It’s easy to wake up and figure out what we don’t have: no sunshine, no money, no husband, no eggs for breakfast, no sugar for my coffee, no time to fit it all in.

There is this story of a man who has five children. He’s going crazy because his house is too small. He goes to the village wise man and asks him for a solution. The wise man tells him to move his cow into the house.

Excuse me?

But the wise man was wise, so the man did it. But he was so upset at having so much less room in house, he went back to the wise man. The wise told him to put his horse in the house. Bewildered and a tad upset, he marched home and told his wife they needed to bring the horse in the house. Now, it was really getting crowded. The man went back in hopes the wise man came to his senses with a different solution.

The wise man then instructed him to put his sheep and chickens in the house. The man almost lost it, but figured since he’d gone this far he would do as the wise man said. Needless to say, the wife and kids were quite unhappy.

He returns to the wise man and says: Man, you gotta help me. This is just not working! The wise man then tells him to take all the animals out of his house. The man goes home; takes all the animals out; and can’t believe how big his house is!

We have a choice.

1. Appreciate what we have, thus opening the door for more to come.

2. Whine about what we don’t have until we loose it and THEN we’ll appreciate it.

Since I’ve been working number one most of my life, I’ve skipped on to number 2. And in case I ever forget all the wonderful gifts and joy in my life, I have messages everywhere telling me to get it together and appreciate.

Addison struggles every day to walk. I use my legs without a thought. Today, I am thankful for my legs. Addison has developmental speech challenges. I babble on like a chicken most of the time. Today, I am grateful for my normal sized tongue, and my teeth, and my ability to speak.

Every day I walk and talk is a downright miracle. That’s what it’s like to live with Down Syndrome.

(And in case you want another miracle, check this out.)

In this grocery store I go to in Costa Rica, when an overstocked item isn’t moving, the manager has the box boy/girl get out the yellow tape (the kind that looks just like the yellow police tape they use in crime scenes) and adhere some sort of oferta. Sometimes I can get two boxes of cookies for the price of one, but other times I’ll chuckle at the odd mix of items taped together. Once I bought plastic containers and got Christmas mugs. I mean who can resist having more plastic bowls and lids crowding the cupboard with also getting Christmas gifts for the bus driver, teacher, and ballet instructor all in one?

That’s what Down Syndrome is like. Each parent walks out with this child that has these “things” added to them as if a quirky store manager added them to their gene pool at the last second. Almost all kids will have a problem with a larger tongue, but the size and amount of difference could be enormous in the implications of speech development and sleeping through the night. Maybe a child will have heart problems, or vision problems, or always need support walking, or hearing problems, or shorter limbs, or severe retardation, or……..

Upon leaving the hospital with Addison, I could perhaps, perhaps, pinpoint two characteristics he had taped around his development. It will - and shall - take years and years to unravel all of Addison’s potential, and the paths he takes to adulthood. Now that we’re into our third year of “Down Syndrome-hood” I can pinpoint a few more and feel accuracy with my diagnosis. Yes, my diagnosis. Doctor’s are in invaluable tool to helping me sort out all the bargains and mystery products attached to Addison’s development. But I make the diagnosis and feel quite qualified to do so. I live with this thing 7/24/365.

Addison happens to have a slow path to walking. It’s very visible and obvious that Addison doesn’t walk. And I get both ends of concern and encouragement. Some think Addison is doing perfectly. A British woman I met the other night has a niece with Downs and said in that accent that makes all English people sound confident and delightfully poignant: Of course he’s not walking yet! Goodness he had Down Syndrome! My niece didn’t walk until she was four. Then there are others who are so concerned that he’s not walking, surely there must be something more we, which is me, can do. For the life of me, I can’t think of it.

Addison’s slow-to-walk “thing” also lends to support the fact that he just doesn’t digest food very well. If the leg muscles are slow, so must be the digestive muscles. And since he had major surgery on this part of his body at birth to correct a system that grew all wrong. I can’t help but think the development of those little thingies that make bacteria, digest food, and assimilate nutrition are a bit off too.

All of society has a hard time watching anyone not eat. Try it. Sit with a group of people eating and don’t eat. It’s socially important we almost panic when someone doesn’t eat. The grandma serving up a third slice of apple pie is just an exaggerated example of what we all feel: Eat and we shall bond! I love you if you eat what I give you! I feel funny if you don’t eat. This includes me.

A dear friend of mine in her late 80s developed a severe problem with her esophagus and couldn’t swallow. Anything. Sitting with her while I chowed down was terribly uncomfortable. Although I grew accustomed to pouring her food into a bag which went into a tube in her stomach, I always felt unease at eating in front of her.

Addison can only eat certain things. I didn’t make up his diet out of the blue. This plan came out of years of living with this child (24/7/365) and going years without a good night’s sleep. Finally, I have a system that works. Not only doesn’t Addison sleep, but he gets pretty darned good nutrition. It’s just different than what we’re used to. A lot of things society thinks he should have, I forbid because he either chokes, or he’s up all night because his system can’t digest it and that means his overall development slows. It also means I don’t sleep. An overtired parent isn’t good for any child’s development.

Addison’s cold zapped me back to hard-learned lessons. My hope the mucus would run out of his nose like any other child, and we’d have a few restless nights vanished as I spent the night trying to keep the child breathing and watched the clock tick as my hopes for any sleep left with the rising sun.  A long stretch of “progress” was quickly interrupted with reminders of how fast Addison can turn sick again. Respiratory problems are one of our Down Syndrome “things.”

