Archive for May, 2009

This is what it’s like to live with Down Syndrome

It’s impossible to be mad at my son. I’ve tried. Believe me, he does enough things to get under my skin and irritate me until I want to scream. For example, this evening he dunked his entire hand into his dinner as if was dipping a paint brush into the can. He then held it up and looked at me with an expression that said: Why does my hand feel so gross?

This little episode wouldn’t have gotten my goat if it hadn’t been for the napkin he threw in his food 30 seconds earlier; and turning around 180 degree in his chair so he wouldn’t eat; and spitting every third bite out so it would dribble on to his clean shirt.

Just yesterday I told the nanny that we can not always react with the same discipline as we do with other kids. It’s just not always cut and dry what thought process is going on. And I don’t think it’s fair to say “no” 400  times a day, which is entirely possible.

Addison is healing from the pneumonia at an incredible rate, but we’ve still got ties to the oxygen machine and stick pretty close to home. School is only a few days week. He is getting bored, and I can see some old tantrum behaviors returning. He’s smacking people in the face when he gets frustrated and throwing things. So, I grabbed the stuffed moose and gave the beast a spoonful (with full moose-slurping side-effects) before Addison would take another bite.

I will never be able to completely understand how Addison connects A to B. He’s got his own way. And for that, I just can’t hold a grudge. And who could ever get mad at a guy who cleans his feet before eating?!

What did you just ask me?

While walking with an ice cream in her hand and scooping a dollop of gummy bears and marshmallows into her mouth, my daughter asked if she could have a snack.

I had never heard that one. Was this possible? Did she just ask me for another treat while she was eating a pretty large sugary, frozen dairy product with those things I just mentioned on top?

These are the moments a parent can either blow with anger or laugh. The two choices sit side by side, just like the ice cream toppings. Which one will did I choose?

Forgiveness

After dropping my jaw, I just had to laugh. It’s hard to be mad at my daughter long. She’s got this way of melting hearts around her because she tries so much; she cares so much; and she takes it all in so much. I can’t let a little too much sugar stand in the way of that.

The brochures didn’t picture this as a piece of paradise

Yes. I do have palm trees waving in the fresh air in my back yard. I do drink delicious water from fresh coconuts, but I’m still waiting for that missing piece of paradise. For example, where’s the guy with the great chest that holds the palm tree like a fan above my head? Where’s the days of basking in the sun at the beach? Where’s all the pretty brochures promised?

This - this -  is my paradise…..

…walking in on ten cockroaches eating a bean that fell on the floor.

…walking in on fifty ants eating a cockroach.*(See footnote.)

…never having the interior of my car dry for six months (which begins to smell after the first month…)

…turning to flush the toilet only to learn we won’t have water for 24 hours.

…and that toilet paper basket next to the toilet! It’s always full!

…our idea of fine dining on a Friday night is Taco Bell.

…still only half-ass good at a language I’ve been working at for 11 years.

…roofs always leak.

…a guy parked against the left curb has decided to take a left and pull out in front of my vehicle so that I must slam on my brakes to not hit him. He waves and says thanks as he passes as if it’s all regular part of the day.

…hospital visits

…ant bites

…fleas

…lice

It’s just the beginning of the list. Now this could get terribly depressing, but for some reason, it’s my little paradise. I wouldn’t trade my kids or my crooked little condo for anything.

So if they guy with the palm leaf shows up, he’ll have to learn to clean up children’s vomit and change diapers and pick out nits with a fine toothed comb.

Now that - THAT - would be the missing piece to paradise!

*(Note footnote.)

*

Just getting across the street takes a lot of faith in some towns

It can take a great leap of faith to cross the road in little towns. Originally these streets were made for oxen, trotting along with a yoke upon their back. I don’t think there were many collisions back then as they just walked a lot slower.

The streets are pretty much the same today as they were then. The structures were built right up to the corner. I imagine each home or shop owner trying to get every inch out of their square footage.

