The malls cometh to Costa Rica. Big ones and a few even bigger ones. Most have movie theaters. When I first arrived in paradise, new releases from Hollywood had this time lapse. See the new Batman? Wait six months. See a film other than something from the tanks of tinsel town? Forget about it.
There’s a theater called Sala Garbo where “artsy” films play. It’s downtown and not all that hard to get to. But I shy away from the films made in Spanish because my language skills are more on par with a seven year old rather than a spurned lover out for revenge. I’d never get it.
Now, new movies come out pretty close to when they are released in the States. Someone figured out that it’s easier to sell plastic, useless toys to children at fast food chains if the commercials - many on cable television - lined up with film’s release ALL OVER THE WORLD. In fact, Horton Hears a Who came and went so fast, we missed it.
Unfortunately, the theater close to my home takes no risks in showing films that are anything less than super-duper commercial. Big stars - you know - the formula that brings them in. If I watch closely, I can catch something that is either good Hollywood or a tad bit on the controversial side. The great thing is: it’s cheap. Half of less of what it costs to go to movies in the States.
My friend and I were the only ones in the theater for Charlie Wilson’s War. We had the best seats. Oh, how we giggled, like girlfriends do. Then, like the true mothers we are, instead of mulling over coffee or a drink, we went grocery shopping. The kids still got to get up in the morning. That means so do I.
There’s THAT word. Remember the jokes about being “retarded?” The word has become a bit taboo, but it still floats around. We’ve all gotten more politically correct and switch to words like: cognitive disabilities, mental disabilities, and learning disabilities. But THAT word is still out there.
I found most definitions in my research to include the term in some form or the word retardation, which according to an on-line dictionary is listed as follows:
(used with a plural verb) mentally retarded persons collectively (usually prec. by the): new schools for the retarded.
—Synonyms backward, disabled, handicapped.
And according to associations and books, the definitions usually are something like this:
Most individuals with Down syndrome have mental retardation in the mild (IQ 50–70) to moderate (IQ 35–50) range,[4] with individuals having Mosaic Down syndrome (explained below) typically 10–30 points higher.[5] In addition, individuals with Down syndrome can have serious abnormalities affecting any body system. They also may have a broad head and a very round face.
Down syndrome (DS) is a condition in which extra genetic material causes delays in the way a child develops, and often leads to mental retardation. It affects 1 in every 800 babies bornDown syndrome is set of mental and physical symptoms that result from having an extra copy of chromosome 21. Even though people with Down syndrome may have some physical and mental features in common, symptoms of Down syndrome can range from mild to severe. Usually, mental development and physical development are slower in people with Down syndrome than in those without it.
So there we have the word I wrestle with - retarded. The other day I was talking to a friend and we were sharing a funny story about learning, specifically crochet, which neither one of us can do. My daughter Coco has taken up the craft. My friend and I were talking about how reading the instructions from a book about learning how to crochet was like reading hyroglypihcs. I agreed. In the middle of our chatting, she used the example that at one point she felt retarded. There was no awkward silence, but an odd air fell about us. But the thing is, I think it’s me that brings in this air. I didn’t get angry or sensitive or indignant, I just felt the awkward moment. I felt uncomfortable that for even a moment my friend would have to feel uncomfortable.
The power of words. Our labels. Look back up at that definition. At the very end it says - backward. There’s the big problem with retarded. Over the years, it’s become a word to tease and judge others who didn’t do things the “right” way (whatever the heck that is).
In Costa Rica, I cringe when people say you are negro after a day in the sun. Yet it just means you are tan. But after growing up in the dawning of Civil Rights in the States, I find I am super-sensitive to terms surrounding that era. When my daughter speaks of the world and skin colors it means nothing to her about suffering, oppression, discrimination or cruelty. It’s just a way for her to tell me a story about a person she’s met or a character in a book. I’m the one with the label problem. I’m the one with the issue.
My son has this extra chromosome. I do have to find out a way to identify a learning strategy to assist him. Yes, part of THAT word is in his library. When I work with educators or talk with my friends, the idea that Addison needs extra time and understanding to do thing, hangs around us like a tag cloud. Its the history of the word and or intent that gives it power to destroy and hurt, or the ability to empower and move on.
I’ll never be able to crochet more than a string. Coco will probably learn to crochet, and then knit, and then, well…that’s the point. I would never limit my daughter, and I would never limit my son even though he has THAT thing. That EXTRA thing.
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.
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.
A crimp in my neck runs from under my skull, over my shoulders, and splinters off down the spine. I went to bed fine; woke up as I fought off a camel hogging the bed all night. Turning to the right is downright painful and the rest of life’s every day motions are annoying and stiff.
All the "little things" add up when caring for my son, especially the lifting. This is injury is an old one, and it returns when I put too many straws on my back.
This morning Addison’s nanny had a crimp in her neck. Same side. We look like a pair of melted salt and pepper shakers. We both have to turn our whole body in order to use it. Reaching down to pick up Addison makes us wince and huff out funny noises like: oooffff….aaahhhgggg…bluuuufff. Our house smells like menthol rub. We laugh at how ridiculous we look.
As we finished breakfast, I told the nanny how I once read once that everyone who’s ever sat in a chair or lived in a house or used the changing room at the department store leaves their energy behind. So, we decided that the guy who used to live in this house must have had neck problems. Either that or it’s in the water.
Addison was sitting on the floor and signaled he wanted to be picked up.
Maybe we can get a camel to haul him around. I’ve seen camels trained to get down on their knees. Addy could climb up and fit perfectly between those two humps. In the meantime, I huffed and puffed and grunted as I reached down for my son to take a little walk in the sun.
