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.