In order to see if another car is coming, I have to put my car’s bumper into the intersection. Then, I strain my neck over the steering wheel trying to gain just a bit more vision in the hopes that an oncoming car won’t smash into me.

Since the whole town would have to be demolished and rebuilt, I suspect this will not all change for a long time.

It might not be a bad idea to stop in the saint store and pick up a St. Christopher. If I could find a parking spot that is.

Life is alive with creatures that will eat you out of house and home

Small insects have been leaving a trace of their existence right on top of my daughter’s bed. Termites.

Got wood? In the tropics I can say with almost 100% certainty the creatures are either already there or on their way. Last year, the landlord spraying diesel.  Since diesel gas kills brain cells and my son is home-bound, I opted for a second, less-toxic option of a thin varnish-like paint with the poison right in it. Smelled just as toxic, however. Yet at least I knew where the paint was applied as how to somewhat contain it.

Termites, at least the kind in my roof, leave a lot of poop behind. It’s one of the ways to actually detect them without ripping apart the ceiling. Last year, the diesel spray treatment lasted probably six months until they returned. Most likely, this treatment will have the same result.

Ripping apart a child’s room that is a blooming pack-rat is a lot of work. We moved her mattress into my room, which leaves no floor space to walk. And we had to move all her stuffed animals, her statues, her books, her clothes, her scraps of papers. Finally, when she came into my bedroom with a handful of framed photos, I was able to persuade her that her room was still connected to the house and she would return to her domain in a few nights.

She has a “fairy” tent to go over her bed. This is where the poop gathers most. Although I’ve cursed the toldo as I’ve had to rehang it many it times, it’s become a blessing as all that litter could have gone into her brain through her eyes and ears.

I remember touring the Edison estates in Florida. One of the old homes was being demolished, unrepairable, due to termites. Coming from a land of snow and ice, termites were odd, creatures looming like characters from the pages of science fiction. Now, they are little monsters that live right in my attic.

Life is more than alive in the tropics.

An effort to get out an exercise has left my brain exhausted

Because Addison sleeps with an oxygen hose, I wake up a lot at night. The little nubs pop out of his nose. I think it must only be angels that wake me up as I often jump with a start for no reason only to reach over and find that all the tape I’ve stuck to his face wasn’t enough. When I get up so often in the middle of the night, I figure I need to lay off the exercise because I burn all my calories while crawling around on his bed and jumping up to check the oxygen machine.  But since he’s getting stable and I’m waking up two or three times rather than ten, I’ve decided to put my toe back into my running shoes.

Granted, it’s only thirty minutes, but it feels like a big plus. And though I look totally ridiculous running up hill, I look like I might at one time have been an athlete when I’m running down hill. What I’d forgotten about running is how many times I get asked directions.

The other day a taxi driver slowed down to ask me where a calle was. I had no idea and pointed him into the direction of a guard down the street. The minute he left I said shoot because I messed up the language again.

When I first arrived here, I would plot exactly what I was going to say as I approached the cashier:

Good morning.

Yes, here is my points card.

Could someone help me with this large bottle of water?

Thank you and have a nice day.

And then, out of the blue, the person would ask me something and throw me off track like a derailed boxcar like  - Nice purse you have there. Where did you get it?

I was so new at the language, I couldn’t think fast on my feet. If I didn’t plan what I was going to say, I’d misunderstand the singsong syllables that came streaming out of the person’s mouth. Most of the time I’d freeze and stand that just looking stupid. Really stupid.

As I pointed the taxi driver to go down the street, I said every thing right…until the last word. Derecho - should have been derecha. I was explaining that the guard shack was on the right - la mano derecha. Derecha must have an “a” to match the feminine of the word hand. However, mano is a tricky one as even though it ends with an “o” it is feminine, thus all adjectives and articles describing it must be feminine. This explanation is actually what goes on in my head, in nanoseconds, when I talk. I sometimes get it right and often get it wrong.