Sometimes I have thoughts I don’t want to admit. When I was in the hospital and sat day after day next to Addison existing, surviving and sometimes barely breathing in his incubator for a month after his birth, I watched other babies come in the NICU - healthy babies. Relatives tapped on the windows and pointed at their proud offspring. Then a day or two later, the babies left. They always left. Each bundle wrapped in pink or blue. Every family off to a brand, new start.
I didn’t wish I had one those kids. It was funny how resolved and settled with the fact that Down Syndrome was a part of our life like my wrists and my spine. Down Syndrome was a part of me as much as it was a part of Addison. A child’s a lot of work, no matter the order of chrmosomes.
No, the feeling that I had was this: I wished one of those babies that left all cuddly and secure in their parent’s arms would have Down Syndrome. Then, I’d have someone to talk to. Even now, I look at women pregnant and think, maybe she’ll have a child with Downs. Then…then…I wouldn’t feel so alone. I’d have this chum and confidant to talk to and we could bond over heart surgeries and digestive conditions and therapists. These and other "icky" feelings creep into my thoughts once and awhile, and I want to deny they exist and beat them with a stick.
Do you wish Addison didn’t have Down Syndrome? I get that sometimes, and I do wonder that sometimes. What would life be without Down Syndrome? It would be without Addison. Period. It would be without Addison.
I really don’t "wish" Down Syndrome on anyone. When new babies arrive healthy, I am thrilled. I do have connections and know great families living with Downs. And after those fleeting moments of doubts, I get on with it. Both of my children delivered these grand lessons exactly when I needed it: My daughter has taught me patience; Addison has taught me to be a warrrior. They both have taught me how to love. And that, I am proud to admit.
I sat down in Addison’s school and watched the children stream in for morning classes. Tiny tots kissed their mother or father good-bye and grasping the hand of a teacher, following the flow of students to the garden to play in the morning sunshine.As I waiting for a free moment to talk to Addison’s teacher, another mother sat next to me. Her daughter, Sophia, had Down Syndrome. She was a beautiful girl in pink stripes and pink tennis shoes. She hung close to her mother as she too watched the children pass.The mother explained she was there to look at the school; her daughter was already enrolled somewhere else. A teacher reached out her hand and Sophia walked away to take a look at the school.What to do we talk about? Us "Down" mothers? Instead of the discussing shirt sizes or what words our children are saying, we share stories about hospitals, therapists, and tongue size.So, did you spend time in the hospital?Does your child have small ear and nose tubes?Does she sleep through the night?Does he walk or crawl yet?Swallow food?Special shoes?We nod in acceptance of each other like two old war veterans sharing a story that we can only understand. So much goes unsaid and instead passes through our hearts. Addison’s teacher arrived and Sophia’s mom wandered off to find her daughter. Funny, when Addison enrolled in this school, there were no children with Down Syndrome, now there may be three. I always knew he’d be a ground breaker, a leader in his field. And I’ll keep bringing up the troops to support him.
Mingling with a group of new people the other night, I was asked several times: What do you do?
I stumbled over the answer. A few times, I actually didn’t know what to say. This is when I become torn on telling someone I’m meeting for the first time that my son has Down Syndrome. It’s a huge part of my life. And for much of the day, it defines what I do. I know this will change, but for the moment getting a little human to walk -connecting all those neurons - is no small task. Then there are times I think I should be more stoic and not mention it at all.
The thing that I like about mentioning that my son has Down Syndrome is that it explains a lot, and it cuts through a lot of the bullsh__. I relax, and I don’t have to talk so much about why I’m not getting so much done out there in the "real" world. People seem to have an immediate understanding of some of the challenges I may encounter in caring for a child with special needs.
So, I’m learning to trust some sort of equipment in my brain that intuitively knows when to reveal this THING about my life. I guess it’s usually if I feel the person and I have a chance at connecting at a level that does not include pity and instead empathy. Maybe I feel there’s a chance I will get to know this person more, and in that case, why beat around the bush?
One time later in the evening - and I thought this was hilarious- I got asked that question again: What do you do?
I’m a mother.
Pop went the balloon. Pause went the light and happy conversation. The look on his face said: And that’s it?
Most of the time, yeah, that’s it.
I then followed up with the fact that I was a writer. Ahhh…his head nodded and welcomed me back to the conversation.
I didn’t stay much longer; I had to get to bed. My day job gets me up early.
Tomorrow, my little guy goes off to school. I filled out forms - just like the other moms did. I gathered papers from doctors - just like the other moms did. I got two little passport photos for his file - just like the other moms did. I paid the tuition - just like the other moms did.
I didn’t linger long on the questionaire where it asked what Addison can and can not do:
Walk?
No.
Out of diapers?
No.
Speak?
No.
Eat by himself.
No.
Draw?
Finally I could check yes.
I understand teachers need to know about bathroom, physical, and linguistic basics, and I’ve soften my defensive protests when it comes to comparing Addison to his peers. My son may not be able to run around at recess like the rest of the kids, but how many dance like the dickens to the entire Shakira CD? Or how many kids act out several folk songs in Spanish? And what kid, wherever he goes, has gaggles of girls fawning over him? Maybe I could suggest a few blank on next years form?
Is this kid a complete, fantastic original?
Yes.
Funny?
Yes.
Speaks four languages in gurgly babbles?
Yes.
Eats avocados; blueberries, papaya, and carrots with joy?
Yes.
Faced major medical obstacles with flying colors?
Yes.
Tomorrow, Addison will get on the bus, though he’ll be carried and need extra help, he’ll join the ranks of "normal" while staying true to his SELF.