But the next night was better than the last. And that too, is how it goes with Down Syndrome, day by day, poco a poco, we get to that place of walking and talking and eating like every one else. Yet, I have a sneaking feeling we aren’t like everyone else at all. A diagnosis I feel quite happy to live with.

I think I figured out what all that crying was about. While I was pregnant with Addison, I knew there was a chance he’d be born with Down Syndrome. However, since we knew with 90 percent certainty that he’d need surgery, I pushed the 30 to 40 percent chance he’d be born with the extra chromosome somewhere in the back of my mind. I could research about the surgery, but when I looked at the Down Syndrome sites, I couldn’t bear it. It was too much emotional and intellectual information all at once.

Then he was born.

The moment I touched his pudgy little arm, I knew. I didn’t have to be told anything. And I cried. Yes, I cried. Grief was everywhere I looked. I cried alone in the hospital when I couldn’t figure out how to turn off the florescent light above my bed; I cried when I saw Addison with all those tubes, stitches, and machines attached to him. I cried when my eggs were runny.

I knew it wasn’t about the eggs. What do parents grieve when we get the “news” that our child has something “wrong” with them? After three years of therapists, doctors, natural-paths, swimming instructors, yoga instructors, well-intended friends, concerned relatives, teachers, and even the clerk in the pharmacy that has a niece with Down Syndrome, I think I’ve honed in on all that grief: When Addison was born, the gig was up. And I knew it. No more hiding behind the “normal” milestones and traditions I got my juice from. Coco walked at eleven months! Coco can color in the lines! And talk! And no more diapers! I can no longer compare myself to the world of what I used to consider “normal.” If I was an odd duck before my son was born, now I’m a duck living in the dessert with no pond to paddle in. The terrain looks a little bit familiar, but I’ve got to re-figure this map of life I was given.

From the moment I knew, I knew I’d have to change. For him. And for her. So the tears were really for me. Addison awoke the real warrior in me and forced the Cowardly Lion to shed her suit and go hunting in other lands. Addison has more courage than any old character from Oz. And as I shed my paws and whiskers, I don a new suit of Light and laughter.

Roar.

Then there’s the sibling. Coco.

My daughter’s been a full-fledged member of the drama since the beginning. I’ve hid nothing yet tried to balance what exactly it is a four year old can handle. Since I learned that there was something “wrong” with the fetus, Coco’s been absorbing and assimilating as best she can. Her reaction to the news that mami couldn’t leave the house for two months and her new sibling probably wouldn’t be coming home for awhile manifested into panic attacks when it rained. The funny thing about living in Costa Rica is that it rains an awful lot.

After a month in the hospital, I finally brought her brother home. For awhile, life passed with as normal as it gets with an infant that couldn’t sleep. She managed a stressed mom and eventually the panic attacks waned. They wore ridiculous Christmas outfits and looked for Easter baskets just like the other kids. Though I’ve never hid anything, I also didn’t sit her down and tell her much as I knew she’d ask when she was confused or needed a point in the right direction.

When Coco noticed Addison didn’t walk like the other kids his age, and even a few younger ones passed him up, she queried. I told her Addison had a problem with his muscles that all related back to that time in the hospital. It seemed to quench her thirst, and we went on into the land of divorce and a new home.

After that stressed passed, one day she asked:

What is Down Syndrome or syndrome de down?

I related the story back to that muscle problem and said other children had it too. She continued eating and then proceeded to read her brother a box of Clifford books.

Focusing so much on the child that needs all that extra attention, therapy, effort, (and then there’s that exercise machine in the middle of the living room) can drain a seven year old. I forget to give her credit where credit is due as she’s got Down Syndrome in her life also. As Addison’s sibling, she might also have extra responsibilities as an adult when she’d rather be running off to London or Paris.

Coco and Addison are integrated into the good ol’ world as best as we can manage the ups and downs and dramas. In fact, these two little monkey hang with the best of them. I feel so normal, sometimes I want just want to howl.

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.

The big purple ball I used to exercise Addison deflated. I dunked it in the pool in search of holes but couldn’t get it to stay under water. I brought it to the tire expert guy down the street. He got it inflated, but the air only lasted a week. I received a new nozzle, which also failed. I originally brought the over-sized thing down from the States when I was pregnant in hopes of birthing on it or at least stretching my back. I did neither of those things since non-stop contractions made my pregnancy a “sit down only” affair and the thought of going anywhere near a ball as I suffered through labor would have made me hurt anyone in shouting or kicking distance.

When I bought the purple ball in a Pilotes kit at 4 months pregnant, little did I know it would become such an important exercise tool for my son who would have Down Syndrome. The nannies and I gave it our best effort to use the squishy thing, but Addison kind of sunk into it. Plus he protested a lot.

I passed an exercise store in a strip mall called Plaza itzcatzu and saw huge, inflated balls inside. The kind man in the store was fluent in English. Addison tried out the tread mill and flirted with the entire sale staff by blowing them kisses while I decided on my purchase. As I continued to talk, I told this man how sometimes I get judged because my son doesn’t walk alone yet. Most of the time I pay “no-never-mind” but there are moments I have a harder time shaking it off.

My nephew didn’t walk until he was three and one-half. There was nothing wrong with him, he told me.

It was just something nice to hear. A bonus that came with the big red ball. The ball barely fit in my two-door car. Once in the living room it looked right at home beneath the shadow of our mother earth lamp looming in the distance. One can never have enough orbs floating around.

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.

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.

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.