Archive for October, 2006

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


Funny thing….I watch other babies, ones I know who’ve grown up for the last year alongside my son. These babies walk. And before that they crawled. My lovely little cherub boy, who’s skin is like milk and face like a pumpkin, cannot not crawl; it will be many more months before he walks.

I don’t dwell on this. We go merrily through the day, plucking away at little achievements. I relish his little "baby-ness." Most days I plow right through any sadness about my son’s floppy muscles.

I vacillate between wanting to keep my child in the realm of a regular old life, but I have to keep this thing, this Syndrome, sitting there in the passenger seat. It doesn’t drive our life, but it rides along everywhere we go.

In the hospital, as I watched Addison fight for his life in an incubator, the doctor told me that a child with Down Sydrome was a gift. I wanted to hit her. I thought she was placating me so that I didn’t feel so bad because not only did my son have Down Syndrome, but he’d also just been diagnosed with a very serious bacterial infection and would have to stay in the hospital another week. All the books on Down Syndrome seemed to pound in the fact there would be so many things my son wouldn’t be able to do. Or, will do themso much later than other children. Instead of a baby, I felt like I had given birth to a demographic group. I quit reading them all.

Last night, Addison and I read a book about animals. He pointed to all the creatures with his cute little chubby finger and said “OOhh, ba ba ba – ta ta ta.” Then, I squeezed him into all sorts of yoga positions, and then we moved right into exercises to help him crawl. We topped off the night with a round of peek-a-boo. He held the cloth in front of his face, paused a moment, and then pulled it away. We laughed and did this until he fell backwards on a pillow from exhaustion.

Funny thing….Having a child with Down Syndrome is different, but having a girl is different from a boy and twins different from triplets and a child with diabetes is different from a child without sight. I glance at the books now, but I keep them at a safe distance. I read them when I need guidance and occasionally order a new one I see that interests me. I believe each child comes with a life changing lesson for us adults, if we’re willing to listen. My daughter has taught me to let go. Addison teaches me patience. He’s really the one in the driver’s seat. But, then again, what baby isn’t?

Coming to terms with Barbie and French Fries

 

 

 

 

 

 

 

 

The first time my daughter received a Barbie, I hid it. I smuggled it into a closet, and eventually I gave it away. The implications! A Barbie, after all, represented all that was wrong with the way we raise our daughters. Big, pointy breasts, blond hair, and those poor feet, she must be exhausted, standing on her tippy toes all day.

The birthdays continued and so did the flow of Barbies. I gave in to a battle Coco didn’t even know I was fighting. She was drawn to the dolls like ticks to a dog. The two, then three, then four, then five, and now she must have about 15 Barbies in all shapes, colors and sizes.

Barbie is keeping up with the times in order to hang on to sales. The little four and five year olds are turning to other dolls for times of play. Mattel has made the icon more fashionable, hip, cool, and full of the accessories modern day girls love. There’s the tanning Barbie that smells like coconut, the skating/skiing Barbie with ski jackets and knee pads, the art teacher Barbie (student included), black hair, blue eyed, dark skinned, olive skin, blond hair, red hair and all other politically correct combinations.

A few days ago, Coco turned six and I decided to buy one thing on her wish list. A friend of mine gave me the idea to defer all statements such as Mami I want this…Can I have a that…I really want…to a wish list. This has turned into a great tool for teaching my daughter how to write, plus it’s a way for her to do something with all those feelings of: isn’t the world a big, bright, shiny place where I can buy lots and lots of stuff and why can’t I have it all?

This is not the first parenting issue where I’ve flipped 360°. I marched into mothering thinking I knew what was best, not only for me, but for so many others. Barbie! Not me! Television! Forget it. Fast food! Disgusting! What I didn’t know when I started mothering was that the daily decisions constantly placed me on the other side of the fence. I ate fast food when we traveled because I didn’t want to get out of the car with a sleeping child, and I was so hungry I felt like nibbling on the steering wheel. Coco and I chill with the Home Decorating Channel. I relish the words, “Mami, next is Design on a Dime!” And, I’ve purchased my first Barbie.

I haven’t given up my values, instead I’ve relinquished the desire to censor many of the experiences of her life. Coco loves Barbies, for awhile. She loves her plastic animals more. She loves television, about once every two weeks, then she’ll turn it off and say, “I’m bored.” She loves French Fries, but she knows to eat her cucumbers and drink her apple/celery juice every night. I still have to keep her away from the really bad stuff, but I want her to experience the world on her terms, and if I keep stuffing all the Barbies in the closet, they’ll just come back to haunt me.

So, I walked up and down the toy isle and had it narrowed down to two wish list items: the large Barbie head in which the child styles the hair, or the Barbie with the dog that poops (pooper scooper included). Is there a really question here? Besides, the big headed doll was creepy.

Muddy Waters

is full of adventures, but occasionally a few can turn down the wrong avenue of excitement.

