Wil was sitting on the ground, unwilling.

“What does he have?” She asked.

“What do you mean?” I responded but I already knew.

“What does he have? What is wrong?” She prodded.

“He heard a loud noise so he’s scared. He just needs some time. He’ll be fine.” I knew that was not what she was after.

“Oh.” Slight pause. “Well what does he have?” She asked again.

“Do you mean does he have Down syndrome?”

It seems most anyone I meet knows someone with Down syndrome. Almost instantly they launch into a story about their daughter, son, niece, nephew, aunt, uncle or friend and how they have enriched their lives. Then we invariably laugh about the seemingly innate stubbornness our friends with Down syndrome share and find ourselves carrying on with big smiles on our faces with all kinds of stories. Nine times out of ten strangers become friends with our Down syndrome bond. But this was already shaping up to be a very different kind of conversation. My inner red flag was waving it’s head off.

“Oh, do you know there are supplements for that?” Ahhh, that’s what this is about.

I’ve been approached with supplements before, that will “cure” Wil’s Down syndrome. In fact, some of his facial features with Down syndrome will even start to “normalize” after taking such supplements, is the claim. That one really gets my blood boiling. My son is beautiful, there is nothing “abnormal” that needs to be “normalized”, and there is nothing that needs to be cured, either, thank you very little.

“Do you mean to cure him?” How dare she. She doesn’t even know my son, not to mention the fact that my son was sitting scared on the ground and I was trying to calm him and coax him up. But her agenda was not about helping him, it was about curing him. She launched into how to cure my child of his “disease.” If she really wanted to help, she could have lent a hand for goodness sakes.

“There is nothing to cure.” I said. “Down syndrome is a genetic difference. He has three copies of his 21st chromosome. He’s very healthy.”

“Oh, but you should watch this video. World renowned doctors. They cure people who are in wheelchairs that can not even lift their heads. After they take the supplements they are able to move their heads.”

“Wil moves his head just fine. Really.” Did she even hear anything I said?

“But these are expert doctors. You must watch the videos.”

Wil has a genetic condition, not a disease. Let’s get that difference very clear. If I had a piece of chalk and a black board in front of me at the time I would have had her write 1000 times “Down syndrome is not a disease.” And if she didn’t get it after that, write it 1000 more times.

I am not on the same path as this woman, I don’t know her history or where she was coming from. I know I have made many blunders myself in the things I say and do simply because I do not know better at the time. But there is a difference between ignorance and not knowing. Ignorance does not want to know. Not knowing is simply a lack of exposure.  She clearly was meeting the former definition. The sad part is, our society has become so politically correct, there are people that truly care and make blunders simply because they don’t have exposure to kids with special needs. When Wil was a baby, friends confessed to me that they really wanted to ask questions but were too scared to because they might say the “wrong” thing.  Whenever I meet people, I remind myself that I was once new at this whole special needs thing. There was so much vocabulary I did not know and I’m sure I said lots of things that grated the nerves without even realizing it. A few years ago, a new friend of mine let the word “retard” (pains me even to type it) slip and immediately caught herself. She apologized over and again. When she said it, I clearly saw on her face how bad it tasted once it left her lips. A word she likely once through around without a second thought before she met me. I never once had a discussion about that word with her previous to this. But when she it came out, I could see she now understood the pain that word brings. I wasn’t mad, I was glad she said it in front of me. I was glad that she now knew for herself, now with exposure to a child with special needs, how wrong that word really is. She didn’t know before, and now she did. There will always be situations where we just don’t know until we have a personal experience and can learn for ourselves.

I’m not sure the conversation with the woman I had today got through. When I left her, I felt like I was in my space and she was in hers. Our two worlds never connected. She clearly knew very little if anything about Down syndrome and was not interested in learning more, even though she was trying to “help” me by curing my son.  When I have these types of encounters it’s almost like a shock. How in this day and age can Down syndrome actually be considered a disease? It just blows my mind. Let’s take yourself for a second. You are generally healthy but you may want to improve some things about yourself; eat healthier, learn a new language, increase you muscle tone, take guitar lessons, help to relieve world hunger. You don’t need a cure to improve yourself. You just need motivation and people to help you along the way.  Now, if you developed Lyme disease, then you’d be looking for cures. Life improvements and disease are two very different things. Wil does have extra challenges because of his genetic differences, such as cognitive delays and low muscle tone, but they are not diseases. We work on ways to improve his muscle tone like horseback riding, staying active, eating healthy. We work on his cognitive delays with added reading, dot math, and spelling. There are health ailments that are associated with Down syndrome such as a higher incident of heart issues, leukemia and Alzheimers. Of course, we need to focus strongly on cures for those health ailments. But let’s be very clear these are health ailments associated with Down syndrome. They are NOT Down syndrome.

