Quick as a flash I can be struck by lightening. In an instant I can swept away by the beauty of my son, just like any other parent does with their child. In any moment I can roar at laughter at the silly things he does, just like any other parent does.

Down Syndrome exists like a subset in my existence. Addison is still expected to put his dishes in the sink and not scratch his sister’s eyeballs out. His sister is expected to return the favor. I have two kids that fight, agree, love, wrestle, giggle, and love to dress up in play capes and silly hats.

When I last looked, I have two kids, just like any other parent does.

There are moments I remember that most likely, my son will be with me forever. Independence is a big goal, and with all his work, I am confident he will get there. But he will have more dependency on his family than other grown children.

A lot of parents have told me that when they’ve gotten the news, the fear that they’d be “tied-down” for the rest of their lives crept into their consciousness. I was one of those parents too. No one I spoke to was extremely proud of this fact, but it is a very natural reaction. The regular, ordered life of: Baby, toddler, kindergarten, primary school, high school, college education, career, marriage, and children became all jumbled up, tossed out the window, and given a whole new look.

I am often asked if my son is two years old. He’s four, going on five. This used to sting. It made me feel like I wasn’t doing enough. It’s a constant reminder from the outer world that he falls behind the regular stack of measurements. The good news is that it doesn’t sting anymore.

I’ve discovered this wonderful secret: Spending the rest of my life near this fabulous angel is a gift so rare and wonderful, I am blessed to be “saddled” with his care for the rest of my life. It was not an easy journey to shift those old, burdened down thoughts into ones of possibilities and opportunities.

Now on Saturday nights, I go out to eat at 4:30 p.m with my very handsome date. He eats his special foods; charms every waiter and waitress he sees; makes a mess; throws his spoon; screams too loud; and insists on throwing his own napkin away behind the bar (which happens to be very far away from our table). We’re usually in bed by 8 p.m. Wild, I know.

I have no fears of the future as I know Addison will be a strong, independent, confident, talented, funny young man. I’m just glad I can be there in whatever capacity he needs me.

Parenting a special needs child demands a lot of extras. For a moment, I’d like to tip my hat to those other single parents that make it work when they do not have help. All of us with special needs need a support system, even sometimes if it’s just checking out Facebook to see another happy face.

In Costa Rica, though it does add up to the biggest part of my budget, I’ve chosen to have as much help as I can in the home. Even if I wasn’t single, this would a big help in the home. The demands of the “extras” become at times only about the physical aspect, it is easy to get lost in the day to day workings of the body. The spirit can take a back seat and disappear.

However, a nanny doesn’t cover it all. Though there is a public school system, unless a special needs child is not severely effected, it could be a challenging choice. That means private education, which of course costs. Sometimes an assistant is needed, which costs of course. Throw that on top of the nanny costs, and it adds up.

I guess there really is no perfect solution. What one country, state, or area lacks, another provides. We’ve got to choose where to be. At this point in my life there are many times I’d like to be dining out or listening to jazz or going to movies, but that’s not the card game right now. I’ve got a stunning young man in my life and with great blessing, I am able to get some help.

I look up to those who manage where more help is far out of reach. On those days when there is no nanny scheduled to come, I think of all of you and send you as much as I can in appreciation for what you do.

Welcome to the world of non-stop movement. Exercise becomes a big part of our lives.  In order to get my son’s muscles working at full-steam, he must exercise a good part of the day. That means, I get to do it right along with him.

And it’s no normal day of exercise. Addison’s “weakness” is his legs. He just was not a fast one to walk. Though most Downs kids are slower to walk, I know of some kids that walk before other “normal” children. In order to get Addison’s body to walk like it should, we’ve invented machines and games and gadgets to keep his interest peaked. In theory, we all want to exercise. I mean look at all the promises we make come New Years Day, or the day we can’t fit into our “skinny” jeans anymore.

We keep adding new twists to old exercises. The latest and greatest in our house is a metal bar on a stanton we had made for Addison to do jumping therapy every day. He loves to swing, twist, do leg ups, and we can almost see his stomach ripple before our eyes. A strong stomach makes for strong walking.

With most of us, that promise wears off. Slowly, the days to the gym get fewer and the second piece of cake creeps into our mouth without even thinking.

There just isn’t the luxury to let the therapies go with my son. It’s an every day thing; a must. And it does work. He grows stronger; gets bossier as he gains control of his gait and commands us all to go here and there as we try to get those exercises in; and he is getting sick less.

