Posts Tagged ‘humidity’

“Oh, I’m so sorry….”

No, that’s not what people say to The Hubby when they find out he’s married to me. It’s the response that often follows the sentence, “My child has Down syndrome.”

I’m not here to chastise anyone. I mean, before I had my own little Flexible Flyer, I might have said that a time or two. After all, society tells us that it’s such a tragedy.

And it was, for a time, back when I lived out a lifetime of fears inside my imagination. But it quickly became apparent that I’d been sold the proverbial bill o’ goods, that the people who told me how terrible Down syndrome was had no idea what they were talking about.

I realize it’s still hard for a non-Downs parent to conceptualize. Having 3 non-Downs children myself, in addition to the velcro monkey, I feel qualified to put things in perspective for you. So here, in no particular order (why do I always feel the need to say that? As if you people would honesty expect anything resembling “order” to spring from a blog titled “Chaos Diaries.”), I give you 10 things that are more tragic than Down syndrome.

1. Having a run in your pantyhose

2. The thought that gas prices might rise above $3 again.

3. The fact that I didn’t get my Christmas tree down until after Mothers’ Day, and it’s almost time to put it up again.

4. Baking a hot, fresh loaf of bread–and then finding you’re out of butter.

5. Opening the jewel case of your favorite CD to find that last time you played it, you took whatever was in the CD player at the time out and stashed it in this case—and now you have no idea where your favorite CD is.

6. Having to vent your dryer out into the laundry room because the plumbers who ran the ductwork thought running the duct up through two stories and an attic out onto the roof would make infinitely more sense than running it 6 inches through the exterior wall, so now it’s always clogged and your dryer takes 3 hours to dry (and even then it doesn’t dry, it just slighty-less-wettens), and poses a fire hazard, so now every time you want to dry a load of clothes you have to open the window (which happens to be over the cat litter box) and prop the box fan in it to suck the hot, humid air out, because as posh as the idea of having an in-home sauna sounds, “black mold eradication” isn’t quite as sexy.

7. Peanut allergy. Especially when your 5 year old rushes into your arms crying after school, because one of her friends grabbed her hand on the way out of the classroom and of course, they ate PB&J for lunch and now she’s afraid she’s going to die any minute.

8. Traveling with 4 children.

9. Going to SuperTorture with 4 children

10. Being 14 years old and spending an hour flat-ironing your hair, only to walk outside in the humidity and have it frizz (which, according to my 14 year old, would also make it onto a list titled: “Things that are more tragic than the end of life as we know it on this planet).

I could go on forever. Seriously–you know I could. And what’s more–I bet you can come up with a few of your own. Leave me a comment, and let me know what things in YOUR life are way more tragic than the fact that you have a child with Down syndrome.

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7
Sep

Be careful what you wish for….

   Posted by: Ashley Moreno    in Chaos, Down syndrome, Parenting

I still remember how scared I was when I found out Mason had Down syndrome.

It wasn’t the intellectual disability that haunted me; I wasn’t bothered by the fact that he might not excel at mathematics and foreign language. It wasn’t that he would look different or talk different. It wasn’t even that I worried about other kids being mean to him. They’d have 3 older siblings to contend with, after all.

No, my overwhelming worry was that Mason would be passive spectator and not a participant in the grand adventure of life, watching from a distance, not tuned in to the world around him.

I am happy–and somewhat exhausted–to report that my fears were completely unfounded.

As I write this, I have just gotten back from a walk with Mason. To be more accurate, from a walk-jump-run-fall-monster stomp-sit in the dirt-offer fingers to the neighbors’ dog for a good licking-fire hydrant discovery-gravel inspection-sit in the middle of the road-run the opposite direction when Mom says come here with Mason.

Incidentally, if there are parts of this post that seem inconsistent or that just don’t make complete sense, it is no doubt because Mason has just swiped my notebook and used my freshly penned page to mop up the excess wet pasta slime from his high chair tray. Lovely.

Back to today’s expedition. It started out as a little time on the porch swing after Mason got off the school bus. It would have been a relaxing proposition, except for the fact that he insisted that I sing an original little ditty I composed in his honor called “Swing, swing.” It goes like this: Up and down, high and low, that’s the way we like to go. (repeat) Swing, swing, a marvelous thing, oh how we love to swing. (repeat). I am not a student of music, but whatever that term is at the end of a stanza that indicates “repeat without end,” Mason thinks this song has one of those, because the minute I finish he yells “Again!”

After the 23rd refrain, I took a deep breath and closed my eyes to fortify myself for yet one more round. When I opened them, I caught a fleeting glimpse of Mason’s backside as he headed around the corner of the porch toward the driveway. Now, I should mention that most of the Mo’s have been sick this week, which means Mommy hasn’t had much sleep. Suddenly another refrain of “Swing, swing” didn’t sound so bad.

