I can’t believe we’ve just passed week 4 of the school holidays. That means the kids only have two more weeks before they all start a new school year. And with Paddy, my youngest, finally going to “big school”, it’s going to be a big one. Unfortunately, we haven’t had our family car this week, which has made it difficult to get around. We were lucky enough to be given a replacement car, but it’s only a 5 seater, and the 7 seater we have won’t fit James’ wheelchair if we all go out together, plus the kids get sick in the very back seats. So we have had to take 2 cars each time we go out. On the upside, it’s been raining so we’ve spent much of this week in the house.
This week, my sister came to visit. She has spent the last 12 months living and working in London, and we missed her greatly. Having her back on home soil has been very reassuring, especially considering how crazy the world has become with so many tragedies. I like knowing she’s so much closer.
Anyway, onto my weekly images. As you know, I’m doing my third 365 Challenge this year, so I’m sharing those images with you. Enjoy.
He’s five now, and he has his own bed. It’s a racing car bed, one of those awesome Little Tikes racing car beds, the kind of bed that all little boys go crazy over. He shares a room with his sister, and each night they go to sleep without fuss, like the good kids they are. But every night without fail, around midnight, he comes down to my room and crawls into my bed. And he always brings friends to keep him company, with names like Hero, Slush, Scarum, Coconut, and Stripes. Every night, he carries down his team of mates and they all climb into my bed and fall asleep. Together. Paddy and his friends. And he holds them tight so they won’t fall out.
I don’t know how much longer this will continue, but I’m not so worried. I know he won’t come to sleep in my bed forever, and the bond it has created between us is very special. I am his safe place, his security. He knows I will watch over him, I will protect him. He doesn’t like to sleep alone, that much is obvious, and that’s not a bad thing. If he gets to 16 years of age, and he’s still crawling into my bed, then I will be concerned.
But he’s only 5. Five. He’s still a baby. And he’s my baby.
There’s something so magical about a sleeping child. I often wonder what they are dreaming of at that exact moment.
I didn’t take any decent photos today. In fact, I think I only got two and they certainly weren’t worth posting. But the great thing about this being MY 365 project is that I make the rules up as I go along.
Today, I edited one of my sister’s incredible photos from her trip to South Africa. She went on a 3-day safari and saw some amazing sights. I asked her if I could edit a couple of her images so she could have them put onto canvas or into a book, and she said yes!
I knew from the moment I saw this image exactly what I wanted to do. I created a mother and baby photo, with a little help from photoshop. And I love the end result!
OMG!!! I want to go on an African safari!! Here’s another photo that Jasmyn took!! Yes, I edited it for her, but OMG!!!
“I never really thought about how when I look at the moon, it’s the same moon as Shakespeare and Marie Antoinette and George Washington and Cleopatra looked at.”
― Susan Beth Pfeffer, Life As We Knew It
Because being a kid is thirsty work . . .
The cure for anything is salt water: sweat, tears or the sea.
~ Isak Dinesen
He told me this week he doesn’t like his life. As tears streamed down his face, he confided in me how unhappy he is.
Here we are, week 4 of the school holidays and he hasn’t heard from a single friend. It’s been like this ever since we arrived back in Australia. A few weeks ago, he secretly grabbed his dad’s phone and sent his “best friend” a message, asking if he’d like to come over. He said yes. His dad dropped him over, and remarked how awesome it was that he and his wife were able to have a child-free night (I have no idea what a child-free night is, but I digress). James had a lovely time with his friend, and then by 8am the next morning he was gone. And James hasn’t heard a single thing since.
I don’t know about other Duchenne families, but it always seems to be us making the effort and not the other way around. No one ever goes out of their way to see if James would like to hang out. Not one single friend. Ever. The last time James was asked to a friend’s place was way back in England, in 2009 or maybe 2010, when his best friend Taylor asked him over for the afternoon. It was one of the best days of his life – the smile on his face after that playdate is something that I will never forget. And Taylor’s mum and I have have remained friends ever since. But that was the one and only time he’s ever been asked to a friend’s place. He’s going into year 5 now. My daughter hangs out with her best friend pretty much every week, they spend many happy hours together. But not James. He sits alone.
We try to make him happy. We try to organise outings, but where do you take a boy who can barely walk, and who is now losing the use of his arms? A boy who can’t even do Lego for very long because it tires him out? A boy who gets tired even sitting on a sofa and has to lie down? We can take him for lunch, we can take him for long drives, we can take him to the movies. But there’s not many other places we can take him. The beach? No longer an option. A park? So he can just sit there and watch everyone else have fun? I hate doing that to him.
The only thing he can do is take him to lunch/dinner, watch TV, play xBox, or use his iPad. He can’t even hold a book as his hands and arms are getting too weak. He sits there, playing alone like in the photo. Every now and then, a sibling will join him, but he gets angry with them. He gets angry because, yet again, he is forced to acknowledge the fact he has no friends and has to play with his siblings who are 4-5 years younger than him. He can’t talk to them about history or geography or anything else that interests him. And he gets both angry and jealous when he watches them go off and play like kids play, leaving him to play xbox. Alone. Again.
He hates his life. He hates that he can’t run, or kick a ball, or play cricket anymore. He hates that he can’t jump in the pool, or stand on a surfboard, or ride his beloved bike. He hates that he needs help to get off the sofa, or to walk up the two stairs at the movie cinema (he likes the higher seats). He hates that he can’t stand in the kitchen and watch me cook, and learn how to make the meals he loves. He hates that the only real interaction he can have with other kids is on Xbox, where they are at least equal. But who knows how long that will last. Eventually, he won’t even be able to do that. Eventually, he won’t be able to move at all. And I think he is coming to realise that.
And that’s why he hates his life. Because he can’t be a normal little boy. That’s all he wants to be. So why did life have to be so unfair to him?
He hates his life. Really hates it. And that tears my heart to shreds, because I can’t help him. I can’t be the friend he craves, I can’t be the person he confides in. He blames me. He blames his dad. He is angry with us all the time. My beautiful boy, the one that made me a mother and gave me more joy than I could ever have imagined. He’s angry because we can’t help him. He’s angry because he doesn’t know what is happening to him and why.
And he hates his life.
A child with Duchenne has arms and legs that feel like lead. The older they get, the harder it is to move as the muscles continue to waste away. So you can imagine that swimming one lap of a 50m pool is no easy feat. How about FIVE laps of a 50m pool?? That’s what James did – five laps. That kid, he puts most people to shame with his determination. He is the strongest kid I know. And I love him to bits.
I think my husband is training for Gold Coast 2018. Or not.
And lastly, is anyone else’s child obsessed with these? TY Beanie Boos. And if they aren’t, then make sure you stay away – because they SUCK YOU IN!!!
And that’s another week gone. With only two more weeks of school holidays, I’m sure I’ll have plenty more to share next week. Until then, don’t forget to follow the circle, starting with my dear friend (and very talented photographer) Julie Moses. And don’t forget to check in again next week! xx