Archive for April, 2008

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

I end up in the hospital more than I’d like. At midnight, Addison couldn’t breath. It sounded like he was choking. His glands swell as easily as a bird flies. It’s a toss up between an allergic attack and a viral infection. Every so often I have to use the emergency room to make it through the night.

On the way home, after a painful shot and being poked up and subjected to bright lights, my little guy was babbling away and pointing at all the lights in the parking lot. When he saw our car he pointed to it and made his “vrrrm vrrrm” sign, his fists curled in the air. He chattered and laughed all the way home. Upon opening the door, he pointed to his toy box and said:

Let’s go Mom!

He gave the sign for “dog,” which meant he wanted to read his Clifford books.

I rocked him to sleep after he drank a bottle of coconut water. I put him in his bed and stood over him, listening for signs of wheezing. Earlier I had said to the darkness: Please, I don’t want to go to the hospital. When I was searching for my wallet and an extra diaper and my insurance card, it didn’t seem like my prayers were heard.

With only a few hours before daybreak, I ended up back in bed, struggling to find the words of thanks for the hospital I’ve spent so much time at. It represents so much pain, and it’s also a last-resort route I choose as if I’m rolling up my own sleeve to take another painful shot.

Then, every time - without fail - Addison blossoms into yet another miracle. My suffereing is nothing compared to his. Yet, he woke up with a smile. Got ready for school and even colored an elephant after breakfast. It’s “his” day at school. They are celebrating Addison. He brought juice and a picture of a lion for everyone to color. When Addison sees a lion he puts his hand up like a big cat and curls his finger tips ands says: roooaarrr.

He’s a fighter. I just have to keep following his lead.

It all happens so fast

No one needs to tell a parent that time flies. Downtown San Jose stays pretty much the same. The pigeons; those stone seats by the National Theater; the people selling bags of corn for a few pesos under the trees. And my child? Today Coco looks like she was replaced by aliens with a taller version of herself and a smaller version of me.

Those little red slippers? Her first pair of velvet red slipper I found at a used clothes store. She wore them so often she scraped the toes off so I had to color them in with magic marker. Now she won’t wear dresses. But she’s still got those chubby cheeks and squints the same in the bright sun.

Every day I’m torn between moving ahead and holding on. But I can’t stop the earth from spinning. Though goodness knows I’ve tried.

I can keep my hat on - for a long time

Hair salons are a really vulnerable place. We let someone bathe us; we sit with a group of strangers while wearing bibs; someone waves a scissors over our head, and we we try not to move; then we’re subjected to those hideous fluorescent lights that make our skin - regardless of color - look like it belongs on a corpse. Every detail in my face comes out. When I return from the shampoo sink, I look like my brother.

Since I’m not a guy, this is depressing. Back at the shampoo sink, the voices in my head debated at all the wonderful things the hairdresser is going to say: How amazing you look! You’re in your twenty’s right? I know exactly the style that is going to drive men - and women - mad!

For some reason, I really struggle with my Spanish in the salon. Translation is not literal. And I tend to use terms in English like: itsy bitsy, flowing, drop-dead layers of glistening beauty like the T.V commercials, and shimmering; words I can’t find completely grasp in Spanish. So, I stick with cappas: layers; and dedos which is: Do I want to cut off one finger width or two? See the challenge in this?

I left the salon puffy and with a lot less hair. A lot less. Maybe one dedo more than I wanted. Even with my hair dry, I still looked like my brother. This was not the magazine look I was after. The good news is I’ll be able to make this hair cut last for quite a while. Another bonus: I’ll be able to get some use out of all those hats in my closet.

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

Kids make all us parents home-bodies. Even my first child did. I like being home more than most I suppose. But with a special needs child, I find myself canceling out many events I wish I could have gone to.

A few weeks ago, friends invited me to climb the highest peak in Costa Rica: Chirripo. This stuff is right up my alley. I’m a backpacker and love the outdoors. It’s been years since I’ve gone. When I first arrived in Costa Rica I jumped right into the scene and went for an incredible several day canoe trip. I’ve been river rafting here. Then came the kids. I’ve managed to haul my daughter for over three years in a backpack while traveling the U.S., Costa Rica, and Europe, and we even dabbled in some light hiking. No so with my son.

First, when I tried the backpack, he was too slouchy and would slip into it. Then, we we got over that - a year later - he pulled my hair and got so many laughs from everyone, I couldn’t quite figure out how to get him to stop. Then he grew and became accustomed to strollers so now that he’s almost three, I have no desire to haul him on my back, which has seen enough stress over this kid’s lifetime.

