Words, words, words . . .

Yesterday, I got annoyed. Nothing surprising there. I jumped up onto my high horse and took a ride. What annoyed me were memes being posted regarding Christmas. After what has gone on this year, it was the last straw on my haystack of annoying memes that I have seen this year. I posted on Facebook about it and set off a discussion about who we should and should not be wishing a Merry Christmas to although that is not what my point was meant to be about, nor did I intend for people to immediately start defending their faiths although it did accurately prove how powerful a meme can be and how fast a point can be misunderstood and swept away. A few people said that I should just focus on the sentiment behind the message and that is when I started thinking. Should I just focus on the sentiment? Isn’t that the problem?

See, the thing is words have power. They are not just semantics. They can be used as weapons. Just ask any mother whose child says they hate them if that didn’t sting despite knowing that their child didn’t mean it. We read a meme, emotionally connect with it and immediately share it. The people that share the memes that annoyed me are good, loving people. They wouldn’t mean harm to anyone and they are definitely not in any way meaning to disrespect another person’s beliefs. I know that so why am I still irritated? (And to be very clear, I am annoyed by the memes, not the people sharing them.) As my mother pointed out, these memes have been around for years. It’s not just religious memes; it’s political ones, it’s activist ones, it’s all of them. I’ll tell you why I am still irritated, because there is a very big difference between:

“Share if you believe that Christmas is about celebrating Christ and we should be wishing everyone a Merry Christmas, not Season’s Greetings or Happy Holidays.”


“Share if you believe that Christmas is about celebrating Christ and wish everyone a Merry Christmas or Season’s Greetings, depending on their beliefs.”

The first has a tone of condemnation if you don’t do their bidding (the word ‘should’ should be banned from the English language) and the second is more inclusive of those who don’t share the same faith. “Why is this so important to you?”, you might ask.

I won’t go into every reason why this is important to me but here is the headline. Your subconscious is listening to everything you say, read or do. It hears words. It does not judge the words as right or wrong, good or bad. It just hears them and embeds them into your belief system. So if you shout “I am enough” over and over again, you’ll find that your self esteem will raise simply because your subconscious is listening and says “ok, I am enough”. Sounds very simplistic but is amazingly effective. I should know, I’ve been controlling my depression and anxiety with that simple phrase for the last nine months. I’ve also been telling myself that “I have phenomenal coping skills”.  It works. I’m coping a lot better than I have in years and I don’t feel so overwhelmed so easily. (Thank you, Marisa Peer.)  The same works if you use the phrase “I want, I love, I enjoy” even if you don’t. Eventually, your subconscious will go “ok, I want, I love, I enjoy . . . ” and you do.

So, if you read a meme or article that emotionally connects with you, but don’t pay attention to the way it is worded or what it could be really saying, you are planting tiny seeds into your subconscious that you may not intend to or even be aware of. In your conscious mind, you are thinking “yes! I believe that Christmas is about Christ”. Your subconscious hears “Christmas is about celebrating Christ and we should be wishing everyone a Merry Christmas, not Season’s Greetings or Happy Holidays”. There is a divisive tone to what your subconscious hears. In the worst case scenario, one day, some demagogue comes along and starts to play with all those tiny seedlings that you don’t even know are there and, before you know it, you are voting for someone who you would never have voted for before. Some good, honest, intelligent people voted for Donald Trump, after all.

There are so many memes and articles bouncing around the internet and we share them because they resonate with us but we really must pay attention to how they are written, what they are really saying. They seem harmless but we need to be careful. When you see things like these over and over again, they can have an insidious effect without us even knowing about it. On the face of it, an article about a troll being put in their place appeals to our sense of justice and makes us feel vindicated but, when you stop and think about it, it is really an article about a bully being bullied. That’s not right.

Are they written in a tone of kindness, of inclusion? Feel free to share those bad boys. Could they be perceived as divisive, condemning, “I’m right, you’re wrong”? Stop those in their tracks. We don’t need “them” and “us”. Different does not mean less. I won’t even share a meme that says “Share if you think Donald Trump is an idiot” because that is essentially mass trolling. For the record, Donald Trump is not an idiot, he’s very clever in an extremely narcissistic way. He may be a misogynistic, racist bully but he’s not an idiot.

