Addison will turn three in a few weeks, and I think I’ve gotten the hang of it. When the midwife and pediatrician told me Addison had trisomy 21, I heard the words and fell back into the sedatives from the cescarian. From that moment on, I’ve been trying to figure out: How to get him to sit up; chew; breath; sleep; walk; and talk. At times, my brain hurts.

Every time I unearth a bit of new information, what I find out is that most of the time - I already knew it. I was watching a video documentary on developing language skills, and what I saw made common sense. I know the best way to teach language to kids is through play. My daughter taught me that. In fact I taught myself that when I was a kid! So much of this I knew when I was a kid, but my big-ol’-adult-brain gets IT all muddled up and begins to worry.

Yesterday, I was working on my book, and from my office I could hear Addison chatting away as the nanny sat near by. I crept down the stairs to watch. He placed all the animals in a row and loudly talked to them, to the nanny, and whoever else would listen about some sort of story he was creating. Though none of his words made “literal” sense and he was just making sounds, it wasn’t hard to hear what he was saying.

I keep my arms outstretched to both sides and try to maintain a balance between therapy and letting Addison just be a kid. He toddles at restaurants, loves to take baths, plays at school, and most of the time figures IT out all by himself. And all I have to do is listen.

It is all too easy to make our children “projects.” That bodes even stronger for special needs kids. There’s always a skill to develop: walking, eating, speaking, fine motor skills, gross motor skills, reading, writing, social cues, social graces, bowel control, bladder control, and as the kids grow, so too does the list. Sign up for another class; throw in some more therapy. Tried yoga yet? What you don’t take him swimming? A flash at the week’s schedule and I see my life passing before me: A tired mother with a lot of miles to show on the speedometer. Does this theory work?

What I know about science could hang off key chain. Unraveling String Theory makes me dizzy, almost nauseas. Back up a few brain cells, and I’m still unsure about the theories I was just so darned positive about. My friend told me the “new” thought was to feed infants at four months when we just got most of society back to the idea that breastfeeding was good and food was bad until six months. Another one I’ve heard is that now we shouldn’t teach sign language to kid’s with speech or cognitive problems because then they won’t choose to speak because signing is easier. Oh heck. Amidst all this tossing around of intelligent ideas, I go home. Literally. I go home.

Home is where I sort it out. Home is where I watch Addison, and his older sister, in the hopes of unraveling a few ideas that work for us. We’re all a bit naive to believe that one theory works for everyone across the line. Just like the “new” study says we should be catering diets to our own body types. Duh?? We need studies for this? I think we’ve rambled too far from our own instincts and trust too many experts - some of whom are wound tighter than a Swiss watch - with OUR lives. Getting lost in what to do detracts from grounding life in, well, LIFE.

Human development is super, super complicated. Yesterday, I watched Addison struggle to stand up and play with a key that was dangling from a door. He wondered in all it’s movement and sounds. I could almost here the little brain neurons recording the experience and cataloging everything away for later use. These hundreds of tiny moments are what I file in my brain to more deeply understand the development of my son. And with the big picture of our little lives, I make decisions from that platform. On top of all this, there is my health and well-being. Being a parent to a special needs child is only a fraction of my SELF. Right now, it eats up a great chunk of my time, and I battle for my time alone like a soldier in the Revolution charging up Bunker Hill. But a balanced parent could be more important than any swimming or yoga or music class for Addison or his sister.

So on those days we have no where to go, no projects to tackle, and no class to attend, I relax in the tiny moments that could possibly be the most important things in our lives; it could be LIFE. My children are little souls first, and I try to greet each moment with as much joy and calmness as I can. I’m betting that’s one theory that will hold.

My nannies would go wacky for the playgrounds we have in the States. Just the sidewalks leading to the playgrounds are a luxury. Addison climbed and navigated everything as my sister and I took turns making sure he didn’t fall and break all those soft little bones.

After navigating the gym set, he walked over to the swing set. After grooving on the swing, he sat in a little elephant.

This special needs thing takes a toll on my back. On everyone’s back. Addison sat soundly - we thought - in the wiggly elephant. After about two minutes, we turned around to see Addison hanging half out of the thing like a parachuter who’s just realized he doesn’t want to jump and wants to get back into the plane.

The screaming ensued. My sister ran over and got him out. The little guy quickly recovered, so we thought. I took over as only a mom can do. I placed him back in his stroller. We called Emma - the dog with the very long tongue - and our group set off for home. The day had been hot and it felt good to sit in the cool living room. I counted three gashes on Addison’s face, but figured we’d managed well since no human or canine in our group ended up with a broken head or a severed thigh bone. That is….until Addison threw up on me. I’m glad most of the green pea mush/white slime (that could only be digestive juices!) landed on mine and Addison’s shirt and not my sister’s couch. The shirt was new of course.