After ten days of vacationing on the Caribbean, I had planned a leisurely ride back to San José. We left in the morning after waving goodbye to the monkeys. We took our time shutting up our beach home and enjoyed a relaxed breakfast.

Friends of ours were vacationing with us, but left a few hours after we did. Because is such a mountainous area, there is often only one pass to and from the beach. One highway runs from San José to Limón and then on to the southern Caribbean coast. (Sometimes an alternate route exists, but it can be longer and much less reliable.)

The main highway is full of potholes, and some people try desperately to fill holes with everything from stones to broken clay pots to coconuts. Road crews are working on the road, and it is improving, but slowly.

I played a game with my daughter, guess that traffic problem: accident? Gas pipe installation? Stubborn cows? Goats? All of the former had happened to us. We were having a hard time narrowing this one down. I tried asking a few cars passing us in the other direction, but no one slowed down enough to hear my voice. After 30 minutes outside of Limon, I telephoned my friends. They were about two hours behind us.

“I heard there was a taxi strike,” my friend said as his voice faded in and out. A taxi strike? How could a few taxis cause thousands of cars, the entire right side of a nation, to stall and go nowhere?

We crawled on, like iguanas along the asphalt. People became more crazed than usual. Drivers decided to pass us. Yes. Pass us. Where were they going to go? My glare did nothing to thwart these evil acts – Ticos AND even a few TOURISTS! would zoom ahead of us and then cut in line when cars starting coming from the other direction. I watched in delight as a trail of about ten cars got stuck on the wrong side of the road, inches from the ditch because the on-coming traffic caught them head on, in the act.

With one bar of charge left on my phone, I called my friends again. They’d stopped someone on the road, and yes, it was a taxi strike. Licensed taxi drivers were protesting the government’s policy of “turn the other cheek” concerning the growing number of piratas – illegal taxi drivers.

Ahead, in the town of Guapilies, red taxis inched along the road in a tortuguismo – a turtle walk. After driving 3 ½ hours (in a ride that would have normally taken one hour), we found a soda - a little restaurant/store to stop at. Everyone dashed for the bathroom, and I ordered everything we could off the menu. I plugged in my cell phone and sat it on top of the hot dog cooker. I asked a trucker, who calmly drank his orange Fanta, if he had any information about the strike.

“No,” he said. “They’ve also go the alternative route blocked off, which is more windy and dangerous anyway.” He also heard the drivers were planning on hitting San Jose tomorrow.

I left the trucker to his casada – a typical plate of beans, rice, chicken, fried platanos or some similar combination the kitchen decided to “marry” together. Why wasn’t this guy on his cell phone, problem solving, yelling at someone, or at least venting? He was much too calm.

The two waiters looked overwhelmed and giddy trying to keep up with all the business. “There is a saying in ,” my nanny said. “En rio revuelto ganansia de pescadores” – when the river churns, it will bring a good catch to the fisherman. The restaurant would do a good business today. We were stuck in the flow of muddy waters.

All the truckers and a few others seemed to accept that these are the things that happen here. As my baby rolled around on the tile floor, I too accepted my fate. But that doesn’t mean I condoned this archaic method of rebellion.

Unless a legislator was stuck in traffic after a ribbon cutting ceremony, how would this demonstration affect the government? With a few words spun to satiate the public, the government would be able to blow the whole thing off. This strike would only inconvenience us “regular folks:” mothers with kids, campasitos-country folk, farmers hauling pineapples to the city, truckers. Many probably had given up a trip to the city for that errand they’d been planning for weeks.

We loaded back into the car with full bottles of water and bags and bags of odd little cookie/cracker combinations. An hour up the road, the tortuguismo began to loosen up and morphed into a lazy snake. Red taxis sped past us in the opposite direction. It was 4:00 p.m.

“They’re quitting!” I shouted. “They want to get home for dinner!” Instead of a statement of solidarity, the strike had petered into a pain in the neck.

At 7 p.m., we were still an hour from home. There were moments I couldn’t see the shoulder, but I refused to drive any faster. I imagined the ire of the drivers behind me. I wanted to scream: it wasn’t my fault! I left home at 9 a.m. this morning!

One of the reasons I moved to was to become disconnected from the trappings of a fast paced society. And it is slower here. Every day I learn what I can and cannot control, which grounds me more to the issues that are most important to me. Occasionally, there is a price for a more isolated life: information does not pass as rapidly here. Take when Arias was named president, for example. After two weeks of counting votes in an unexpectedly tight race, the announcement of the winner passed like a burb rather than the re-election of a Nobel Prize president who’d just been re-nominated in nonconsecutive terms.

Officials tried to fine the drivers who’d participated in the strike. I think they should. The tortuguismo is an outdated, effective method of protest. I imagine there will be a few more before all is said and done.

Next time, before I leave the beach, I may bring a few more bottles of water, and I may pack a few more snacks, but I will remain in a content place of disconnection. A four hour drive over a mountain will always bring risk, so will air travel, swimming in the ocean, hiking in the park, or showering with soap. There is only so much one can do when the river churns up the muddy underbelly.