Although Costa Rica has over 800 species of birds at certain times of the year, it’s good to see some old favorites. They are like old friends. I pointed out a robin to my kids. We stopped and slowly crept closer in hopes of getting a look at the rare creature. The big orange breasted bird kept hopping just far enough ahead of us to stay distant. I told Coco that’s how we know it’s spring here.
Her spring is different. Instead of melting snow, she feels the Trade Winds begin in December. And the rain stops. There is the same feeling of relief as we know we’ll be getting a break from the deluge of rain and rain. It compares nothing to trudging through the winter months of snow, but she can relate a little bit.
These babies were nesting out on my mother’s patio. A sure sign spring and summer are here. The same thing happens in Costa Rica. We have nesting birds right outside our window at home. The same things seem to happen everywhere: life, death, happiness, sorrow. It’s just the packaging is different from a red robin’s breast to the color or our skin to the foods we eat. We all still eat, love, give life, and screw it up and bounce back again.
After holding Addison up to the nest, we hid in the living room so the mother could return. I couldn’t tell exactly what kind of bird the mother was, but the babies chirped and held open their beaks again, waiting for life to come - like it always does.
There are times I hold my son, often late at night, when it’s sometimes rough; when he isn’t breathing well; and I wonder what I am doing. He is so fragile in my arms as he struggles to sleep and to breath in peace. I am in complete control of his life. Sometimes I am afraid, and I don’t know what I am doing. Sometimes I want to quit IT all.
At 1 a.m. I have to make decisions I don’t want to make. His chest works too hard to get air. His nose blocks oxygen that could give him rest. There’s a closet full of drugs, and they really don’t work. Not really. I’ve tried.
A slight fever made him warm to my touch. I stripped his clothing and began to massage his tired muscles and bones. He laughs a bit while still asleep, when I touch under his arms. I talk to him and tell him to relax; to sleep; to be O.K.
I think about how much I am not going to be able to do in the morning. I won’t check anything off my list. I’ll be tired. As the rage of all the injustice of this moves up through my chest and into my throat, the only thing that saves me is remembering that this is only moment I have. This one right now. It is almost 3 a.m. I put his turtle t-shirt back on and prop him on some pillows. He sleeps. He finally sleeps.
In the morning the mucus pours out of his nose, and he tries to clear his throat but he can’t. His muscles are too soft; his tongue a bit too big. He eats breakfast quietly, yet slowly he comes to life. His eyes become bright; he begins to smile. He kisses his sister and hugs her lap as she eats her pancake. I take him to school, and he waves me a kiss good-bye. I drive home. I go to sleep because that is all I have and the power of the love he brings to each moment will heal us all.
Some days I want to do “therapy” with my son like I want to I want to jump into wet cement and stand there until it dries. I had a made out of handmade rubber, material, and a frame of metal. This specially developed “jumping” machine can be torture - for all involved, especially if Addison wants nothing to do with it. I mean if someone built a big bouncy, bungee-like stanchion for me (or I imagine any adult), what fun we’d have! Imagine once a day, stepping into this contraption and swinging to and fro as the the stress melted off your back because it felt like you were dangling in a cradle. Addison on the other hand, would rather play with the utensil draw in the kitchen or read his Clifford books.
I set up a treadmill under the seat. The catch is that the treadmill is not electric. I have to sit on the floor and roll my hands against the rubber and one of the nannies has to sing non-stop with over-the-top enthusiasm, plus play peek-a-boo to get the child to move his legs instead of hang there like a possum. Like I said…..some days I’d choose the wet cement. The ten to twenty minutes on this machine doesn’t cut the whole mustard in Addison’s development. It’s valuable, but there’s roughly eleven more hours in this child’s day. I’m always looking for a chance to mix fun with therapy, so then, those days when I’m just too tired to do the bungee/torture machine, I feel O.K because there were a few activities along the line that got him moving.
Watching children’s cartoons is right up there with standing in cement. And I know, I know. All the studies say those fast paced commercials can damage brain development, but so can an overtired single mother who’s starting to argue with the stuffed bears. At 4 p.m., this show called High Five comes on. A few days a week, Addison watches it. He mimics the signs right along with the over-perky singers, and also stands a lot through the program because he’s having so much fun he forgets what he’s doing.