While there will always be people like those I encountered today, that are like talking to a brick wall, there will always be people that truly care. It’s an incredibly special part of life when I go somewhere with my Buddy Walk shirt on and a complete stranger will approach me and share a story about a loved one with Down syndrome. And there will always be people that simply say the “wrong” words because they just didn’t have exposure to this experience but are open and wanting to learn more. I was angry with this woman I encountered today and she did say so many “wrong” things. But I won’t let that stop me from giving people a chance to say the “wrong” things that truly care. The best education is not a lecture (though I would surely have delighted in seeing this woman write Down syndrome is not a disease 1000 times) but to realize, with time and exposure with Wil, and other friends and family with Ds, that this is in no way shape or form a disease. Down syndrome is a genetic difference. Our friends with Down syndrome add much value to our lives being exactly who they are, just as you and I add to life by being exactly who we are. If you don’t believe me, go ask someone in a Buddy Walk shirt. They will be more than happy to share their stories and I promise you two won’t be strangers for long. Why the heck would you want to “normalize” or “cure” something as uniquely beautiful and special as that?

When I was in high school I did not like science. I had zero interest. The flip side of that was I wanted good grades. So I had to care enough to get a good grade and move on. My dad, trained as a chemical engineer, loves science. Specifically, the periodic table of elements. He’s a smart man all around, and I was lucky to have him help me with my homework. He would read the chapter of my book we were working on to refresh his memory, then the light bulb would go on, “Oh this!! This is so great! See, Christie, this is how it works…” And he would expertly and enthusiastically explain how it all worked with much more detail than I was interested in. I’d get the entire background as to how it all came together. In his mind, nothing was better! Though I knew how fortunate I was to have my amazing dad, I was like, all I wanted to know was how to answer number 4!

Even so, I thoroughly admired his enthusiasm and excitement and that part was contagious. Though I never shared his full enthusiasm for the periodic table, it inspired me enough to get a surface level understanding of the subject that I would have likely never conjured on my own. However, the deep underlying workings of this science never stuck. It was like there was this wall inside of me, and I really needed a deep care about science to break it down. Whatever it did to light a fire in my dad, was not compatible for me.

Many years later, I’m still that way with science. I get excited about the things I need to know, such as my interest in science in terms of running a marathon because I care enough not to hit the proverbial wall. I’ve hit them before and they are not fun. That is motivation in itself. I do love to know how the body works, and that has helped me a lot as a coach. However, what is most important to me, that fills me with the excitement and enthusiasm my dad shared, is the power of the mind.

I’m thinking of getting Wil into CrossFit. It would be a beneficial workout for his low muscle tone. I was talking to a local CrossFit gym owner who is a very dedicated and knowledgeable man. I really enjoyed talking to him as we clearly both share a passion for fitness. He was telling me how runners are the hardest population to train in CrossFit. Runners love to run. CrossFit breaks things down and that is very challenging mentally for runner. He said he used to be a runner, and though running is satisfying, you really need more.

Scientifically, you do. I do not disagree. We runners need cross-training to stay muscularly balanced to avoid injury. But what I love most about running is what rises above science. It’s how you feel. And you need that big, open space in front of you to do it. Surely, you can try to break down the feeling runners get to endorphins, and all of that. But only partially. I would challenge any scientist to take even one person, measure what they have going on in life, how they individually process those personal events, then after going for a run, how the trajectory of their thoughts change after said run and how exactly they now will behave different because of said run. While some predications may be made, an experience like that could never be accurately measured even with large margin of error. I love that piece of mystery in our lives that is all controlled by our minds.

When I talk about this piece of running to non-runners, I see the same look in their eyes I must have given my dad. They see my enthusiasm, they even absorb it, but inside there is this wall inside that just doesn’t really care enough to break it down. They hear what I’m saying, but it’s just not getting through. That’s ok, just like myself and my dad, we have some interests that just don’t mesh. What’s important is, having something powerful enough in our lives that rises above science. To share our enthusiasms about things so we can at least have an understanding between one another.

