Monday, December 31, 2012
Those who know what a graphic factory I used to be will understand what a big deal this is. :)
Blogger hates photographs and, if memory serves, hates graphics even more, but let's see if it'll play nice.
Sunday, December 30, 2012
Saturday, December 29, 2012
written, obviously, on the last night of November...
Saturday, November 3, 2012
Thursday, October 25, 2012
The other day C clambered over my crossed ankles into my lap, and, fisting two chubby hands into the collar of my shirt, leaned back to study my face. We were sitting in front of the window overlooked the garden, and sunlight filtered through the trees, lighting up the green and gold flecks in C's brown eyes. C has trout-stream eyes, the color of sunlight on a leaf-filled brook. Deep, soulful, absolutely gorgeous deep set almond eyes.
A moment later knees thumped on carpet and Hunter crab-lolloped over to lunge for his spot on the "baby gym". He turned a laughing face up to me and the sunlight splashed into his eyes. Hunter has eyes the intense, shocking cerulean of a Florida summer sky. While C's eyes are deep-set and almond-shaped, Hunter's are shallow and round. And while subtle color flickers through C's, Hunter's eyes are lit only with the twinkle of trouble. He has the tropical land of his birth in his eyes and they are beautiful.
It was only after both boys tired of chewing on my collar bones and scampered off to squabble over their flashcards that I realized the whole time I was admiring (and yes, comparing) the two boys' eyes that never once had the thought of Down syndrome come into my mind. I never thought that Hunter's eyes are smaller and shallower-set because he possesses an extra chromosome, or that Corban's are deeper and larger because he doesn't. I only thought of them both as two little boys, unique and perfect in their own selves.
Which of course, is exactly what they are.
Monday, October 22, 2012
Saturday, October 20, 2012
Sunday, September 9, 2012
Tuesday, July 24, 2012
Friday, June 15, 2012
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.
Monday, June 4, 2012
Saturday, January 14, 2012
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:
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!