This is just one of those “special” things that tend to round out my days and bump up against my nights.

Home is where the heart is and the car seat is where the nap is. The lull of the car and the warm sun in back seat is too much for Addison. He conks. When we first started traveling, he took this luscious two hour nap on a bed. That was over last week when he decided not to participate in any sort of sleeping activity until 6 p.m. After dozing off for one-half hour, he woke up and proceeded to scream for two hours straight.

I give him tons of credit. He’s a champ, and he’s really putting up with a lot. He played quietly with all the toys grandma has in her secret chest for two hours while I installed the printer and wireless mouse (I so want that!) on her new computer. On the way home, he began this contorted yoga thing and fell asleep a few miles before I pulled into the driveway.

And there he stayed for another 45 minutes. When he awoke, he was not refreshed and again cried for awhile. He’s getting adjusted to our new schedule. Funny thing is, I’ll be throwing him back into his old routine in less than a week. Oh what we do to these kids. It makes me tired just thinking about it.

That’s what the guy at the Newark airport said when I approached yet another security check. I’d managed the 4 a.m. wake-up call; gave Addy a high five when he woke up without a fever; jammed food in the kids; loaded up with the taxi; stood the immigration; and……well on and on.

The flight was fine except for an incredibly crabby women that scolded a thrilled group of eleven year olds traveling to the U.S. to help bring cultures closer together. I hauled the kids and all our stuff down the isles and on to customs.

Coco! We forgot Addy’s bottles on the plane!

I had been so worried about finding Addison’s socks that I forgot the black bag of Addison’s coconut water under the seat. We shuffled through customs. Coco held back tears and I sought out the first Continental agent. She called the crew. It didn’t look good. The agent got a serious look on her face and said, “I’m going to check myself.”

I stood there and tried to comfort Coco. Those bottles were the key to the rest of the trip - in fact the first few days going without much drama.

Oh my! I said. I forgot the DVD player too!

Almost at the moment I finished this sentence, the woman from Continental came walking towards us with BOTH black bags in her hand. I ran up and hugged her! I think I may have professed my love for her too, but well. I was a bit excited. The DVD player I could live without, but those bottles!

At yet another security check, the guy in Newark shouted to his co-workers that I had way too much stuff. And I did. But it was that food, all that gooey food. When I forgot to take my laptop of the bag, I was sent to another line, barefoot, hoping holding Addison and hoping Coco would hold her own and stay close.

Once I mentioned the food was for my special needs son, the guys were so nice. They checked it all out and were nice, in their rough sort-of way.

I have a doctor’s note, I said. He said he didn’t need to see it. No one looked at the note.

On we went through delays. It was quite a few hours until we found ourselves in bed our new/old land. We spent the next day catching up - as we relatives tend to do. Coco is glued to her cousin and doing all those things cousin’s do.

And to answer’s Wendy’s question, no I don’t have a nanny, but it’s sometimes this is a good thing, though challenging. We’re ala going to learn a few things while we’re here - quite a few things.

Since Addison decided to lick the play log-cabin at the birthday party yesterday, he probably picked up a bug. Exactly what was not needed two days before a day - a long day - of International airline travel. His immune system is a bit touchier than other kids, so it seems he’s always “just gotten over something” or “coming down with something.” Instead of having two or three months in between illnesses, they but up against each other like baby birds in the nest.

THEY say that we “get” what we can handle. And THEY say that we grow through challenges. At this rate, I think I’ve got it figured that I am as big as a whale, or at least an elephant.

Addison got a clean bill of health at his doctor’s office, sort of. He’s tall, but skinny - for his age group in the “Downs” category. There’s that pesky little cough, but he’s visibly stronger and more bubbly than ever. I have about five doctors I rotate around to depending on the current physical or mental need. This doctor is a wonderful woman that ushered Addy through the major surgery on this third day of life on his digestive track. She then was the pediatrician in charge of getting him off all those tubes and beeping machines, and home.

Since I needed those letters for the airline to get Addison’s food on board, I did the old “kill the bird with one stone” trick. He also needed a yearly check-up. It’s kind of fun to watch someone’s face who hasn’t seen a child in awhile.

“He’s so big!” She couldn’t get over his size.

I admit. I beamed a bit. Then came that question, the BIG one: Is he walking yet? Most Downs kids at this age are. Addison got really clinging and grasped any part of me he could while she looked down his ear tubes and throat. She has this really distinctive voice like Susan Saint James, and I think he remembered all those needles she stuck in him a few years ago.

“You can walk Addison,” she said to him as we finished the exam. He pointed to the life-size Bob the Builder in her office. I set him on the floor. “He just doesn’t want to,” she continued.

