The other day, I had someone comment that they needed something that warned people not to cross her. She suggested something similar to what this says......Good for her, I say!
The idea for this one came from a picture of some graffiti that said Revolution, in much the same way as this does. As soon as I saw it, I thought, this would be good for disability rights!
Like many parents of special needs kids, I have always found the saying 'God gives special kids to special parents' to be one of those things that is meant to make you feel good, while they are secretly thinking 'glad I'm not you'! So this is my way of setting them straight!
This one is dedicated to Charlie. Charlie was a little boy who only got to hug his mummy and daddy for 10 short weeks. I 'met' his mum on Facebook yesterday, where she is running an auction to raise money for the Royal Brisbane and Womens Hospital, where Charlie was born, and lived all but 6 days of his short life. Please go and support her efforts at Charlie Bear's Gift. In honour of his nickname, I have donated one of the teddy bears in my Cafe Press store to this auction. RIP little man xxx.
This design is available on a limited number of products in my store at www.cafepress.com.au/justjuniors. It is customisable, and has a space for your childs name, and their birth/death dates. It was such a hard design to do. And at the same time, a reminder to treasure every day we have with our children. I often feel so drained when I have to sit up with Samara night after night after night to keep her breathing. But then, I 'meet' someone like Charlie's family, and I am reminded, that I am blessed that I have a child to have to stay up with. And I would stay up every night for the rest of my life to keep her with me. My heart breaks for those who have had to say goodbye, despite all they have done. Thank you Stephanie for sharing your little man with us, and for your support of the hospital (that was also our home for many weeks!)
On a more personal note, Sara is now back home in New Zealand. Even with 5 daughters still living at home, I still suffer from empty nest syndrome! Alicia has been out in the world for 4 years now (we moved to Australia 4 years ago this month), but I'm still not used to it! It is especially hard when they don't even live in the same country! I wish so much I could go back, and do things differently, appreciate each day more, love them more dearly. I really am blessed to have a little one still. And I must admit, to clinging to the fact she won't grow up as fast as the others!!! LOL.
Samara seems to be sick again. Her ears cleared up, but yesterday she was all grizzly, and today she has spent the grand total of 2 hours awake. And both times she was woken up. Not sure what is wrong, but she is pretty miserable. That's the problem with having a child who is almost 3 but who has such a limited vocabulary. Good thing she is so cuddly. At least then I can comfort her if nothing else.
Today I rang to apply for the new Better Start funding that the government has brought out. Don't know if we will get it or not since I am a Kiwi, but it sounds like we will since Samara was born here. But I must admit, I am troubled by the fact that it only covers 6 disabilities. While Samara qualifies on two counts (the Down Syndrome, and she has a hearing loss of 55 decibels - the criteria being anything more than 40), there are many children out there who have disabilities that are a lot more disabling than her 2 put together. And they don't qualify. Simply because they don't have the 'correct' diagnosis. The 6 disabilities covered are Down Syndrome, Hearing and Sight losses, Fragile X Syndrome, Cerebral Palsy and Deaflindness. If your child doesn't fit one of these categories, they get nothing. Now, I know people with really mild CP but they are covered. I know people with mosaic DS who don't even show it, but they qualify. At a loss of 40 decibels Samara was still able to hear most things, and was only given hearing aids to help with her speech because she also had DS (this has worsened, but it shows how minor it is). Children with this mild loss qualify. Yet those with other chromosomal disorders, those with head injuries, those with a huge number of other developmental disabilities can't get the funding. What is wrong with our government? Please, no matter where you are from, check out this site where you can read more, and sign a petition to have this initiative made more widely available to all children in Australia with developmental disabilities.