The hidden benefit in all this? I’ve been in better shape than perhaps most of my life. Where once I thought Down Syndrome might age me prematurely - due to all that worry - it now has turned out to be this unconventional fountain of youth.

He disarms us. Addison has this talent of taking the biggest, strongest, surest people and making them a little more humble and even unsure of themselves. As I watch it happen over and over again, it is a fabulous trait to have.

We were checking out in the grocery store one day and Addison wandered about while I tried to pay and walked over to the bag boy who was finished bagging and a bit bored. Addison stood next to him and sort of mimicked his stance. The young worker looked down and smiled, something we all do when we first have to acknowledge kids. That usually gets the kid satisfied enough to run off to the next task. Not Addison. He just stood there some more and continued to smile, looking right into the bag boys eyes. This is when I notice people start to get uncomfortable.

Have you ever tried to look into someone’s eyes for along time. It’s no wonder people get fidgety. They say it’s the window to our souls and many of us are not sure how what to do with all that “soulfulness.” It took me years just to be able to look the cashier in the eyes and say a heartfelt “thank you.” I’m no stranger to the feeling.

Addison may never develop that part of his ego that worries what others think. Over the years, I finely tuned the concern and dreaded that someone would think poorly of me; of how I dressed; of what I wrote; of how much I ate or didn’t eat. Tires me just thinking about it. Now, after all these years, I’m trying hard to get to the place he’s at. I can see how it develops as I watch my daughter tangle in the world of school and parents and life. It’s something we all have to come to terms with and then learn again, how to shed.

My favorite is when Addison approaches men in suits. They are a savy bunch until they are unarmed by this four year old. I think they even start to sweat. It’s a delightful trait this child gives us all. Once we all forget what others think - yet also figure out how to love with as much gusto as my son does - wow, what a world it will be.

Breaks come few and far between. Kids with Down Syndrome have a body that needs to work a bit harder at keeping up, and a cognitive development that usually takes a whole lot of extra patience. All kids try our patience - I think that’s their job - but with trisomy 21, the extra mile always seems to turn into to the four extra miles.

A friend of mine said she wanted to change her son’s favorite snack to something else because it’s all he wanted to eat. All day. When she travels, the minute he arrives anywhere, he’s searching her bag for that bag of popcorn. Now that sounds simple. I know. Just change it to something else. Yet it loops back to that patience thing. Most likely there will be tears, and odds are there might be a tantrum, and yes, that’s do-able, perhaps the first or fifth time. But it takes a hundred times. It took perhaps six months to get Addison to stop whipping his bottle of coconut water when he was finished. I lost the empty bottles to the streets, a few somewhere in malls around the world, and more than a few hit the back of my head. And we I just don’t get to say “pick it up please,” at least at first. It’s pick it up, please; wait for tantrum; watch it get whipped again; repeat stage many, many times. It has improved greatly. He rarely tosses it anymore and now actually hands it to me. In fact, the funny thing is, it came around so full circle, he gets a little miffed at me if I don’t take it from him on demand or he can responsibly (on his own), take it to the sink himself.

Addison needs to keep walking all the time. Something he really only likes to do if he is fully stimulated. That means at school, he’s on fire and walking everywhere (though the first year wasn’t like that - refer to the bottle whipping to see the plan of attack there…). At home, he’d rather sit. So unless we can find another child in the neighborhood to play with, we have to invent something to get him moving. His lungs need it.

Today, I bought bubbles. He had a tantrum. Not sure why. I waited. He had some apples for a snack while crying the whole time. After a good cry, he finally decided the bubble-blowing was too much fun to pass up. We then ended up spending an hour splashing, blowing, and even got the car out for a good wash.

It will get done, but it takes a long time to get there, and there’s just not a lot of breaks in between it all. The car is kind-clean when we’re done; the bubbles were the same size as all the other kids; and the tears rolled down his cheeks like everyone’s do. But the lessons were doubled in points - for whoever out there is counting.

You get your own guru/warrior/teacher/sage. The minute I found out Down Syndrome would become a permanent part of my life, I started a journey that I didn’t plan on taking. But it took me. And it took me good.

I’d always imagined that I’d sign up for a spiritual class and go up on a mountain or hike in the wilderness and this great inspiration would flood my being and I’d return to LIFE, knowing exactly what to do.

