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

I reached into my purse to pull out my bank card to pay for my groceries. It wasn’t there. With a load full of week’s compras already bundled up in bunch of plastic bags (I forgot my cloth ones!), the bag boy and the cashier stared at me waiting for a cue from me. Instead of panicking and speaking to the woman in garbled Spanglish (I completely forget to conjugate or remember where to put pronouns in Spanish when I am under stress), I handed her the blue card instead, fetched my keys from my pocket, and began walking to the car with the young man pushing my cart of goods. I smiled and handed him a few hundred colones as he slammed the heavy back door of the car shut.

I sat in the driver’s seat. It was near noon, and the inside of the car felt like a sauna on low. I rolled down the windows and began rifling through my purse. Blue card, green card, flower card, driver’s license with bad picture of me on it card, cedula with another bad picture of me on it.* No yellow card. Was it time to panic?

Where was I last? Gas. Gas station. All gas stations are served by attendants in Costa Rica. There’s no self-service. Every time I put gas on a card, I am conscious of getting back that card, putting it in it’s slot, and remembering to be grateful for the black gold I just paid $100 for. This time there was a gap: Between that second I signed the slip and put the wallet back in my purse, I couldn’t remember. Why is that? Why is it when we loose our keys, misplace the checkbook, or forget where we hid that spare ten dollars, there is a gap in the exact moment we did it. If I could visualize that moment, I’d know exactly where the card or keys or phone number on the back of the envelope was. Try as I might, I blanked right after the attendant smiled at me and the guy behind me honked impatiently for me to get a move on.

I went back to the station. The office was closed. A group of kind, red-shirted Texaco service station attendants surrounded me and assured me that if the card was left with them it was in the office. I’d have to wait until morning. I went home and looked through everything again.

So what on earth does this have to do with Down Syndrome? Nothing. And everything. Addison didn’t miraculously say: Mom you’re card has fallen down the side of the passenger’s seat. Or, Mom, you’re a mess. Get a grip have a cup of tea; call it a night and know IT’s all O.k. But what Down Syndrome has done for me is taken me so far into holes and tunnels and mysteries, a missing credit card seems manageable. My panic button has been set to low. It takes a lot to get me rattled.

I did go to sleep and didn’t loose a wink. I got up still not knowing where my card was. A part of me wanted to freak out and call the bank and cancel the card (and what a pain it is!), and I suppose it was a bit reckless, but I just knew it was safe somewhere. I filled the gap with certainty. I just knew.

I called the gas station first thing in the morning, it wasn’t there. At nine a.m. the next morning, I gave myself one more chance to find it before I would call the bank. Then, a vision flashed before me like a dream I try to hold onto when I wake up. I remembered just enough. I went out to the car and sure enough, there it was. Right under the rug on the floor of the car. It had fallen down the side of the passenger’s seat. I held it up in victory. I showed it to Addison. He was in the middle of an animal card game and could have cared less.

*And why do the renewal of all cards that require a photo come due when I am chubby and pregnant? Of this I am not certain.

Put a burning candle in a box and let the children run wild in the streets - now that’s Costa Rican fun!

As Costa Rica’s Independence Day - and all of Central America’s - approaches, the excitement flaps in the flags and flutters in the faroles. And is a farol what you ask? A lantern that lights our way of course.

Every year school children around Central America stick a candle in a lantern and walk with a pole that looks like the crook of a sheperd’s staff on the night before the 15th. Since the holiday is on a Monday this year, school children around the country could be seen today dressed in Typico clothes while toting their farol at their side. The farol is most dramatic at night of course when the candles are more potent.

Some parents (probably terrified at the fire hazard possibilities) opt for those light sticks. Those light sticks are hard to find. My kids always end up with candles. The first year my daughter went, one of the children’s lantern lit on fire. It made the parading of children in the pouring rain along the side of the dark road that much more exciting.