The caliche was already crunching under Mason’s hiking boots, so I had no choice but to pursue him. I tried to encourage him to stick to the paved road, but he immediately veered off into the high-grown grass along the neighbors fence, like he always does. We’re out in the country, so this isn’t a manicured parkway–it’s dirt and rock and stickers and ants. And stickers. Not those little burrs that are nothing more than organic velcro–no, these are evil, thorned, spawn-of-hell deviant stickers, the kind that have hooks and barbs when you look at them under a microscope (okay, the fact that they HAVE hooks and barbs isn’t dependent upon whether you’re looking at them under a microscope. But I’m tired. I haven’t slept. And reworking that sentence felt like it was going to take a lot more energy than I have at the moment, so we’re going to run with it and keep going).

First stop, the neighbors’ fence to greet Harley, their black lab. We have a perfectly good black lab of our own, who happened to be on our front porch–the front porch Mason recently abandoned in favor of coming to see THIS black lab. My older kids insist that this is a demon dog. I’ve always believed them, because he barks like a demon dog every time I walk down the road. So I rushed to the fence, hoping to beat Harley. He got to Mason first…and proceeded to lick every one of his pudgy little fingers through the mesh, tail wagging, ears flopping. Mason giggled the whole time.

We ambled right down the road onto the adjacent cul-de-sac (our neighborhood is shaped like the number “4.” Well, not the “4″ I just typed, but more the way you actually write it, where it’s open at the top. Anyway…), Mason told Harley goodbye, and we walked uneventfully to the leftmost edge of the ’4,’ then turned around to head home. I was elated at this point, because Mason’s idea of a walk is uni-directional, as in walking “away.” He is not into the return trip at all, and lets me know by thrashing and screaming. But this time he was actually okay with the about-face, which I took as a good sign. Because I’m an idiot like that.

About 15 feet into our back-the-way-we-came, Mason noticed the gravel at the edge of a driveway. Like the black lab, gravel also falls into the things-we-have-our-own-of category. But this was someone else’s gravel, exotic gravel. I tried to channel my “we’re-exploring-and-experiencing” mood as he sat down on the road–I really did–but it was hard. The sun had started peeking out through the clouds, playing mean games on my face with the humidity. I wiped off the sweat and bent to pick him up. Only Mason wasn’t exactly in a being-carried kinda mood. He informed me of this fact by stomping, screaming, and pinwheeling himself across the road.

Just before he threw himself to the ground, he noticed the out-of-service fire hydrant. You know boys and fire hydrants. No, he didn’t pee on it. That’s dogs and fire hydrants. But he did set to inspecting it. In detail. As if when he arrived home he would be called upon to create an exact clay model of it. Meanwhile that humidity is dripping out from under my hat and down my cheeks, and I’m wishing I could convince him to just let me carry him home.

“C’mon buddy, let’s go.”
“Nnnnnnnnnnnno.”
“Can I hold you?”
“No.”
“Look–it’s Harley! You want to go see Harley?”
“No. Nonononono. No.”
“You want some milk?”
“No.”
“Applesauce?”
“No. Nonononono. No.”
“Wanna go watch a show?”
“No.”
“If you don’t stand up, I’m going to carry you.”
“NO! NO! NNNNOOOO!”
“Well, I’m going home. Bye.”
“Bye.”
“I’m serious. I’m really going. See? I’m walking down the road. This is me, going home. See? I’m going.”
“Go.”
My bluff had been called. Dang, this kid’s good. I walked back, my mommy-tail between my legs.

Any mom who’s been on the job for very long knows there’s only one thing to do in this situation: cart the kid’s kicking-and-screaming booty home forcefully. Remember the whole ligament-laxity thing I told you about? (Clean up on aisle 6) Well, another implication of this condition is that a child with Down syndrome who does not want to be held is NOT going to be held. This kid can twist and torque and flip and writhe like that little weasel-ball they sell at the Cracker Barrel gift shop.

I tried anyway. And within seconds I was reminded that Mason had walked the whole way through the sticker patch. With each swipe of his feet, my forearms bore the brunt of those evil spikes.

Then, I saw it–my small, round, flourescent-yellow dimpled hope. Golf ball! See, Harley’s owner chips golf balls all the time. And this little stray baby was my ticket home.

“Look Mason! You wanna play catch?” Yeah, technically I intended to play fetch, but he didn’t need to know that. I tossed the ball down the road. After retrieving it, Mason sat down in the middle of the road and waited for me to do the same.

This would be so much easier if he would just let me carry him.

So I finally got him to stand up and showed him how this game was going to work. I threw the ball, he ran after the ball, I ran a further down the road so he could throw it to me, and all the way we’re making forward progress. Until the little yippy dogs came down a driveway toward us. It is a proven fact that 4 year olds cannot resist little yippy dogs.

Now, at the edge of the yippy dogs’ driveway was a toddler-sized pothole filled with muddy water from the storm the night before. If this were some predictable B-comedy, I’da said something like “Don’t step in that–” and then Mason would have tripped, falling right into the pothole, covering himself head-to-toe in mud.

Ummmm…..yeah….

He pulled himself out of the muck, wiped his muddy face with his muddier hand, stomped over to me with his mud-encrusted-sticker-covered boots, thrust his arms into the air and said:

“Mommy, HOLD ME!”

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