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.

Most parents know the ups and downs of babies. I mean the picking up, the putting down, the picking up and the putting down especially when the tyke turns to walking. In our case since my son spends all his time scooting on the floor, the ups and downs last longer. There’s an advantage to all this. I get to see the world from another view point because I spend a lot looking up.

I see the specks un-swept; the scratches on the bottom of the coffee table; the dust balls under the sofa; and the sunlight as it beams in from the window in the ceiling. If I wasn’t down here, I’d have missed it all.

There’s always something new to buy: balls, gadgets, exercise equipment, feet simulators, music therapy, miracle walkers, swings - all promising the results I hope for. So many well intended people approach me with the name of another therapist I should see or more equipment I should purchase because they know it helped their child or a friend of a friend’s child walk, run, or crawl.

I nod and accept the kind intentions. Then, I have to decide which is what and when I can afford something and how and why I can and should do it. Overall, I don’t like introducing a lot of therapist or machines. The time just shuffling around in the car I feel is wasted energy. After mounds of suggestions, I did finally decide on introducing a few “budget” items.

One is a jumpy-swing thing. No other word for it. Because I could have the mini-swing apparatus made for cheap by a guy down the road, and because I could have the elastic rubber bands made by a lady for $40, it turned out to be a pain in the butt to design and transport, but a bargain when all was said and done. Once a day, Addison hangs from this thing, and he works on gettting his brain to communicate with his legs without anyone helping him. He can move on his own. He’s not always pleased with the swing; he protests a lot. But, we’re gaining ground.

Then….I returned to the therapist triumphant and content that I had conquered the jumpy-swingy thing design, construction, and implementation. We put Addison in the swing at the therapist’s office so I could be sure we were doing the correct exercises at home. The therapist, a wonderful man named Moises, then placed an electric treadmill under Addison’s feet and wow! Look at him walk! The boy was on fire. I had read a few months earlier that Down Syndrome babies can walk sooner with treadmills. I considered looking for one, but quickly let that idea go when i saw the price tag.

I think you could find a treadmill for about $500 (that’s Costa Rica prices), he said. $500! I just found a bean bag chair for free, which had been suggested by the therapist a few weeks earlier. One thing I like about my therapist is his down-to-earth approach about all this equipment: we were doing fine with a beach ball for $1.50 and now I’m almost up to $1000!

I have an old treadmill that is not electric. It’s rusting as it ages through each rainy season. So, we’re going to haul the rower/treadmill/stomach twister/reclining bicycle over to my house and give it a whirl.

Then…I went to my daughter’s gymnastic shows and Addison was walking, almost completely on his own, down this row of parallel barred gates. My friend said, "I know a guy who can make you a gate just like that! It’ll only cost $100 or so….

And so it goes………

In the past three years, there were many times I thought I was going to die. Not metaphorically, literally. I felt it would just be a matter of time until I was just skin and bones. Ashes to ashes dust to dust. Medical problems happen to every kid. Allergies, asthma, leaky adenoids, heart problems, and ear infections plague mounds of children, but with Down Syndrome medical problems are almost a certainty. This is part of the sorrow I faced when my son was born. I knew the pain had just begun. After a pregnancy riddled with agony, I received the news that my son had Down Syndrome when I was in again in pain; drugged from anesthesia; and it would be years before it ended. Not metaphorically, literally.

I remember a night so difficult, a night my son couldn’t breath, again. It had been a particularly bad stretch: months without more than two hours of sleep at a time. I couldn’t move my right arm because a muscle had snapped from all the hours of holding Addison and patting his back to help him breath; I ran to the toilet to vomit, but nothing came up. I choked and coughed and hobbled back to the bed; my son began to cry and I screamed out to the ceiling: Is this when I am supposed to die? I’m not afraid! It’s life that’s got me terrified. Take me. Death must be better than this.

I didn’t die that night. (Suppose you figured that one out.) And, there’s no wonderful ending to this story; an angel didn’t appear; no bells chimed. It took two years to end the misery of my sleep deprivation. It was difficult for anyone to understand. People would look at me and wrinkle their eyebrows and try as best they could to sympathize. But it was if I had AIDS: They knew it wasn’t catchy, but just in case it was better to keep "a distance." Someone told me depriving people of sleep was even against the Geneva convention. Torture.

Facing death is life from the inside out. But that’s the funny thing…we’re all facing death…at any moment we could slip on that bar of soap or get hit by a semi-truck or drown in the neighbor’s pool. But we’re a stubborn bunch, us humans. When people tell me that Down Syndrome children are dropped into our lives as angels - gifts of light - I wanted to kick them in the teeth. Not metaphorically, literally. I didn’ t ask for this! This isn’t fair!

But I did ask for it. I asked for a life of love; I asked for a life of music and joy; I asked for courage; serenity; and humor. And during the nights with this little boy, I found it.

Not metaphorically. Literally.

My son talks so much; interacts so much;understands so much; I am confident of his brilliance. I wonder, like every other mom - what he will be - what he will do in life. He’s already bilingual, plus he can use sign language (in Spanish and English). There are days I go about my merry way with my regular-old-little boy.