My daughter’s lantern was the traditional “buy-the-box-at-the-store” and then decorate the rest at home. My son got the bottom of a box. The kids will also dance and eat tortillas and beans and rice. But come the 14th, we’ll light up the faroles right along with the rest of Central America in thanks for our collective independence from Spain. We’ve come a long way baby.

Real Costa Ricans drink coffee out of a bag hanging from a wooden stand

I’m giving up coffee by default. My trusty old espresso machine is spitting back at me. Instead of an O.k. cup of espresso (it’s was never that great of machine brand new), I get a ground filled cup of sludge. For awhile I put up with the grounds in my teeth, splattered all over the clock and the wall, and drank the not-quite-Greek-though-not quite-Italian cup of joe.

I even took it apart as far as I could, which wasn’t very far as I couldn’t get most of the screws out. A box of baking soda and a jar of vinegar later, same result. When I lived downtown, I found this guy who could fix small appliances. It was a great shop in the 1/2 basement on Paseo Colon. I had really old blender from the 60s that needed a new thingamajig (can you believe this is a word??!!). One of my nannies tells me there’s a guy in the next town over that can fix gadgets. So do I want to drive around a hot little town looking for a guy that might be there in some dinky shop that I have “loose” directions to that can maybe fix it after I leave it for two weeks and then drive all the way back to find out it’s not fixable?

Small appliances in Costa Rica are way over priced for the marginal value gotten back. That old blender would have cost me $200 to replace. In Hipermas, I rambled down the coffee maker isle and saw a budget version of an expresso machine for $50, which wasn’t too bad but I passed.

I think when something breaks it’s always a great time to step and back and question if this broken piece of metal, wood, or plastic was a good thing in my life anyway. I’m one of those people that are not effected by coffee unless I drink four big ol’American sized cups. I just sooooo like the taste. Since I found it was not that hard to give up and chalked one up for “probably not an addiction” side of the column.

Now, I am pulling out the good old Costa Rican way of making coffee: A bag and a wooden stand. Put the coffee in bag; boil water; add coffee. If you were Costa Rican, you’d probably add a couple scoops of sugar. It’s not a bad cup of coffee. And the cost? Get out of town! The only disadvantage is that bag hangs around wet all day, and it can get funky if not dried well. But again, the cost of a new one is probably 50 cents to one dollar.

When I do make a cup, I still use the small espresso cup for that feel. Perhaps this is what smoker’s feel like when they chew on toothpicks after quitting. I went to wash the cup and the faucet was dry. As the dishes pile up I wonder, so what now? I have to step back and figure out if water is a good thing or not in my life? Perhaps this is too much work.

I think I’ll run to the corner to get an espresso.

A scarf is perfect accessory in the wild jungles of Costa Rica

Going out for a walk or run in Costa Rica is a challenge, as I’ve mentioned many times before. There’s rarely a park to sneak out to - except for the la Sabana - and sidewalks are as rare as jellybeans at Christmas. In lieu of a good place to pound my feet and shake my tail feathers, I sometimes end up at the mall. Guess what? Even that is ripped apart and a mess. The tried and true pavement I could depend on is now mud, re-bar, and trucks. Lots and lots of trucks. (And don’t forget the construction guys….more on them another day.)

I used to be able to circle the mall early in the morning because there were no cars and it was pretty safe - a kind of suburban-gentrified-Central American, hiking trail. I trotted over to the mecca of commerce and forgot how refreshing it can be to be running without drivers pretending you don’t exist.

As I approached the mall, I forgot also how entertaining the scenery can be. Besides getting in a bit of work out, I found new and exciting uses for the plethora of sequenced scarves I have hanging in the back of my closet. (I’m just kidding, I only have two sequenced scarves.) What mother of the jungle would ever want to live without one?