I paddled in the backwaters of some of the most pristine and beautiful wilderness areas in the world. I’ve stared at some of the most astonishing works of arts - for hours - with jaw dropped to the ground. I’ve moved gracefully (well, sort of) through the air playing Tai Chi, and I’ve stretched into ridiculously strange yoga positions, all in the name of “finding myself.”

And I did find a few pieces of myself. Bits and crumbs, but then when I’d returned to civilization from the fresh forest and sweaty exercise class, there was LIFE again. All bundled up like a sock hiding in the corner of the dryer - hiding, confused, terrified IT wouldn’t be found.

Then, came my daughter. And along came my son. My daughter was a warm up for the lessons that came to me, like bullets from a bee bee gun from my son - rapidly, fast, sometimes stinging, but always a nick off of the top of what I thought was my true self. Turns out, my true self was hidden beneath an awful lot of layers of crud.

Remember those movies when a warrior goes to the great hero and gets lessons in sword fighting or karate? They never start out with the weapon, instead, they have to scrub floors, wash dishes, clean toilets, then maybe they’ll get to pick up a stick in the hopes of learning how to swing it. This goes on and on. The process of all that seemingly pointless work, perhaps, is that along the way bits and crumbs of the ego are left behind and wash down the sink with the dirty water.

With Down Syndrome I’m in my own private warrior school. My teacher throws me lessons everyday - to break a little more of the hard shell I used to live in the world (you know, that mask we all wear) - and I move forward a step, or I get sent back to the floors for a bit more scrubbing because I missed a spot.

And there’s just no time to dwell or revel in a victories or stare too long from photos from the past because my teacher knows too well how to keep a check on humility. After four years of training, I might (might) be up to picking up a stick. If my great guru thinks it’s time. I have no doubt he will let me know.

Without humor, I’d wouldn’t make it. Everything takes three times longer (or more) to complete, if at all; we have to learn a new language all our own; without warning, things whip across the room; and most likely at any time of the day, one can easily find some sort of food matter in my hair or hanging from one of my appendages.

I heard one mother say that if one more person told her she was lucky to have an autistic son, she’d blow her top. The day-in and day-out physical and emotional challenges are a lot. It’s not a pretty television commercial, this “special needs” thing. I mean, how many special needs kids do we see on peanut butter commercials happily spreading the stuff on a perfectly white piece of bread?

In a special needs world, most likely, the peanut butter would have ended up on my arm; the bread ripped up to pieces and thrown across the kitchen; and the spoon in some one’s hair. A sense of humor is not a nice extra to get through the tough times - like the dinner hour - it’s an absolute requirement when getting just one task finished can seem to plop me in a hole where, without a good laugh, I’d think this was all too unfair. Spending more than 1/2 a minute wondering why it seems so unfair is not in the special needs handbook. There just is no time, for the child will gaze up at us and again, ask for help, usually in a way we’d never even imagined, and send me roaring into laughter as I watch it all spin by.

I don’t know. At least once a day I need to say this. It is easy to be swept away by all the information out there. And when it includes a special needs kid, it can get more than confusing. Just picking out the right car seat is confusing or what to make for dinner, baffling. Understanding drugs and surgeries and how retinas or twisted intestines takes time to absorb.

Saying “I don’t know” gives me the space to step back and dodge the bullets of information coming at me. Saying “I don’t know” opens up the airways for that information to settle after the wind has died down.

And then, with some time and maybe a chat with a friend or a little nap or a cup of tea, the information won’t be so overwhelming and I can again take another step forward.

Move to a new level. Whether I like it or not, my son has pushed me to a new level of myself. Challenges arise I never expected to part of my palette. Orthopedic doctor recommendations were for someone else; breathing specialists for the person over there; swallowing my pride for another time - another place where it’s more comfortable.

Down Syndrome has moved me into a place where I am so uncomfortable, I wriggle with annoyance. I never expected this. I assumed all would be smooth, even in my difficulties. I assumed tackling this special needs thing would begin and end every day like it had in the past -a few more appointments were a simple inconvenience.

Yet I am awed and humbled and almost slapped silly at how challenging it is to manage all this. All this special stuff. But, in the end, it is nothing. Nothing compared in what my son has to deal with in learning how to put one foot in front of another or how challenging it is to climb a ladder we all find so easy to do.

I bow my head in his presence. He’s taught me how to climb higher than I ever imagined possible. His shoes I will never be able to fill. I guess I will be blessed to follow close behind.