Right now, on few recent occasions, I have felt this wall between me and explaining some of Wil’s limitations. We all have our limitations, though some of his limitations are different from what the general public experiences. He has a high sensitivity to noise. Any loud place, like the movie theater, a stadium, an auditorium, a sporting event and anywhere animals are, he needs to have his ear protectors on. It’s very unsettling to him. This sensitivity requires forethought to where we are going and what we might encounter. There are extra steps required, extra patience, extra explaining that must be done to people who do not understand because this is not their norm. Like my dad did for me, I share my knowledge that I didn’t have before, my exuberance, and explain why this is hard for him. But there are times I see that same look in their eyes…the wall is there. Like my dad did with me and science, I’m not looking for a full convert, just a surface understanding. Which I don’t feel is too much to ask. So, when I encounter this wall it is incredibly frustrating to see a blankness and unwillingness to understand and have compassion for his current limits. Because deep inside all of us we have these walls, and they are never broken down unless we make ourselves care enough to make a change.

I can’t make other people change and see things the way I do just like my dad couldn’t make me love the periodic table and the CrossFitter will never convert me from running. Likewise my enthusiasm about running may not to turn the non-runner into a runner. I do firmly believe, however, that we learn from and absorb one another’s shared enthusiasms and passions. That above the specific quantifiable mechanics of the periodic table, above the long, beautiful streets to run, above the heavy barbells, and the loud noises my son is sensitive to, there is something we can all share. Our enthusiasm and passion for what we love is contagious and can be powerful enough to open us up to a certain level of understanding if we allow it to. Though this may not be enough to break a wall inside, it does allow us to meet in a place where we can work together. To get through to make the grade, to be compassionate, to try to understand where the other person is coming from.

Even though I still don’t give much thought to the periodic table, when I look back I still smile from the memory of my dad’s enthusiasm surrounding it. Though my memory of how all those elements fit together has long disappeared, the feeling of that time still remains. I didn’t have to understand it like he did to benefit from what he taught me. He taught me to love something, and love it a lot. And share that love even if the person receiving it doesn’t fully understand at the time. It’s not really about the elements, but a love that we hold inside that can be shared. That is something that can never be measured, quantified or encapsulated.

Magic lives in our minds and how we think about events and how we open or close our minds to them. How we change our thoughts and break down our own walls or simply by taking on a new surface level understanding. Magic grows and expands on how we feed and share our passions and enthusiasms. Passions and enthusiasms have the ability to continuously expand, change, and evolve depending on how they are felt, shared and willingly received in an unquantifiable way. Oh how I love the unpredictable, unmeasurable magic of that.

Back when Wil was younger, I’d look at kids that would take off running across the playground. Wil would take off running with them as fast as he could, but he would instantly fall far behind. That’s a tough thing for a mom to see knowing that not only will he not catch up, but likely fall further behind. I’d see the kids laughing and talking back and forth, and Wil would be laughing, too, because they were, but clearly he had no idea what they were saying. I would wonder, what is it going to be like as he gets older? How will he communicate? Will people stop to listen? Everyone has something to say, no matter how long it takes us to say it. How will he find common ground in a world that moves so fast?

And, then, as if in answer, there were always those friends that would stop and turn around to see where Wil was. They would run back toward him, grab his hands and say, “Come on, Wil!” And I would watch with tears in my eyes, immensely thankful for the different gifts Wil and his friends give to each other.

Every school year we start anew. My eyes are keen for the kids that stop in their fast play. The kids that slow down and talk to Wil. The kids that look him right in the eye and ask him a question and wait for as long as it takes for him to answer. Kids that sit with him at the lunch table while the others have gone off to the playground. And when Wil is on the playground, the kids that stop their fast-moving game and include Wil at a level that he can play. The kids that Wil gives a high-five when we meet in town. The kids that Wil runs up to and hugs. The kids that immediately see Wil and come running over. Without fail, all of these interactions are met with a hug, a smile, and many times laughing and silliness ensues. Ask any one of them, and they’d all say it’s worth the wait.

Potty-training for Wil took 2.5 loooong years. Wil was in the middle of Kindergarten when he finally decided that the potty was a good choice. But, with Wil, you can’t force time. You can help him along, give him the tools, but he is the one who ultimately decides when he will use those tools and how he will use them. Back when I began the process of potty-training with Wil, and mind you I went to a seminar our Ds support group put on about potty-training kids with disabilities, bought the book, read and followed the book, and had many talks during this process with fellow moms in our Ds support group (we laughed how we never had so much potty talk in our lives before having kids with Ds!), he remained happy to take care of business just about anywhere, anytime. During all of this, my parents were going to watch Wil for the weekend while Matt and I went up north with the twins. My mom was joking with a friend about my adventures in potty-training. This friend told my parents that I was likely too busy to potty-train Wil with his twin sisters being so close in age to him and that was what was taking so long (grrrr!). My mom shared this with me and said that she would try to potty-train Wil over the weekend for me. After I stopped silently chuckling to myself, I thought, you know, what the heck! Give it a go (pun intended). While I didn’t like this friend’s assumptions, I wouldn’t put it past my mom to work miracles. Like when I told my mom the kids will definitely not eat broccoli, by the end of the day my mom had Elizabeth at least tolerating broccoli while Katherine and Wil were now proclaiming broccoli their favorite food. So I said, “Great! Have at it!”