Lock up your sugar cubes and saltines when traveling in Costa Rica or this guy might take them

The birthday party was wild. Sure we had fun, but one of the guests of honor was wild - a real wild animal. This coati mundi was rescued, nurtured back to health and now lives in the woods yet sticks close to family that saved it. What coati mundi - pizote - shouldn’t get a few gifts for his one-year adoption day?

Coatis are related to the raccoons. It’s easy to see the resemblance in the movements and appetite. This fellow was especially fond of sugar. If you are traveling and stay in a beach house or rental cabin with an open-air kitchen, these critters will walk right in and take what they can get. Some like salty; some like sweet. If you don’t lock it up, and this omnivore can smell it and climb to it, consider it there’s.

So it’s not recommended to feed these animals. They can become a little too aggressive over time if they know people give them food. This farm has in-depth experience with animals and is helping to reintroduce the animal back into an environment where it will thrive. Unfortunately, the trauma many of these animals go through such as loss of their mother or abuse (because someone thought it was a cute pet), disrupts the natural instincts of the animals and they will only be able to return to the wild in a part-time manner.

Coco got a good scratch on her arm when the Coati wandered over to see if she was holding out with more sugar. I told her no matter how “cute” and tame the animal looks, it still is a wild animal and petting them can be a tough exercise if not handled by an experience person.

Some day, if the right female comes along, this guy may wander off in the woods and never come back. If so he’ll probably be ready to live it up in the wild. Until then, more sugar anyone?

A waterfall can make a sleepless night easier

Addison can have a bad night sleeping with a snap of the fingers. For a few hours, there was no sound coming from his side of the bed. Then he started swallowing non-stop as if someone had turned on a little faucet behind his nose. I could tell it was uncomfortable for him. Every hour until two in the morning, he’d wake up crying or just give an out-right scream.

In the midst of feeling tired and not wanting to be a mother - or anything - and answer questions and make lunch, I saw this waterfall while I was out this morning. The sound never stopped and reminded me of the needs of my kids and how I am pulled over the rocks hour after hour. But down below the beating water, there is a calmer pool of water. I imagined diving in and letting the cascade hit on my back and the top of my head.

My attempt at an hour nap got me five minutes. Addison slept with me and just as I was dozing into that deep sleep that makes your eyes fly back in forth in REM heaven, he coughed. Water may be a strong force, but it’s got nothing on kids.

This is your brain on cell phones

I do things I know are not good for me. Like for example yesterday, for lunch I had potato chips and sour cream. This is not part of a balanced diet. I skip exercise and go without flossing.

So now we have cell phones. Our newest treat and tantalizing temptress. Beside looking silly while we wander up and down grocery isles talking to a tiny piece of electronic equipment (need I mention how goofy people look talking to the air with a Blue Tooth thing on their head??!), the things are going to land us with so many more diseases and ailments. In ten years we’ll be scratching our heads and saying: Gee, I wonder what caused all this brain cancer? Does diabetes and sugar consumption ring a bell? Television and lack of exercise?

If you haven’t seen this video, you perhaps will understand like I did, that these little “jabber-walkies” are more powerful than we ever suspected. I’ve been reading about the tumor causing little beasts for years. I still have cell phone, though I’m considering getting a lead case for it. Watch this video and put two and two together. I was amazed. Plus I swore I’d never have left-over melted chocolate and a glass of milk for dinner again.


Pop Corn téléphone portable micro-ondes
Cargado por sassiere

**Only residents are allowed to apply for a cellular phone line in Costa Rica. But do not worry, old lines are bought and sold under the table all the time until your proper cedula is in hand.

Working out a few glitches

We’ll be working out a few hiccups and bubbles at MotherJungle. As soon as all is clear on the runway, we’ll be back with those stories that will either change the world, tickle your senses, or make you fall asleep right in front of your computer screen.

I’ve discovered icicles in Costa Rica

Addison sat happily among a pile of rocks, putting a few in a cup and then dumping them out. When I walked out to see him, the nanny started claiming she’d seen this gorgeous flower in the neighbor’s yard. This nanny almost walks without touching the ground when she talks about planting or blooms or roots. She waved me over to look.

