Archive for August, 2008

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

In the middle of the night…I hear nothing. In the morning, there it is again…nothing. Nothing except the faint, slow sound of my son breathing. Breathing without struggle; breathing without interruption. After three years of fighting to catch his breath, Addison finally has what we all take for granted.

Three years ago, I sat in the frigid, sterile room of the NICU holding my son, trying to warm him and create as normal an atmosphere as I could considering we’d both just had major surgery. Above the quite humm of the florescent lights, I heard a slight gurgling in his nose. There was no mucus or any signs of a cold. I pointed it out to the pediatrician, and she told me it was nothing. That bubbly sound - way up in the bridge of his nose - rocked the foundation of my life, impeded my son’s growth, and dove me near the depths of depression and complete physical exhaustion.

I can tell you recipes for nasal sprays; remedies for allergic reactions; enema concoctions; and positions to prop children to help them sleep. And with Down Syndrome, there are these physical “things” that are hard to get around until the child’s body grows: a larger tongue, sluggish immune system, and smaller ear tubes, to name a few. The moment Addison snuggles into bed, his tongue tilts back just ever so slightly, and that tiny bit of mucus mulling around in his airways, blocks a good percentage of air. Imagine what it’s like to be on the verge of suffocating. Now imagine this all night long, when all you want to do is get into your dreams and under the blankets. Add a cold on top of all this, and it’s a breathing becomes gasping. To give an absolute formula to anyone on how to help a child breath is like trying to gather the rushing waters of a river into a bathtub.

Above all the cures, I will tell you the one that works. In fact it is the only cure, I can put my stamp and can confidently say all other professions will join in on with high approval ratings: Gratitude. It’s easier said than done. Try being grateful for EVERYTHING. That includes the hole in the ceiling, the ex, the cockroach scurrying across the floor, the food in the fridge, the gas in the car, the cranky boss, the air we breath, and yes, even the sleepless nights.

By unearthing the gratitude for everything, I’ve found a treasure chest of wisdom or sometimes just an AHHaa moment, where I can then move on more clearly to the next step or the next breath. Those nights where I hear nothing are the sweetest, most jubilant sounding of trumpets I could ever toot my horn at. And as we breath more easily, we can all get on with the other important things in life like painting the bathtub.

Let’s see if I have a shot at winning this bet

My nephew and I are running a bet: Who can do the most pulls ups? My nephew is a strong, bright, athletic, and slender thirteen year old. Me? As we skirt around the age and weight issue (and maybe the athletic issue), I do like to think of myself as brighter than the average light bulb; however, the kid has a few up on me, so I got a handicap. The next time we see each other, he has to do six pull-the-body-all-the-way-up-so-the-head-is-peaking-over-the-bar. I have to do four.

I started a pull-up bar routine, which takes only 15 minutes or less a few times a week, on my bathroom shower rung. Yes, I checked that the screws were properly secured into the wall. After mastering one full pull-up, the bar broke. The screws hadn’t come out of the wall, no, the bar was rotten on the inside. Though the shower bar looked like a piece of steel, it was piece of poor quality metal with wood cork on the inside. I replaced the shower curtain and tried again on Addy’s therapy machine. That was about as stupid as trying the shower curtain because I ripped a tendon in my elbow.

Six months later while I’m in the States, I see my nephew’s bar hanging in his bedroom door frame. I inquire as to the cost and cannot believe the thing was only $11.99. I didn’t even bother looking in Costa Rica since electronic and exercise equipment seem to be at least double or three times the price that for 1/2 the value. I bought it and pitched it in the suitcase. I moved it to the top of the stairs, and there it sat in that corner that gathers all the junk that moves from first floor to second floor and back again (good argument for a rambler).

Three weeks later, I moved the bar to another corner near the door frame I was going to screw it into. Two weeks later, I hauled up the tool box with the drill in it. Another two weeks go by and on a rainy afternoon, I read the instructions and begin installing it. I marked the Xs and pushed the spinning drill bit into the wood. I could imagine that underarm flop melting away. That flop we all know we have.