A few hours into the start of their potty-training weekend my mom phoned me, laughing and proclaimed, “I call Uncle!”

Some things take time. They just do. Not everyone is going to understand that process, and sometimes we may not even understand the process ourselves. We all have our own paths to walk at our own paces. But, at least by stopping every once in awhile, we can get to know each other a little better. Taking a moment to find common ground, create a little understanding, share a smile, toss up a high-five, form a bond, and maybe even a lasting friendship. In the end, when we look back, we’ll see those are the parts of life that were always worth the wait.

There are so many stressed faces out there. People cutting each other off to get there first because their agenda is more important. Grumbling waiting in line at the store. Arguing over who had less sleep. What a silly thing to want to win the battle on! That said, I have no idea what these people are going through. Some struggles are all too real. But in some respects, especially in very stressful times, I wish we could all find it in our hearts to lighten up a little. To focus on a slice of gratitude, no matter how small. I do my part to flash a smile just because. And I’m always very thankful for the people that lighten my day when I need it. A simple smile in passing, a friendly conversation in the grocery line, a stranger holding the door open; little reminders to me how many things there are to be grateful for. But, somehow, someway, when Wil is with me on these public outings, he brings gratitude to a higher level just with his presence. He notices small things, and I think that’s his secret. He lives life in a constant state of awe. The things we barely see anymore because we see them every day are always made anew with him. His joy is raw, his feelings authentic. His emotions are so refreshingly open and real, and that is what makes him so darn infectious. (When Wil eats ice cream or a chocolate donut, he says, “mmmmm” with every bite. He always says, “please,” “thank you,” “you are welcome,” and he means it.)

When I go to the coffee shop or to the grocery store, basically anywhere with Wil, he’s like a joy spreader and he doesn’t even need to smile (though he usually does). It’s something about the way he holds himself, or maybe even the energy surrounding him. Whatever it is, it’s like a magic happy-making force. Immediately upon seeing him, strangers completely lighten up. Frowns turn around and I feel the surrounding energy open and brighten. There really is something magical about our friends with Down syndrome.
Sure, Wil needs extra care but I would never, ever qualify this as a burden. Though I’m raising him to be independent, there is a part of me that secretly hopes he can live with me forever. He is a happy-happy-joy-joy spreader. If you tell Wil life is not butterflies and rainbows, he will go out tirelessly looking for them to prove you wrong. He focuses on what can be over what can’t. Not because someone told him to, it’s just what he prefers to do. Sure, we have our stubborn I-don’t-want-to-so-I’m-going-to-sit-right-here-forever-and-not-budge times. I’m not saying he is perfect. I’m just saying life is really, really good with him around.
It’s quite ironic how Down syndrome is seen as a burden when I see how easily Wil’s presence lifts burdens on a day-to-day basis.
Life is not easy in this politically-charged, fast-paced, high-wired social media driven climate. We tend to quickly and easily shut down another’s belief system different than our own and be in such a hurry we never notice things around us. Wil is an example of how beautiful being just who you are with what you have right now is. There is no right or wrong here, there is only the universal sight of kindness and joy. Loving what you love, seeing the old in a new light, sharing a smile just because, and when there are no rainbows or butterflies in sight, making a way to find them. P.S. If you were wondering Wil’s political stance, he remains firm in his choice of Doc McStuffins for president.

When you forget your smile, lose your patience, or can’t seem to find a slice of gratitude, remember Wil’s to regain yours. And then the next best thing to do is to share your smile with someone else. Just because.

Wil loves music. Last night as we were cleaning up a big dinner with family, Wil brought his CD player into the kitchen, propped it up on the island and asked me to help him plug it in. After I plugged it in, I went on to clean dishes. He put in his Music Together CD, and forwarded it to the song he wanted to hear, “Play the Drum.”

“Mom, play the drums!” He was standing up patting his hands on the kitchen stool seat. I walked over and played the kitchen stool drum with him.

After the song was over, I went back to the dishes while Wil shuffled through the other songs on the CD. He stopped on “Wiggle.”