We must pay attention to the words we use and share. I never really thought about it until this year when I started to wonder how did we get to where we are. Words are how we communicate, how we express ourselves. They are the only tools we have to show who we really are and what we believe in. If we use kindness as our base line for all communication, then we should be able to communicate anything, including our faith, our beliefs, our stories. For the record, I love to hear about my friends’ and family’s beliefs, faiths and what they are doing. It’s who they are. The more we share and listen to with an open mind, the more we can understand. Understanding can lead to respect, tolerance and inclusion and that has got to be a good thing.



Being Harry Potter . . .

I was reading that JK Rowling fell off the billionaires’ list because she gave too much of her money away to charities. Good woman. It triggered a thought in me. Without meaning to trivialize the struggles, having a child with complex medical conditions or special needs is a bit like being Harry Potter in a world full of muggles. You get by the best that you can but your difference makes you feel a little bit isolated, a little bit disconnected, a little bit battered by life. You fight your own personal Voldemort on a daily basis, whether that is just trying to keep your kid healthy, trying to get them the best support you can or, often in hospital, just getting the doctors to put their egos aside and listen to you. Sometimes, it’s not letting everything get on top of you and push you into a dark hole. Sometimes, the battle is just trying to figure out whether your child is genuinely having a crisis or being a typical 9 year old and trying to pull a sickie. (Just got called to pick her up from school. Apparently, not a sickie.)

Then you go to somewhere like Shooting Star House or Christopher’s and, all of a sudden, you are in Hogwarts. Everyone understands. Everyone is different. These are people who fundamentally get what you deal with, even though their battles are different, even though their Voldemorts are different. Here, your child is normal. Here, everyone is magic. Here, you won’t get platitudes. Here, you won’t get “I don’t know how you cope” or “I couldn’t deal with what you deal with” or “I think you are amazing”. These comments are meant to make you feel good and you appreciate the kindness behind them but they still irritate. What else are you supposed to do? You are not superhuman, you are just a parent, like them. Here, a concern is not dismissed as something any child goes through.  At Shooting Star/Christopher’s/Hogwarts, we get to chat, play, relax, bond in an environment where we are not different in any way. You can’t underestimate the restorative power of that.

Parents of children like mine are so blessed, even though, unlike Harry, we don’t have a magic wand. It’s not an easy life, by any stretch. It takes a long time to grieve for the child you thought you were going to have. It takes a long time to come to terms with the hand that your child has been dealt. In my case, I’ve been through those processes over and over again. I anticipate having to go through them again. It’s like living as if you stand on quicksand, all day every day. Each time you go through those painful times, you can come to a place on the other side where you are eternally grateful, even though the knocks keep coming. It takes a conscious effort, a conscious decision not to get angry, bitter and twisted about it all. These children teach us so much and enrich our lives in a way that cannot be described. We live in an alternate universe, where there is much pain and suffering but, equally, there is much more joy and gratitude. It’s a life of extremes. The smallest achievement is huge. There are so many celebrations. The superficial is irrelevant. You learn to let go of the small irritants of life and focus on what is really important because we know it can be snatched away in the blink of an eye.

This is not to say that people without special needs kids don’t know what is important in life. It’s not to say that they don’t know how precious life is. They just know it in the way that we all know that one day we are going to die. It’s something we know but it’s far off and not thought about because it’s not imminent. It’s something on the distant horizon that does not need to be considered regularly. It’s the way that some people live their life in a way that endangers their health and greatly increases the chances of them dying prematurely but, until someone says to them, “If you don’t change X or give up X, you will be dead in six months”, they won’t do anything about it. Or it’s the way they read a meme that says “live each day as if it’s your last” and say “so true”, then carry on life as normal, even if they are not happy with said life.

How can I get frustrated that the window sill in my kitchen isn’t perfectly level or that the boiler doesn’t fit my cupboard perfectly, things that would have driven me crazy ten years ago, when my daughter could drop dead of a stroke at any minute?  I don’t like to think about it but it certainly gives you perspective. I’ve probably gone too far the other way. It’s hard to get stressed about things these days. ‘Things’ being the operative word. People and pets are worth the energy; things, not so much.

This is the life I lead, I didn’t choose it but I wouldn’t have it any other way. It’s really hard. So yes, I’d compare having a child like mine to being Harry Potter. Harry Potter could perform magic and walked around in a world of people who couldn’t, people who didn’t even know of Voldemort’s existence. Moo is a walking miracle, she IS magic and I am so very grateful to be able to walk in her world and the world of kids like her. I kind of feel sad that not everyone can personally experience what it’s like to have a special needs child and  its beautiful bittersweet wonder.