With the brackets in place, I slipped the bar in and hung there. It’s a long, long way up. This is going to be a lot harder than it looks. But it’s got to be easier than the gym and all those weights. I’ve done all that. Goodness, I barely have time to brush my teeth three times a day. But the flop stops at nothing, so I’ll give it a go.

How many can I do? None. I stood on my tippy toes and figured I better go slow because I don’t want that elbow pain again. I always did take more to the tortoise than the hare anyway.

Costa Rica celebrates Mother’s Day in August

August 15th is mother’s day in Costa Rica. A national holiday. Next to Easter and Christmas - and this debatable - it’s the most important day of the year for the family.

Schools make macaroni cards and Coke bottle planters. Coco is preparing a secret song and dance, which I won’t see until next week because as I mentioned, it’s a holiday and her school is closed. They’ve been preparing for a month. Most offices are closed, except the restaurants because everyone goes out to eat. Families, if bickering at other times of the year, mend for for día de madre and spend the afternoon mostly just “hanging out.”

Holidays are a great day to get out and drive the roads and freely coast without tailgating traffic and crazed honking drivers upset that you can’t someone change the laws of physics and fly over the long line of cars in front of you so they can get moving. (As if I enjoy sitting in traffic! And by the way, if I could fly there with a twinkle of the nose, I’d have done it by now!)

It’s also a good day for a walk or a run, especially in the city. I’m betting that the grocery store at the mall will be open. Otherwise I’ll have to figure out something creative to do with a can of lentils, a jar of honey, one egg, and 1/4 cup of mozzarella cheese. Wait…I’m thinking something hot dish style. Hey! Wait! I’ve also got some small bits of tortilla chips at the bottom of a bag. Now we’re talking party!

With just a sneeze, I’m loaded for battle

Coco sat on a chair in the living room, waiting for the French Toast to finish cooking. I peeked out from the kitchen to check where we were “at” in the morning routine. In 1/8 of a second this is what my brain scans:

Are-you-ready-for-school-are-you-dressed-have-you-eaten-yet-have-you-brushed-your-teeth-and-put-your-shoes-on-fed-the-guinea-pig- packed-your-homework-brushed your-hair-and-packed-a sweater?

Addison was eating; the nanny was sipping coffee; Coco sneezed twice. A sneeze was not on the schedule.

That’s just my morning sneeze Mom!

Coco was worried I was going to come at her with medicine or tart tea or pour hydrogen peroxide in her ears or shoot sea salt up her nose. Although I do really try to work on cold/sick prevention (i.e., eating well, rest, not running out in the rain in socks and underwear), the moment I see I sign of cold or rash, I kick it up a notch and pull out the home remedies in hopes of avoiding fevers, risky medicines, or in Addison’s case a hospital visit.

My daughter was right. I ran after her pretending I was going to put drops in her ears and/or nose, and she went squealing around the house all to Addison’s delight. It was a joy to see him laughing because last night at 10:00 p.m., I had him soaking in Epsom salts and baking soda after respirating him on the nebulizer and putting drops up his nose.*

Through all of my daughter’s illnesses, I never worried about her “making it.” When she’s sick, it’s sad and uncomfortable and annoying, but she’s so bouncy and strong, I tend to the fever or cold and know she’ll be fine after a few days. Except for a bad bought of Scarlet Fever, Coco’s sailed through it all. Addison is tender, soft, and spongy. All of his illnesses have that extra “umph” to them.

A suppressed immune system can mean a lot of things. In my son’s case, he’s got poor circulation from the belly down. It’s harder for his body to process and dispel toxins or send needed oxygen to those little toes or digest food. When Addison is sick, it’s like going into battle. I am alert and cautious, yet patient. Hospitals runs during the middle of the night are about as fun as cleaning septic tanks without a suction hose. With all my might, I search for other ways. With Addison’s tremendous fight and bravery, I think we’ve minimized the hospital visits.

Coco boarded the school bus in good health. It was just a sneeze. Addison has a weird under-the-skin-pinkish rash all over his torso, but his fever is gone. He’ll take a few more salty baths and rest. But my home-made medicine cabinet is always loaded, and my ears perked for that next sneeze or runny nose. Coco made it on the school bus in good health, escaping drops or that terrible tea this time around. There’s always a next time.

