in the last four weeks.

I think I’ve really accepted it, for one thing. Hunter does have Down Syndrome. I believe, for a while in the back of my mind I still thought the test was wrong. Now though, I can recognize it in him: in the almond-shaped eyes, the insignificant brows the mild low tone in his upper body. (He has no other physical features.) The amazing thing is that instead of being dismayed, I’m ok with it. I actually think the facial features make him cuter! He is exceptionally cute, anyway: people who have no idea of his Ds comment that he’s the cutest baby they’ve seen. Even artists comment on the perfection of his features.

I still remember the day I really saw the DS in him. I also remember my emotion. Not fear or repulsion or sadness. Instead, it was a sort of relief. Oh. He does have some features of Down syndrome. So what? I still love him. He’s still super cute.

(As a side note, I’m delighted to discover that the DS stereotype look is just that: a stereotype. People with Ds are all shapes and sizes and heights and weights and levels of beauty or handsomeness, just like typical people.)

This is not to say that I love Down syndrome. In fact, I hate it. I know it’s going to make life harder for my son. I don’t for a moment think that chromosome and all its troubles defines who my son is. He is Hunter, who happens to have Down syndrome, just like he might have had spina bifida or cerebral palsy. I’m excited at the research being made to alleviate many symptoms of Ds. I’m thrilled that there are many ways to help already and that there will be breakthroughs in Hunter’s lifetime.

I don’t love Ds. But I do love my son, and I’m ok with it. I still have moments of panic, but they’re related more toward my fear of not doing enough to help him. Those gut-wrenching, heart-stopping moments of devastating sadness, why my son? why this heartbreak to us? are almost completely gone.

I can’t believe we’ve come so far. I credit it first and foremost to God, secondly to my husband, and thirdly to family and friends, new and old, who offer unconditional support, humor, advice, and cheering. And beyond them, I credit it to this wiggly, demanding, incredibly cute bundle of personality named Hunter.

I'm Driving My Son Crazy

"Hi Mom!"

"Are you taking photos of me again?!"

"I hate it when you point that thing at me!"

"Fine. I just won't be cute. NOT. CUTE. AT. ALL."

"Maybe I can sneak off when she's not looking..."

"Nooo! No MORE PHOTOS!"

"Fine. I'm just going to sulk."

Can You Say "STRESS!!"

Life has been a bit stressful lately. Translate “a bit” “as insanely outrageously” and you’ve got an idea of what I’m saying.

Why? Where to start!

First of all, the Jeep (our only vehicle) decided to break down last week in every way a vehicle can break down, with a grand finale of a blown engine. This dandy development means we are vehicle-less for at least a month. Now, please understand. This is not quite as desperate a case as if we were still living in the wilds of Wisconsin, where a vehicle is the only thing between you and starvation. (Unless you can walk 30 miles. One way. Or enjoy raw venison with a side of toadstools.) Tanner can get to work. I can (with effort) get to the grocery store. But that is it. No beach. No library.

Cabin fever, anyone? The temperature is rising.

Add work problems, post-partum depression, and a cancelled vacation to that, and you got stress.

The real extent of the stress slammed home to me the other day when I woke in the night, reached over to touch Hunter, and found his little body limp to my touch. Panicked, I grabbed him, only to have his flaccid body slip like water through my hands. He fell into my lap like a ragdoll. Every muscle was loose. Even his toes were floppy! And his breathing was so shallow that I stayed up until daylight, watching to make sure he didn’t turn blue.

By daylight, Hunter had awakened, demanded food, and seemed to have returned to normal. Not taking that for granted, we borrowed a car and ran him to the pediatrician, who send us to the ER with a script for “life threatening events.” If you’ve never been handed a piece of paper which says that your child has experienced a Life Threatening Event, I hope you never are. There’s an odd sort of panic that slowly clenches around you until you want to race to the nearest doctor with your (perfectly normal-appearing) baby in your outstretched arms yelling “DO SOMETHING!!!”

Anyway, long story short, the ER folks were clueless as to what had caused the incident. The doctor’s best guess was that he had been suffering from long-term stress and had gone into a deep comatose sleep to recover.

My stress was hurting my baby.

Mommy guilt is a horrible, stomach-wrenching, chest-hurting emotion.

The next day MonkeyMan had his first therapy appointment. He was very sleepy, so he didn’t perform anywhere near as well as he could have. However, the therapist (an awesome lady!) still scored him very high on attention span and cognitive ability. She confirmed that he had low tone in his shoulders/neck but fairly good tone everywhere else. (I’m now OCD about tummy-time, much to Hunter’s annoyance.) She also commented that he showed significant signs of stress (hiccupping, hyperventilating,, etc).

More guilt. Now I’m stressed about being stressed. Lovely.

Is there a bright side to all this? I don’t know, I’ll say something if I find one.

Oh wait, I just did. He’s curled up next to me, watching my type with big blue eyes. One corner of his mouth is quirked in a half-smile as he wiggles his feet in my lap.

My little munchkin makes every day a little brighter.