I may not have an answer, but by God I have a corkscrew.
Posted on April 14, 2012
Life is just not easy.
Well, no sh*!, you think.
Right. But acknowledging it together somehow immediately begins to make it feel easier.
Having a child with a disability isn’t easy. Having children isn’t easy.
Opening a bottle of wine without a corkscrew – not easy.
Alerting your best friend to the huge, slimy, green booger hanging from her nose – OK, that one better be easy or you don’t deserve a corkscrew!
Talking to friends about the differences between our children – really not easy.
Can you think of one thing that isn’t made easier by talking about it? But starting that conversation is probably the hardest part.
The biggest surprise I’ve had from this blog is how it has started conversations that otherwise might be avoided – maybe not intentionally, but out of comfort and convenience.
I think that’s just damn cool. Of course, since I write better than I speak, it can make for weird moments where I know I should have the right answer but… I don’t.
Here’s the thing. I think we all want to talk about things that stand out as differences or seem imperceptible yet nag at our consciences. I’ve found it’s a tremendous relief when someone asks me a question that’s been on their mind. Often, just a few moments into the conversation makes me realize how very similar we are – how shared our worries truly are.
So, in case you’re just joining our program, The Husband and I have been married for two years and have two children under two (we like even numbers; we don’t plan to acknowledge years 3, 5 or 7). Our eldest, Charlie, happens to have Down syndrome. I knew virtually nothing about Ds before getting the prenatal diagnosis, and now I know just slightly more.
I don’t have all the answers, but chances are good that if you have a question, I’ve had the same one before and have at least a clue about where to find an official answer. Or a corkscrew. Both of which can be handy in that circumstance.
Sometimes, there are no official answers. For example, when is the right time to talk with your children about how Charlie has Down syndrome? What do you say? Where is the balance between maintaining your child’s innocent perspective that everyone is alike and recognizing that differences do exist?
On the one hand, I want my kids to embrace diversity (which, by the way, is not just ethnicity; diversity of thought, age, gender, ability… anything that adds an ingredient to this human soup we’re all a part of represents diversity). I know there will come a day when Charlie or Emma points out an obese person or an Asian person or a person in a wheelchair and asks why.
I’m really hoping their recognition of differences doesn’t materialize with, “Hey, Mom, that guy’s butt is even bigger than yours!” Yeahhhhh….
When we knew Charlie had Ds, I thought of 27 million scenarios but two in particular: first, the conversation I would have to have with him one day about what Down syndrome is and why not everyone has it and what it means.
I also knew we would have more children and at some point they would realize their brother was different from the majority of their friends. The Husband and I would have to discuss why, help them understand and help them explain things to their friends.
While these scenarios scare me and make me want to put my head in the sand, they also make me want to over-prepare. I’ve been caught off-guard enough in my life; I know it’s worth over preparing for something you fear. With a mother who taught first grade since the dawn of time, I also knew books could be a solution to this dilemma, and I began to search.
I found two children’s books that I absolutely love: We’ll Paint the Octopus Red and My Friend Isabelle. I’m sure there are others; there always are. But these books provide a beautiful start to a conversation that will be needed, either proactively or reactively. Each addresses a child’s experience with another child who has Down syndrome. One has a little girl named Emma; the other has a little boy named Charlie. Pure coincidence, but one that warms my heart.
So, why do I want you to point out how my son is different? I don’t think I do; I think what I really want is for parents to acknowledge the differences so your child can understand them and not fear them. All children are naturally curious, so why not help guide that curiosity toward better understanding, which typically leads to greater compassion? Address it head on, then move on to the important stuff, like ice cream and puppy dogs and where the hell did Daddy put that corkscrew.
A few weeks ago, Charlie had his first nose-to-nose encounter with a dog. It petrified him. After all, we have two cats (one of whom could rival many dogs’ size, but still, he’s a cat) and Charlie has known only cats. It made perfect sense for him to be wary of an animal that was bigger, more boisterous and slobbier than what he has been used to.
Now, I’m not comparing people to animals. But consider the concept. I’ve found that most people’s aversions to lifestyles or people different from themselves are based on lack of understanding and familiarity. Humanizing an issue is one path to common ground.
Surrounding yourself with diversity of thought, gender, age, ethnicity, education, experience, height, weight… on and on. It’s not easy, is it? It takes work.
We can choose to put our heads in the sand and hope everything works out. Sometimes, it will. (If by “working out,” you mean no one talks about elephants in the room and thus avoids overt discomfort.)
But what if we decide we want more out of life? More for our kids, more for ourselves. It’s risky to embrace change, and it’s natural to resist it. But what if, every now and then, we chose to embrace that moment of utter discomfort for what it signals: a turning point, an evolution, a moment of opportunity to grow.
You’ll never be as prepared for that moment as you’d like. I’ve made some utterly moronic statements in my life at moments when I was caught unprepared. I once alerted an ex-boyfriend to a beer sale at Costco after running into him and his new girlfriend, both with beers in hand.
Really??? That’s what my brain came up with in that moment of opportunity? Yep. It was a classic case of wanting to say something of value when a smile would have done just fine, thanks. We all want to have the right thing to say at the right time.
Acknowledging that no one person has all the right answers is a huge step toward realizing how much we all need each other and our differences. Realizing we need to talk about them so they unite us rather than cause those awkward unspoken divisions – well, that just about makes you brilliant in my eyes.
And if you can find the corkscrew, I just might love you forever.