I decided to go on the hike up this mountain. I said: Yes! It’s my time. I began calculating care and how it would work. I even started fantasizing about backpacks and boots (something us hikers are a little nutty about). Then - as if a note was delivered right to my door - my son had an allergic attack in the night and couldn’t breath. I was minutes from packing him up to go to the hospital. I sat by his bedside, laptop open, plugging in anything to find an answer on which drug to give him or some miraculous herb I could wave in the air that would make this all go away. The nanny sat by my side. All my nanny’s are fantastic support, but I realized this was just too much responsibility for them. And as single parent, I’m sort of stuck with this for now.

That’s what I keep telling myself. For now. Other kids have allergic attacks and know what it’s like when a child can’t take in air. It’s scary. The thing with all my child’s needs is just that. There are a lot; and they all happen at once. The struggle to exist - and then thrive - is a tremendous challenge in these early years: the walking, the speech, the digestion problems, breathing problems, development concerns…..

So, I can’t leave my son alone with someone else right now. Chirripo will have to wait. It’s an awfully big mountain. I bet it will still be there when I’m ready.

Have you trotted outside lately?

My daughter is planning a “sleep-over” with her friends. This is quite the ordeal. At seven, these girls are beginning to eye what it’s like to be an “older” girl. While putting Coco to bed last night, she read me the list, which was basically illegible because she’s spelling phonetically and bunches the words so that eventually they’ve formed a ball in the center of the page. Half way through the list, she got frustrated.

I can’t read it! What am I going to tell the girls at school tomorrow? I was supposed to have the list ready!

I was amazed at how many tears appeared in a matter of seconds. I promised her at breakfast in the morning, I’d help her rewrite the list.

In the morning, as promised, I took out a yellow pad as Coco dictated to me the list while she spooned cereal into her mouth:

Sleep Over List

1. Pick up girls.

2. Show them around. (Got to know where the bathroom is!)

3. Play outside.

4. Yoga.

5. Eat.

6. Watch Bee Movie.

7. Wake-up.

8. Eat.

9. Trot outside.*

10. Yoga.

Sound like fun doesn’t it? Especially that trotting part.

*I swear this is her word, not mine.

I pay bills at the grocery store; people don’t like it

To pay electricity, phone, and water bills, I go to the grocery store. After ringing up a pretty large order of foos because I hadn’t shopped in awhile and could no longer pass off eggs as dinner, I pulled out my bills.

As I watched all my food items ring up, I saw a lady with very few things come up in line behind me. I knew she’d get a little upset at me. My friend says she always goes to the pharmacy two stores down and pays her bills. She feels it’s a service to not make people have to wait in line. The times I try to pay bills at the pharmacy the computer service is usually down, and I end up back at the grocery store anyway.

I could see the woman’s face contort as the clerk punched in my numbers. The system was working, but it was slow. The woman fidgeted with her bread and package of cookies, rolled her eyes at the woman behind her, and then she sighed. You know that sigh. We all do it. The sigh that says: oh my gosh, how can we tolerate such inconsiderate, silly, hideous people that dare to do such things. The gall! The effrontery! (Ok, so I looked that one up but it’s a great word….anyway…..)

I’ve done it. As computer systems get faster and our society gets more and more accustomed to speed, we have very little patience for anything. I snip at the Browser when it’s taking too long to load a page; I get steamy when the guys decides at the last minute to check his oil at the gas station; I possibly may even say a few bad words under my breath when that lady picked the ONLY shirt on the shelf without a price tag.

What if we turned out thinking upside down? Maybe I am doing a service for the woman behind me. She gets a chance to practice patience - a virtue sorely missed today. Even though I feel a little guilty for making people wait, I will continue to bring my bills to the grocery store. It’s a service offered to us, “the public” and I shouldn’t feel guilty for using it. I look at it as a win/win situation. The lady behind me learns a little patience, and I get rid of some guilt.

So instead of turning my liver upside down when the lady’s credit card in front of me doesn’t work and she has to remove about 1/2 her groceries ( which are already in bags) because she only brought so much cash, I wait. And I remember that one day this could happen to me.

And the cows came home to Costa Rica

This is kind of a big deal for us. Art squeezes and pops up in Costa Rica. There’s a great symphony at the National Theater; there’s jazz concerts; there’s theater; museums; and stuff happening all the time. But it’s sometimes seems so hard to get to. Times are often listed wrong if at all. Ticket sales are confusing; and it’s as though there is a concentrated effort to make it as hard as possible to lug you & your family out to a show.

I am one of those that get out and see it. I’ve watched seasons of symphonies and bunches of ballets. And, I’ve also gone to performances where no one showed up (due to that wrong time listing mentioned above.1) The thing about these cows is they are right there. I love the fact that someone or some group spent all this time creating colors and humor and thoughts about, well yes, about cows. And the beauty of these beasts is that they are giving their performance day and night. Furthermore, since they are so darned heavy, I know exactly where to find them! Imagine what would happen to this world if we all painted a cow for a day.

See the action here: Cows Invade Costa Rica

1. Now you want to here something really funny! I loaded the kids in the car TWO weekends ago because, yes! the times were so confusing & I got it wrong.

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