Then, there’s this walking thing. He’s 2 years and 2m months, and he can’t walk. He can scoot on his butt and when driven enough, he crawls on his elbows, pulling his body along. The most well-intended people offer suggestions, therapy (always more therapy), and I begin to doubt what I am doing. Am I doing all I can? Could I do more?

I am constantly torn. I live a duality of normal and this thing…this…thing we’ve all got…Down Syndrome. But then there’s this little boy that has me and my daughter whipped, whipped in love with him and I catch myself feeling, gosh, feeling so normal. So, which world do I live in? After the round-about-year I’ve had with a few "normal" people out there, I am beginning to think that the world of the abnormal is much closer to fine; a much saner place to be.

My daughter, son and I sat down for a meal. We had the fancy plates out and I lit some skinny little candles. Sometimes my daughter, Coco, is afraid of fire. For awhile, she´d refuse to be around when a candle was lit. Then, she´d manage to bear the flame, but would insist after 10 seconds:

O.k. That´s enough. Now you can put it out.

Well dinner went on splendidly. My son Addison (he´s the one with Down Syndrome) ate a few spoonfuls of green stuff. And, Coco nibbled as she´s prone to do.

Before we were completely finished. She stood up and walked over to the candles. Thirty minutes had passed.

I want to blow out the candles.

Make a wish I said.

She held her hair back and blew.

As she walked back around the table she said

I wished for Addison to walk.

My nephew is a curly headed beauty. We share a life only through photos since he lives in Europe. I’ve yet to meet him or even his sister. Travel has been put on hold due to issues with my son’s health.

This is not a bad thing, staying home has grounded me and given me a chance to spread my wings at projects under my roof. In fact, there’s a fantastic podcast, SunStruck Radio, an hour magazine show coming soon about the wonders of life and the interesting happens around Costa Rica and the world, which sprouted due to my “at-home-ness.”

I digress….

This cutie nephew of mine was born six months after Addison. The latest photo shows him standing tall with his sister at his side. The photos are adorable.

There’s this twinge that pokes at the back of my skull when ever Addison is surpassed in gross motor skills by his peers, and then his younger peers. My son is such a great gift in my life, and what a lesson he gives me everyday.

Who’s to say mom who’s normal? What’s normal mom? Let it go mom. We’re not so much different, you and I.

We all think we’re different, but most of us are lucky (or possibly unlucky) because we get to hide our differences inside. Insecurities…addictions…fear of commitment…hidden candy bars in the underwear drawer….

Now, Addison, his difference is right out there. When we walk into a room, I get those stares:

Is there something wrong with him? Is that kid a little off? I can tell people are trying to figure out what to say, how to act.

And, after that scratchy feeling dissipates from my skull, its all o.k. I saunter with my kid with pride because he’s taught me how to bring out those differences, show them, flaunt them, and then, after the dust settles tuck away in the underwear drawer because I don’t need them anymore.

Funny thing….I watch other babies, ones I know who’ve grown up for the last year alongside my son. These babies walk. And before that they crawled. My lovely little cherub boy, who’s skin is like milk and face like a pumpkin, cannot not crawl; it will be many more months before he walks.

I don’t dwell on this. We go merrily through the day, plucking away at little achievements. I relish his little "baby-ness." Most days I plow right through any sadness about my son’s floppy muscles.

I vacillate between wanting to keep my child in the realm of a regular old life, but I have to keep this thing, this Syndrome, sitting there in the passenger seat. It doesn’t drive our life, but it rides along everywhere we go.

In the hospital, as I watched Addison fight for his life in an incubator, the doctor told me that a child with Down Sydrome was a gift. I wanted to hit her. I thought she was placating me so that I didn’t feel so bad because not only did my son have Down Syndrome, but he’d also just been diagnosed with a very serious bacterial infection and would have to stay in the hospital another week. All the books on Down Syndrome seemed to pound in the fact there would be so many things my son wouldn’t be able to do. Or, will do themso much later than other children. Instead of a baby, I felt like I had given birth to a demographic group. I quit reading them all.

Last night, Addison and I read a book about animals. He pointed to all the creatures with his cute little chubby finger and said “OOhh, ba ba ba – ta ta ta.” Then, I squeezed him into all sorts of yoga positions, and then we moved right into exercises to help him crawl. We topped off the night with a round of peek-a-boo. He held the cloth in front of his face, paused a moment, and then pulled it away. We laughed and did this until he fell backwards on a pillow from exhaustion.

Funny thing….Having a child with Down Syndrome is different, but having a girl is different from a boy and twins different from triplets and a child with diabetes is different from a child without sight. I glance at the books now, but I keep them at a safe distance. I read them when I need guidance and occasionally order a new one I see that interests me. I believe each child comes with a life changing lesson for us adults, if we’re willing to listen. My daughter has taught me to let go. Addison teaches me patience. He’s really the one in the driver’s seat. But, then again, what baby isn’t?