*I haul Epsom salts down from the States. In Costa Rica, the closest I could find is called Sal Inglaterra - British salt. After looking at the chemical make-up I just decided it wasn’t the good old fashioned Epsom salts I so love and like.

Think about these kids and how brave they are

Living in Costa Rica means mixing with poverty by just turning the corner. At times, I’m overwhelmed at what I see. I do not have to go out of my way to find people so poor, they most likely don’t have dinner, or clean water, or an indoor bathroom. To wallow even for a moment in what I do not “have” is ridiculous. The kids you are looking at marched to protest their nasty living conditions. This neighborhood happens to be right next to a dump, and the trash pickup up is rare or often never. If you’ve lived through a garbage strike, you can appreciate just a bit of what these families have to live with on a daily basis.

Really brave kids

This really incredible woman, Gail Nystrom, founded the Costa Rica Humanitarian Foundation. Gail’s not sitting behind a desk. No. She’s out there every day. Every day. She operates a clinic for women in this barrio - neighborhood - and through that clinic helps feed, cloth, and most of all heal the women and children through education and empowerment. Loads of volunteers come down to help Gail run her clinic. Today was the protest. Volunteers and children made signs and walked together chanting: No more garbage in the neighborhood! One mother pushed FOUR children in a stroller made for one child. The little plastic wheels jostled over the pits in the street and rocks in the road. But she never stopped.

We arrived at the dump at the end of the neighborhood. (This is the landfill where OUR garbage goes: Santa Ana, Escazu, La Sabana…..). A little girl with a bouncy pony tail volunteered to talk to one of the officials at the dump. Barely audible over the engines of the vehicles approaching, the small child told this man about all the garbage in the street. He listened. He held up his photo and took a picture of everyone and read their signs. The group left.

After the kids all finished an ice cream, the volunteers lined up and each child went through the line and gave them a hug and a thank you. The volunteers left, but the children - and Gail - remained.

Funny little pig gets pushy with puppies

This little piggie wanted nothing to do with being a pig. After arousing from slumber, Lila started trying to nurse off the puppies. I’m not a whiz at anatomy, but I’m pretty sure no milk was going to come out of the tiny male. I know Weimaraner pups are irresistible, what with those blue eyes and all, but I think the piggie was overstepping her bounds a bit.

Coco tapped on the pig’s sticky black skin, and the porcine grunted in disapproval. After a minute or two, she was right back at it. Though the puppy didn’t mind, I was a bit concerned that the delicate belly skin of the pup could me punctured. Coco tapped on Lila a second time. The pig protested again, as I suppose anyone would. We both looked down, and the pig has scuttled over to a niblet of bread on the floor and was chomping away while making this deep, rutting noise.

Dear Lila, I thought. I can relate. There are days I, in fact many times, I know just how this petite porcine feels. Each of us, puppies included, were born in these skins. The piggie has tough and kind of sticky skin; the puppies are fuzzy and warm; and I’m - well - I’m white, pasty, and walking erect. Why me? Why me here in Costa Rica - a single parent with a special needs kid? Why a woman? Why can I drive a car? Open jars of mayonnaise? Or play solitaire on the computer?

Like the pig, I often find myself a misfit in groups. My attempts to nuzzle up to most worlds out there has left me hurt, and outcast, disliked, and even hated when all I was trying to do was be nice and have people like me! The human instinct to connect with others runs much deeper than I think any of us want to admit. The problem is, we keep looking to the wrong “kind” to get that warm snuggly feeling from. Drugs, affairs, bad business deals, taxing friendships, chocolate donuts….Aren’t we all doing these things just so we can cuddle up and get that warm fuzzy feeling again?

Who likes saying no? Took me decades to figure that one out. One of the tricks to being a soul inside a human skin is rising above that primal need of snuggling with just anyone or anything - mindfulness. It’s a lot harder than it looks. I know.

Lila scuttled over to a niblet of bread on the floor and was chomping away while making this deep, rutting noise.

Coco can you put the pig outside?