I went over to the wall and stood on my tiptoes to peek over the wet cement wall. I expected to see another flower I’ve seen a million times before. There is that first moment when I see something I’ve never seen before. Whether it’s a piece of art, or a new face, or a couch I’m thinking about buying. If I quite my mind long enough to stop arguing with my past and wrestling with my future, I tune into this frequency that aligns me with this PLACE. I think it’s the place flowers come from and trees and children and baby bunnies. Pure ISness, for lack of a better word.

For a second, I saw snow fairies and ice castles. Before the nanny spoke again, in those few seconds, I was in that place where I don’t want to do anything or be anything or name anything. This beautiful crisp white heliconia hid in the depths of a moist, small garden. Even my nanny had never seen it before. We turned our attention back to Addison and went on with the afternoon.

As we were about to leave, the nanny walked onto the patio with two of the stalks from this plant in her hand. The theory goes in Costa Rica, stick it in the ground and it shall grow. And I’ve got to say that works almost 80% of the time. And when it doesn’t work, you just try it again.

So now, with the help of that PLACE, and a good hole I shall dig, I will have icicles growing in my yard.

Special needs can be met in Costa Rica if you look around and avoid jumping off picnic tables

The old swing set made a perfect parallel bar. Motivated by the summer Olympics on television, I unfastened the metal swings and threw them aside in the grass. The picnic table skittered across the grass as I pulled into position, two feet in front of the metal bar. I stood on top of the far end of the table; ran to gain momentum and jumped. I’d hang and propel back and forth with my body until the inertia wore off. In my mind I was a great gymnast. In reality, I probably looked like a nine year old running off a picnic table and hanging there.

I pulled the table back. I was getting more confident. I climbed atop the weathered wood and stared at the crusty metal bar. There are some images we remember that are odd. Like why do I remember watching my mother take the pot roast out of the oven? Or my father frying baloney over the flames of the kitchen stove? Then there are memories I know exactly why I remember them because the action bordered on being something so stupid the Universe just needed to be sure I would never repeat that action again.

Perhaps it was the sweat. Perhaps I did one jump too many. As I flew threw the air (all three feet), I looked up to watch my hands reach for the red bar as the palms of my hands slid against the glossy paint without grabbing on. I fell flat on my back with one exception: My arm propped under my shoulder blade like a broken spear. My wrist had broken the fall and folded in half like a Swiss knife snaps back into it’s case. That was my one and only broken limb. Every day my son navigates the world with limbs that don’t work like he wants them to. I was challenged over not being able to pour Kool-Aid. He struggles a million moments a day to get his muscles and nerves to all work together to just take one step. His feet drag behind him and his knees just won’t bend with strength.

When I moved to Costa Rica, I quickly discovered some of the benefits of living here that could help someone with special needs, whether that need was temporary like a broken leg or more permanent like Muscular Dystrophy. Most homes come with a “maid’s” room. It’s a small cuarto (usually near the laundry for obvious reasons), and it almost always has a bathroom. The room can be no bigger than the size of mattress, but that room served our family tremendously when my mother-in-law came to live with us. After six months in Costa Rica, she broke her hip. Luckily we found a house with a maid’s room big enough to also put her T.V. and a desk. And since it was on the first floor, so she could walk to the kitchen and patio without navigating many steps.

This one architectural feature proves to be a bigger bonus than I’d imagined. And add in that most homes have several bathrooms in addition to the one off the maid’s room. For a family of five growing up, we always had one. What a luxury to have kids in a separate place to make their watery messes! What a necessity to have my former mother-in-law on a different floor and back by the kitchen!

I quit jumping off picnic tables a long time ago, but now I have to navigate the world of a special needs child, plus those holes in the sidewalk and molded over driveways (in the rainy season) are always testing my balance.

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