Jun
25
2012
2012
Jasper and I took a little walk this afternoon. We had a great time but unfortunately he did step into the lake and decided he had enough, lol.
Jasper and I took a little walk this afternoon. We had a great time but unfortunately he did step into the lake and decided he had enough, lol.
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.
One of my strategies for keeping sane this week, has been to slow down. Slow down my life, slow down my mind, simplify even the simplest things.
Tuesday, Jasper had a speech therapy assessment – mild language & speech delay and he’ll need semi-regular sessions.
Wednesday, I spent half in a procastination coma but managed to put together my new cheapie elliptical, twice, because i put some parts together backwards.
Thursday, I burst into tears infront of the Autism parents group (we’ll have to pull out of there soon. My choice).
Friday, school + therapy + playgroup + force fed by my parents
Saturday, 2 kids + rain induced cabin fever
Sunday was a great place to start my plan for a simple day. Regan is home, no appointments to get to and nothing to confront, there’s no rush to do something or be anyone else but ourselves.
There’s time to bake mini apple pies from whatever is in the pantry.
Time to play dinosaurs in the backyard.
Time to take a swing in the sunshine.
There will be alot of hard work and hard time ahead of us, but there’s also alot of light and alot of love. There’s alot of joy in the simple things that we get to do today, because we can and because we have each other in these moments.
Even before the diagnosis, but especially since, I’m becoming more and more purposeful on how I spend my time. By myself, with my kids and with my family. Making time has never been more important and I’m very aware of how things can change not just because of Rett Syndrome, but also because that’s what life is about. Change. Surprises. And you can either roll with it, or not move forward at all.