No mom, she said swinging her head back and forth to clearly emphasize the no. I bent down and picked up the little beast and a sound came out of here that I could only repeat if I was an 80 year old man with 70 years of flem built up in my throat from smoking non-filtered Camels and drinking too many martinis. As I walked toward the door, the belching/screeching sound increased and volume. I laughed so hard, I barely managed to open the door. Coco was rolling her eyes and holding her stomach and giggling so hard, she couldn’t breath.

Just as we were about to leave, Lila trotted around the corner. She knew exactly where to find those puppies.

Costa Rica has hidden treasures in the country - if you know where to look

Coco was just too small to go any further. The swimming hole in the river was blocked by a long path of boulders, rocks, and mud. When she left the door with her friends to walk to the water, I put on my sandals to follow. Instead of going to the spot I was familiar with, the children turned to the right. I lost sight of them all. I jogged and slipped in my shoes, trying to keep up.

Hidden down those gorges and steep roads is a refreshing Costa Rican secret: The rivers. I am not talking about the rafting rivers, those are big and well-known and a true adventure if you’re into paddling and pounding the rapids. Further back in the more ordinary campo are the rocky, cool, refreshing rivers of Costa Rica, rolling their way to the sea. Most Costa Ricans know of a river near by where you can hang out for the afternoon among the rocks and water. Getting there can be a challenge, that’s a big part of the secret.

I kept Coco in sight and saw her slip a few times in those silly Crocs, which were worse than my sandals to walk in. The parent in me wanted to call out: Get back here! You’re too little to keep up! Then the adult in me said: She’s in your sight, so perhaps it’s better for her to find it within herself to stop. The group turned a corner. When I came around the bend, I couldn’t see any of the kids. Now the parent-in-me was telling the adult-in-me that I was stupid and should have listened to her. I heard kids giggling and talking but didn’t know where to turn. I continued down the steep road (you know the kind you have to walk perpendicular on to stay erect) and came to a ledge with no kids in sight. Now the parent-in-me was panicking. My daughter is not swift around water and has no experience in rivers.

I walked back up the hill and saw a path on the other side of some barbed wire. I crawled through and watched my sandals disappear every third or fourth step in mud. Now I began to plead with God and anyone who would listen: Please don’t let Coco go near the water. Don’t let her slip. As I passed through another barbed-wire fence, I looked up and saw children, one of them belonged to me. Although the rest of the kids were adroit and nimble in these woods, I quickly counted heads and found all in tact. I called out to Coco. Her face relaxed in relief when she saw me. She was covered with mud.

Once at the river, it was another 100 meter walk over the river and up rocks and boulders. I told Coco to stop. The other children went ahead. We sat on a rock; she began to cry. I told her I would take her if she wanted to go, but let’s look at the path ahead. She mustered enough courage to cross the river, gripping my hands as we stepped against the current. As she watched the other kids play up in the swimming hole, she cried because she wasn’t having any fun. I told Coco I remember being small, like she is, when I was young. Sometimes it’s hard to keep up I told her.

We threw rocks in the river. The foliage and fresh smells took over. I could have sat there for hours. Coco kept looking up at her friends. It wasn’t easy for her to decide to leave and climb back home. She gave me a fist full of rocks, and I promised I carried them home for her. I have been facing the fact that my children will die every day since conception. An automatic “worry-wart” must have been implanted right along with the new DNA unfolding in my womb. I’ve had to make peace with all the dangers that lurk everywhere in our lives: Bathtubs, edges of coffee tables, swallowing pennies, sticking fingers in sockets, drinking the dish soap; running into the street; strangers with candy; falling down the stairs; car accidents; bacterias……..need I mention more?

On the steep climb back up that slippery hill Coco told me as she walked down the hill, she had two voices going on inside of her: One telling her to stop and one telling her to go. Funny I told her, I think those same people live inside of me.

We held hands and hovered over to the side of the road as a group of fast ATVs sped by. Wet and spattered with mud, we got in the car for the long ride home.

Living in Costa Rica is kind of like camping

Living in Costa Rica is a lot like camping - camping lite. About every six weeks or so we get notified that we will not have water. Today, the water was shut off in three or four cities from 9 a.m. until 9 p.m. At least this time we had notice.

