Saturday was my youngest devil child's 4th birthday party. All her friends from school came along and everyone seemed to have a great time. I spent the entire time in the garden with the kids, avoiding the scary mothers. I don't know what it is about you ladies but when you get in a decent size group, you get all intimidating. My living room and kitchen were full of chattering and cackling, bitching about so-and-so, gossiping about someone else. Scary times indeed.
Our nephew, Jordan, came to the party too. He's the one with Muscular Dystrophy and the reason we are going to Costa Rica next year. It was heartbreaking to see how badly he has declined since we saw him last. He's gone from being fairly independent and using his wheelchair only for long 'walks', to being confined to the chair and relying on people for almost everything. All in a matter of months. We had him stay with us that night while everyone else went home (he was so desperate, as no-one else will have him stay because he's "too hard to look after"). That was when we really noticed how hard things were for him. His wheelchair is really heavy and, with his deteriorated muscles, extremely hard to move on his own. He has an electric one at home but it's far to big and heavy to take when he goes out with the family. For him to even pee, we had to wheel him into an empty room (just for privacy) and he does it in a bottle that he has to carry everywhere. I know how I felt at his age with my body changing and not really being comfortable with it, but add into that your Mum, Dad or Uncle having to undress and dress you or lift you in and out of the bath and I'm not sure I could have coped. I've never once heard him complain or ask why it happened to him, I'm sure he does, he is only human but he's so brave about it all. He knows that he'll die before all his friends and he's told his Mum that he's scared but he doesn't let any of it show. I just hope I can be as brave.
After seeing him, I am more determined than ever to raise money to help find a cure. We are aware that it is probably too late for Jordan but if we can help others like him, then it's well worth the effort. Please, visit our fundraising page and donate anything you can afford. We are desperately short of our target and would appreciate your donation more than you will ever know. New friends who have no idea what we are doing can find information here. Thank You.
On Friday, we are taking the devil children to their first gig. It's an open air concert in a local forest, which should be fun as the weather is so bad that a neighbour of mine has started building an ark.
We received the tickets the other day and on the back it says that umbrellas are banned as they could be used as weapons. 
So it looks like I have the flu booked for next week then. The band we are going to see wouldn't be the kind of thing I'd normally go to but, in keeping with devil child 1's new found love of The Jonas Brothers and other manufactured soft-rock-pop groups, we are going to see McFly. For anyone who doesn't have an 8 year old girl in the family, or is lucky enough to have never heard of them, enjoy:
I can't wait.
*EDITED TO ADD*
It's just occurred to me that McFly, as good as they are ( ) seem to have taken their song writing inspiration from here:
"Bravery is the capacity to perform properly even when scared half to death. "
Omar N. Bradley
Our nephew, Jordan, came to the party too. He's the one with Muscular Dystrophy and the reason we are going to Costa Rica next year. It was heartbreaking to see how badly he has declined since we saw him last. He's gone from being fairly independent and using his wheelchair only for long 'walks', to being confined to the chair and relying on people for almost everything. All in a matter of months. We had him stay with us that night while everyone else went home (he was so desperate, as no-one else will have him stay because he's "too hard to look after"). That was when we really noticed how hard things were for him. His wheelchair is really heavy and, with his deteriorated muscles, extremely hard to move on his own. He has an electric one at home but it's far to big and heavy to take when he goes out with the family. For him to even pee, we had to wheel him into an empty room (just for privacy) and he does it in a bottle that he has to carry everywhere. I know how I felt at his age with my body changing and not really being comfortable with it, but add into that your Mum, Dad or Uncle having to undress and dress you or lift you in and out of the bath and I'm not sure I could have coped. I've never once heard him complain or ask why it happened to him, I'm sure he does, he is only human but he's so brave about it all. He knows that he'll die before all his friends and he's told his Mum that he's scared but he doesn't let any of it show. I just hope I can be as brave.
After seeing him, I am more determined than ever to raise money to help find a cure. We are aware that it is probably too late for Jordan but if we can help others like him, then it's well worth the effort. Please, visit our fundraising page and donate anything you can afford. We are desperately short of our target and would appreciate your donation more than you will ever know. New friends who have no idea what we are doing can find information here. Thank You.
On Friday, we are taking the devil children to their first gig. It's an open air concert in a local forest, which should be fun as the weather is so bad that a neighbour of mine has started building an ark.
We received the tickets the other day and on the back it says that umbrellas are banned as they could be used as weapons. So it looks like I have the flu booked for next week then. The band we are going to see wouldn't be the kind of thing I'd normally go to but, in keeping with devil child 1's new found love of The Jonas Brothers and other manufactured soft-rock-pop groups, we are going to see McFly. For anyone who doesn't have an 8 year old girl in the family, or is lucky enough to have never heard of them, enjoy:I can't wait.
*EDITED TO ADD*
It's just occurred to me that McFly, as good as they are (
) seem to have taken their song writing inspiration from here: "Bravery is the capacity to perform properly even when scared half to death. "
Omar N. Bradley
VIEW 22 of 22 COMMENTS
(jeez, I almost feel guilty about that one! Little dog zingers are just too much fun, can't stop myself
Got a big day today....job huntin' as usual, but then I'm hoping to find out whether or not I scored well enough on my state test for Employment consultant to get an interview for my old job. What a pain in the ass! You would think that having done the job for 6-7 months would make me a no-brainer for at least an interview...but no, this is the State we're talking about here, they don't do no-brainers
I have an interview tomorrow for a job working for the State in Veteran's services, which would be cool as well. I'd obviously take a job elsewhere, but I'd certainly prefer to keep working for the State. Benefits are amazing, they pay well and it's kind of nice to feel like you are giving back to the community a little bit too, you know?
Tonight is my sleep study. *Boo!* Get to sleep in a hospital bed all wired up to god knows what! Oh, and I HAVE to wear pajamas
How was your weekend?
I'm sure you felt a little bad about the room , but really handled it in the best way possible since you were willing to show her what your expectations are. I find that's when the trouble starts most of the time with kids!
Have you seen the Dark Knight, or just want to see it? I'm interested after hearing the buzz about it, honestly mostly due to it being Heath Ledger's final performance. I really admired him as an actor, and think it's so tragic that he in essence took his own life.