And in some ways, I believe this is true. From the time Addison was born, he has been completely content with whatever spot he was in. Instead of running over (or scooting in this case) to destroy my plants, he’d be entirely content with playing with his toes or the fringe on the carpet. Addison is an observer; he likes to watch. Yet, with any quality we posses there is probably some adjusting we all need to do to stay in balance.

I didn’t defend how much I was working with Addison. The mounds and mounds of times we walk back and forth in the living room with the baby stroller loaded with rice and rocks. I just took it in. There’s a saying that says something like a wise man can hear wisdom from any fool. I’m not saying my doctor is a fool by any means, no what I have learned is sometimes just the right message I need to hear can come from anywhere. If I get all “uppity” and “know-it-all,” I could miss a few good words that could change my life or just simply lift my spirit.

When I told the nanny the news, it was like igniting a fire under her. By the end of the day, Addison was scaling the stools and walls with almost 100% more frequency than before. News flashes from the doctors always juice the nannies into action. Sometimes we all need that extra shot of confidence and support because after two and on-half years with this guy, we can easily slip into a comfortable routine that isn’t challenging anymore. The trick is not being a fool by not listening and hearing the wisdom even fools can bring.

Ex-pat life involves airplane travel. Many lives do these days. Some of us live in New York and fly home to visit the folks. My brother travels all over Europe and the Mid-East for his job, squeezing in visits with his kids while balancing the duties of work. I’ve flown home to Minneapolis, on average, about once a year. Last year my life crumbled into a broken cookie, so I stayed put. Since then, I’ve been finding new ingredients and baking up a storm. We’re going to the homeland! Minnesota here we come.

Packing and planning for a trip to the States is an art. Not only do I have to survive a 12 to 13 hour day in airports with two kids, but I plan out my year for the “things I’ll need.” What do I need that Costa Rica couldn’t give me? Not much, but there’s a few things….and since I’m going to the land of plenty- it’s a great bonus to be able to haul them back in my suitcase. Most items I bring back are vitamin supplements that can not be sent here. I’d have to get special permission to get a box of food/vitamins/drugs, and well, nailing myself to a tree would be more pleasant than the thought of dealing with the government, it’s paperwork, and it’s spooky, deep love of stamping every thing with timbres (official seals). On past trips, I’ve hauled back a juicer, crib linen set, and all the Christmas gifts from the relatives. Everyone who lives here does it. Once, a friend told me he hauled down a side of beef. Another packed a bathroom vanity because the “selection was so awful here.”

My relatives are quite used to my odd urges of stuff I have mailed to their houses. A box will arrive; they’ll email me about the contents; I’ll check the receipt and make sure it’s all there; they place it in “my” corner and wait for the next package. Electronics are something we all haul back. On average, cameras, computers - all those kinds of things - cost an average of ten to twenty percent more. But before I can pick all that stuff up, I have to get there first.

Addison still can not swallow very well, so most of his food is blended goo of some form or another. He is also allergic to most food groups, especially grains, sugar, dairy, and so on. Liquids and gels are not permitted on flights over 3.3 ounces. Do you see the problem in this? I called the airlines to see if I would need special permission to bring on Addison’s food. When I finally found a human agent, she said I could bring as many 3.4 clear, ounce bottles of liquid I wanted. I hung up the phone and felt like I had been speaking in tongues. When I’m standing there at 6 a.m. in front of that conveyer belt and x-ray machine, the airline security guy/gal is going to let me pass with 20 bottles of liquid gels? I’m not taking any chances.

This is where that term “special” comes in with Addison. I fought it when I first settled into Down Syndrome , but now I have to admit we do need a word to communicate to security guards, educators, bus drivers, and others who don’t hang with Downs - or other kids with “special” needs that yes, we have these different needs that are out of the “normal” spectrum. My daughter will gleefully eat the disgusting ham sandwich we get on the plane for lunch, and I will be able to live on chips and a brownie. Addison, on the other hand, would choke if I gave him any of that. And if he did manage to eat it, he’d puff up like a porcupine under attack in a matter of a few hours.

Not trusting the airlines answer over the phone, I went directly to the Continental offices. Managers huddled and talked to other managers sitting somewhere in cubicles out of sight. I even brought a sample of the containers filled with Addison’s goo. The conclusion: They thought I’d be fine bringing the food on. The bottles of coconut water he likes to drink were another matter. A few scratched their heads.

Maybe you want to get a doctor’s letter about your son’s condition? Just in case.

So we’ve got a doctor’s appointment to get a letter in order to bring food on the airplane. This is what special is in the more literal sense: More time; more money; more running around. I’ll get the doctor’s note and all will be well. I’m ready to fight even the toughest, uptight, unsure, underpaid security worker out there. For I’ll be packing the best thing of all: my sense of humor. Like Twain said: The human race has one really effective weapon, and that is laughter. Now that’s special!

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!