Every single time I log on, without fail, you ask me one simple question. Just one.
“What’s on your mind?”
If only my answer tonight was as simple as the question you ask me every single day. But it isn’t. Tonight, my answer is complex and, quite frankly, utterly heartbreaking.
You see, tonight I had to hug my son tight and dry his tears as he asked me “why is it so hard?”, and “why did it have to happen to me?” And I couldn’t answer him. Because I have no answer. I mean, what answer could you give to explain why a perfect and beautiful little boy would be dealt such a terrible hand in life? How do you explain to your son that life is random and shit happens? Because this IS shit. It’s absolute utter shit. He cried, big fat tears (and even snot tears), because his life is so hard and he can’t do anything, or play anything, or do what other kids do. I know some of you will suggest I tell him that there are so many other things he can do, and to look on the bright side and live in the moment. And all that other shit that people say to make themselves feel better. And if that’s what you want to say, then I suggest you go say it to someone else that will appreciate it. Because if you say it to me, I will just throw it back in your face and unfriend you. I don’t need to hear it. Not right now. Right now, I need to try and soothe my boy in the hope that he will calm down, stop hyperventilating, and start breathing normally again. Right now, I need to just let him cry it out and be angry with me and the rest of the world. Right now, I can’t do anything but agree with everything he says. Because it’s how his father and I feel as well. It’s just not fucking fair.
Today is Sunday. Many families here on the Gold Coast spend warm sunny Sundays on the beach, either doing Nippers or swimming or surfing. James has always loved the beach, especially the surf. But enjoying the surf is no longer a possibility as he fatigues quickly and can’t even maintain his balance when the smallest of waves hits him. And once he’s down, he can’t get back up. He can barely keep his body upright. It’s hard for him, seeing the ocean every single day, hearing how much fun his siblings or friends have at the beach, knowing that he can’t enjoy it. Oh yes, he has a beach wheelchair, but he’s 11 and he doesn’t want to be different. He hates that people stare at him, that they feel sorry for him, that they aren’t able to treat him like a normal kid. When we grow up, we all want to stand out from the crowd in some way, but kids are the opposite – they just want to be like everyone else.
Anyway, being Sunday we had to get out and do something as a family. But what do you do as a family when one child is not only wheelchair-bound, but also has immense body weakness and fatigue? The only thing we can do as a family is go somewhere for lunch. Let me tell you, going to lunch every single weekend becomes not only boring, but usually very expensive as well. And yet we still do it because that’s the only thing we can do together that he enjoys. He has no friends, he certainly has no social life outside of school. We even restrict our 10 year old daughter from doing more with her friends because she’s the only real friend that James has, and we will do anything to make him happy. I know that’s not completely fair on her, but she’s such a sweet and caring girl that it usually doesn’t bother her. Eventually, though, it will. Eventually, he will be left with no one but his dad and I.
Tonight, he asked me why his friends have birthday parties and don’t invite him, even though he asks them to his. Only one boy has ever asked him to his party, and that boy wasn’t even his best friend. Tonight, he was upset because the boy he calls his best friend had a birthday party and he wasn’t invited. I was hoping he wouldn’t find out, but you know how kids are – they like to talk about what they did on the weekend. That’s how he ended up hearing about it. He doesn’t want to go to school tomorrow, and has begged me to let him be homeschooled next year. Truth be told, I don’t think it’s such a bad idea. After all, he rarely has anyone to talk to at school, and he spends many lunch times riding his motorised scooter around the school. By himself. To waste time until the bell rings. Can you imagine what your time at school would have been like if every day was like that? With no friends to play with, or even talk to, riding around school by yourself on a scooter wishing the bell would ring? School was hard enough, trying to fit in and avoid the bullies. Imagine not having any chance of fitting in. Imagine kids constantly staring at you because you are different. Imagine being harassed and not having friends to defend you. Imagine having no one to play with. Imagine how lonely his life is. And imagine how, as a parent, it kills us to be so helpless, unable to make the pain and hurt disappear. Because tonight, it’s how I feel. That’s what’s on my mind.
You asked, Facebook. You just had to go and ask. If you really must know, THAT’S what’s on my mind. And I bet you now wish you’d never asked in the first place. Because ignorance can be such bliss.
Heartbroken and Helpless.