Every so often, I hear about someone with Rett Syndrome passing away and my heart breaks. In this past week, 4 little girls all under the age of 10 have passed away, and there is really no words to describe how that feels. Terrifying? Devastated? Angry?
This is the reality of Rett Syndrome and at almost 1 year after our diagnosis, it doesn’t get any easier. As a parent with a child that has Rett Syndrome, or any kind of life threatening disorder, you want to believe that it won’t come to that, an early death (ugh it took me 1 hour to write those words), but in most cases it’s just how it is.
So Rett Syndrome and I .. how would I describe it? For me, there’s like 2 parts to Rett Syndrome – the disorder itself, wild & unpredictable. You won’t be able to tell how it’ll present itself next week, let alone 5 years time.. You can get clinical and know the parts to it, but it’s never the same person to person.
The other part is how it makes me feel. It can make you crazy and it can make you inspired. It can make you appreciate what you have, and it can beat you down.
I know how I feel about Rett Syndrome is nothing in comparison to actually living with it, but I’d be lying if I didn’t say it doesn’t effect the whole family. I am always going to feel that chronic sadness, but I am always going to feel immense pride in my daughter. I never want the disorder to fully dictate how she lives her life, because we all deserve to LIVE and have no regrets. Rett Syndrome isn’t who these girls and boys are, these boys and girls are much more than that.
Rett Syndrome, to me, is just a part of the journey that some people get. And as real as the teeth grinding, breath holding, seizures, scoliosis, long QT, gross motor issues, and everything else is – love is just as real and as worthy of our attention too.
This year marked the first Christmas with our Rett Syndrome diagnosis. And it wasn’t half bad at all.
If you visit our house, you will see many toy boxes. They’re all filled with things we’ve bought Jovie because it was ‘age appropriate’. All of them are pretty much brand new and untouched because she never was interested in them – tea sets, xylophone, wibble wobble things, soft toys. I’ve likened it to toy boxes filled with my love and desperation to find Jovie something she would like to play with. I’m my father’s daughter – I do like to buy stuff, but sometimes all that stuff doesn’t cut it.
So it’s the first year that we know what Santa should bring Jovie, it’s the first time where we don’t expect her to be ‘at a certain level’. It means we can forget about what should be, and just have Christmas. I find that really awesome
Jovie’s first Christmas, 2009
This Christmas, 2012
bright dark and early yesterday morning, we piled into the car and set off to Sydney Olympic Park for our first Run4Fun event – all in the name of Team Jovie! neither Regan, the kids or myself had ever been in some sort of running event, but they added a 3km fun run/walk this year and I couldn’t resist the chance to 1. exercise, 2. fundraise for Rett Syndrome and 3. do something different.
our walk started at 7am, and we had a great time walking (briskly) the course with our friends around us. Jovie LOVED it, she loves being outdoors, even in a stroller.
Jasper actually had a great time and jogged/ran alot of the way around the 3km course with Regan. I think we have a future runner in the family…. They beat us by about 10 mins, lol.
a sea of amazing people running the 10km
Jogging to the finish line with Aunty Aislin, we’re up on the big screen at ANZ Stadium!
Afterwards we headed off to the amazing Blaxland Riverside Park for some breakfast and a play – if you’re in Sydney you should definately check it out. Get there early because parking is terrible…
We’ve raised $2,245 for Rett Syndrome Research in Australia which is AWESOME (and coincidentally, we would of been the 3rd highest fundraisers for the Run4Fun if they included Rett Syndrome Australia in their list).
Now it’s the next day and we’re totally buggered, thank goodness we had a day off! I think we’ll definately do the run again next year, so stay tuned for that!