There are days when I’ll walk up, turn a water faucet and….nothing. We either have missed the announcement or there wasn’t one. Because we had notice yesterday, we gathered all the buckets, bins, and baskets that didn’t leak to store water. Everyone was sure to shower before 9 a.m. When the water is off, I see how often we use it on automatic pilot: A little oil on my finger tips - I run to the sink. I always brush my teeth and then forget when I reach for the water that I can’t rinse. Flushing the toilets? The word was out early to follow the old saying: if it’s yellow let it mellow……

Not having water gives me the chance to be appreciate this liquid because most of the time I run on automatic and don’t give a second thought of how wonderful it is. One of the reasons I like camping so much, besides the fact that it is quiet, tranquil, and smells so fresh, is that I get in contact with what little I need to make me happy. I’ve gone deep, deep into the wilderness with no more than I can carry. Water becomes a precious commodity, and I am aware of every drop I drink.

In Costa Rica, we get all sorts of opportunities to be “without” what the developed world takes for granted. Electricity pops off and on; streets are often more pothole than pavement; and it can take a year or two to get a phone line. Instead of blasting away at the injustice of it all, I find it a chance to be thankful for the simple things in life I use every day without thinking. Remember the New Year’s panic of 1999 - 2000? People obsessed about running out of water, computers crashing, and the lights going out. News reports showed people stocking up on flashlights, heaters, and gallons and gallons of water. Most people in Costa Rica just went about their day and knew the water might dry up or the lights might go out, but no one gave it much thought. And if the electricity didn’t come back on, they knew the sun would come up in the morning.

As with every case of comparing Costa Rica and developing world, I see value in both that each could learn from the other. No one was more thrilled than me to drive on smooth, paved, wide roads in the United States. But a pothole here and there is maybe a little reminder to be grateful for the part of the road that is paved. When the water comes back on, we’ll be flushing and brushing right back with the best of ‘um.

Costa Rica will never be the same on this side of town

It just doesn’t stop. Cranes go up and build and build and build over on the west side of San José. Just when a new crop of buildings are about to wrap up it up, a new bunch starts. I don’t exactly remember the ins-and-outs of “urban sprawl” in the States, but now I think I’m witnessing the Costa Rica version.

All of these photos are within a mile of each other - as the crow flies. Since the reality market is a bit in the doldrums, it is hard to imagine who is going to rent all these places? It seems as if paradise is immune to market whims. I know this is not exactly true. For sale signs and for rent sound are everywhere I look. Perhaps developers initiated a project before the market took such a dive.

In the mean time, it is interesting to watch tower after tower go up. Down the way from me a mall is adding a parking lot and some new shops. When I first arrived in Costa Rica, I could never understand how the stores made it. No one seemed to be heading to the shopping center and most left without purchases in hand. Today, cars straddle the grass and park on the sidewalks to get in. People are loaded with goods in hand when they leave. If I need to go, I make it early.

So for awhile we have to live with cranes, bulldozers, and muddy streets as the cement mixes and the nails fly. Cows and goats will have to move farther out to the country as the grass is gobbled up by commerce. This part of Costa Rica will never look the same again.

construction 6 web

I’ve got this very wise man next to me in bed

Down here in Central America, we get accustomed to our sunny mornings. Today, it is pouring rain and dark. The umbrellas pop open, and we resign to the fact that it’ll probably be a long, wet day. Addison got up at 5 a.m. sounding like the Snufalupagus from Sesame Street. I put a few nose drops in each nostril and rested him against my side. Snuggled in the dark, we both fell back asleep for an hour, until it was time to get Coco ready for school.

I unfolded myself from the blankets and hoped Addison would sleep a little longer. After zipping up my warm-up jacket, I looked over. Addison was chattering, kicking off the blankets. His dark blue eyes glowed just enough so I could see he was smiling. I reached down to pick him up. He sat up and put his arm around me, like an old man would do. He patted his hand on my shoulders. Sometimes I get the feeling that this little boy is a wise old man that was reincarnated into this soft, small body to teach me all the lessons and wisdom he gained in another life time.

After that hug, I was warm and had all I needed for the day. It didn’t seem so gloomy out anymore.

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