Then I remembered the Internet. I found a spot in the house where Addison could stand and focus upwards. I set the laptop on a table and found a song about the body on High Five, one of Addison’s favorite. He forgot where he was and moved his feet for almost one-half hour. This is a long time for him. It hurts learning to walk, plus it gets tiring really fast. He forgets all that and watches (without commercial interruption!) for as long as the connection is good. Who can resist this upbeat stuff? I mean it’s in a range everyone can sing, and it’s infectiously bouncy. Unlike that machine in the corner of our room, which calls out each day: Come! Swing with me! Do this! It’s good for you!
Vendors beckoned people in the mall to try their product. And, it was crowded. I needed to pay a bill and pick up something at the grocery store, so there I was, one of the many.
I noticed a boy, about eleven or twelve standing behind his mother. She was trying some new-fangled coffee. He had Down Syndrome. I paused and stood behind a kiosk selling fountains, crystals, and Buddhas. I didn’t want to look creepy by staring, but there is this need to try to figure out in some way what is ahead. I’ve seen hundreds, possibly thousands of photos of kids with trisomy 21, and I’m accustomed to the one-dimensional view. My son is so familiar to me, but sometimes the future seems so unknown. Will he live with me for the rest of his life? Drive? Be tall? Short? I don’t have as much of this feeling with my daughter. She also reveals little glimpses of herself as a teenager by rolling her eyes at me, being a bit snippy with me, or wanting to put on make-up before we go shopping.Addison’s development stays so much in the now, I can’t clearly put this picture together of what is all coming. I mean I don’t have his charts done or obsess what he’s going to “be” or “look like.” It’s just a small curiosity that surfaces, especially when I see another child with Downs.
The woman handing out the coffee gave the boy a yellow balloon. He waited behind his mother as she tried another flavor. The balloon was on a stick and he flapped it back and forth with the intent and focus of a small child that had never seen such a thing before. Then, the vendor asked how he was. He got a little shy and answered and then took a few steps back to his mother. He placed his hand on her back and whispered something into her ear. They smiled together as if they knew some grand secret. Tears tingled behind behind eyes. The mother took her coffee sample and the pair walked off to the next booth. I turned and as I left, I had a better sense of exactly what I was getting into.
At Addison’s last therapy session, I confessed that it just didn’t seem like he was progressing. At times the milestones seem so slow in coming, it feels like we’ve pushed the pause button.
“No. No,” said the therapist as he taped animals and toys to the white board and encouraged Addy to climb up to them. “His development is really good. What Addison has is a lot of quality in each step. It is better to develop slowly and do it correctly than to rush and then walk all funny the rest of his life.”
I know that. I knew that. And I am certain Addison will walk. There’s not a shred of doubt in me, and I don’t walk circles around the house mumbling how slow it’s going. We do our daily exercises; cherish Addy in our little family fold; take baths, play, and eat like other kids. But I never knew it could be this slow. All of a sudden another 3 or 4 months go by and I’m a little surprised he’s not walking yet.
As I watch my son learn to walk, I am humbled and educated at the same time at what an incredible feat it is. I see soldiers come home from Iraq without legs, and they are right in the position of my son. The muscles, the neurons, the balance, determination, and the concentration it takes to connect pieces looks effortless when we have all our parts, but it’s is one of the hardest tasks out there when you’ve got a missing leg or born with an extra chromosome. With Addison’s older sister, I thought about walking for a few months, like every mother does. At eleven months she was up. And down. And up again. Then she was off, and I never had to think about it again.
The parallels I can apply to my own life are endless. And as I watch Addy climb that mountain and come face to face with the ladybug; I learn how to approach my new life with tranquility, even when I fall. And when I stumble so far, so far down that I think I can’t find the strength to put one foot in front of another, there’s my little son leading the way and teaching me how to put one foot in front of the other as if to say: Hit the play button mom! Get on with it!
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.
