kid – hey do you know what my name is?
jasper – is it jason?
kid – no, it’s cameron.
jasper – hi cameron, it’s nice to meet you!
i forget sometimes how grown up Jasper can be, even at age 4. how much he absorbs from Regan and I, and how much he is aware of things that go on every day.
i’m always wondering on how Rett Syndrome has affected (or is it effected?) him too – because if it’s certainly made me different, it’s made him different. to grow up with a sister that can’t play tag, or have a conversation with is hard for a little kid. he asks me now and then, why Jovie doesn’t talk yet, or why Jovie flaps her arms around. why she takes so long to climb the stairs. why is she screaming so much. he tells me that he wants 2 brothers every day now, and that breaks my heart a little because it’s something i can’t give him. but i can give him love & time, and give him as much support as i can.
today instead of working on some projects online, i took Jasper for a walk and it was great to spend that time with him. i’m always with Jovie, or Jovie & Jasper, but i definately need to make more Jasper time.
Failure is not falling down but refusing to get up.
A heartfelt thank you to all who have reached out to our family in the last week. I am mostly okay, still very quiet at times as though I’m willing things to stop, just for a minute. I’m a bit overwhelmed but we have alot of support around our family, which has made this week easier.
Therapy for me has been a small tub of icecream, cupcakes, strawberries and a blog redesign. (Aren’t the illustrations of us amazing?). Talking to my girlfriends, the mums at playgroup, new friends online and, of course, my husband Regan has been a great comfort to me.
I’ve read alot of stories about families and how they’ve dealt with a Rett Syndrome diagnosis, and as I already knew – there is no one way to deal with something like this. For me, I’ve always been Jovie’s mum and I’ve always known Jovie as she is now. It’s not as if she had a major accident and we’ve had to adjust to a new life – Jovie’s always had her quirks just as I’ve always had black hair and a tendency to ramble. For us, it hasn’t been a matter of ‘shock’.
The grief is in the unknown. Knowing what could happen, but not knowing how bad it will get is hard. But only thinking about the hard times, is no way to live. You have to balance the good with the bad, know that yes things are going to be tough but your dreams never come true without working for them.
So, I work for them.
A smile.
For one more submarine cubby house.
For their future.
And I’ll deal with the sadness as we go because life is way too precious to spend worrying about the unknown.
experimenting with colour & texture, tonight
funny where your mind wanders when you’re doodling in photoshop…