Then, as the man drove away and I was biting my tongue, I thought: No. Maybe I was right after all. Ticos tend to say la mano derecha but other Spanish countries say el lado derecho. In the latter, I’d be back using the “o” instead of the “a.” (Lado means side.)

Oh that masculine and feminine thing. It’s a tough concept for those of us who’ve grown up with all nouns created equal. Running doesn’t use any calories compared to learning a new language.

The lettuce is rolling in

Once and awhile, a truck load of this gorgeous lettuce comes in. It’s so delightful to have something different than the greens we see all the time. As kale and other varieties are sometimes hard to get, these beauties just glowed out to me.

As I reached up to grab a few, the water spritzer came on and got my arm all wet. Small price to pray for a great salad later this evening. And though Addison won’t know he’s getting this vibrancy because I put it through the juicer for him, I have a funny feeling we’re all going to see him shine from the inside out.

My son found his oxygen hose in the most interesting of places this morning

When the nanny pulled down Addison’s pajamas, the oxygen hose we tangled up in his testicles. Not a pretty site, but it explained why he was walking so funny.

At the time of discovery, I was stretched out backwards on a big, red ball.  I began laughing so hard I couldn’t get up. And it wasn’t just the position of the hose or the look on the child’s face. It was the ridiculousness of IT all.

What was I thinking when I began my search for paradise? I can tell you with one great assurance - it did not include Down Syndrome, an oxygen machine, or beating on a child’s chest to expel phlegm. Or divorce; or single parenting; or cockroaches; or mold growing on my pants that are hanging in the closest.

But come to think of it, I guess I’d have it no other way because I’ve always, always have quite the story to tell. And a good story is one step short of heaven on earth.

(The other being having someone to share it with.)

This is what it’s like to live with Down Syndrome

Mysteries. There’s just so many. Often I can feel powerless to do anything. And some days I feel as though I’ll be struggling with ailments and health challenges all my life. Even though my son is approaching a birthday, there are days I do not feel I’ve come a long way. The mysteries become like secrets I’m never going to be told.

Yet when I look at his photos Addison, of course, was once a pudgy little baby. And today, of course, he is a toddler that likes to wear his mother’s hats. And then sit on them. It is true some things I may never truly understand, but the feeling I am lost is an illusion. I know a million things more than I did when that pudgy little baby rolled around on the floor.

Last night Addison got a fever. In an instant, I saw us back in the hospital. All the worst case scenarios came rushing up my throat and began to choke me. This transition from sick with pneumonia to a healthy child is riddled with those mysteries.

But I’ve found this trick to help deal with some of those “choke hold” fears: Get up and start doing something. Dance to music; read a positive book or saying that is inspiring; take steps, without drama, to help ease the comfort of the child.

I suggest this formula for anything in life. All we have to do is substitute that last part about the sick child to whatever it is that has a grip on us.

1. Dance to the music.

2. Read a positive book or saying that is inspiring

3. Take steps, without drama, to help ease……. (fill in the blank)

And the end to last night’s mystery? Addison’s fever left at 9 p.m. He slept like a pudgy little baby and awoke this morning like a boy about to have celebrate his fourth birthday, like a little man on fire.

Mystery solved. For now.

Big, bold, bright, beautiful colors pop out of nowhere in Costa Rica

Around the slightest of bends can pop the most delicious colors. Costa Rica has this way of popping beauty right before my eyes. In the beginning stages of the rainy season, many trees sprout blooms and huge seeds dangle from their branches.

Kids loves this tree because these huge long seeds - about the size of half an arm - makes a great instrument. And come this time of year, almost every kid on the block will pick one up; bring it home; and paint it so they can shake it to a Latin beat.*

I believe the seeds are edible also although I haven’t investigated that yet. (I think I’m a bit skid-dish about that as I tasted these one seeds highly suggested to me by a native and it was like eating clover. Clover with a bit of mud on it.)

No matter. This tree does it for me. More than words can say.

*If you look closely, the seeds hang like a boomerang.
Several are visible in this picture.

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