It's interesting. From pretty much the day that Ben was first diagnosed with CP, I've been frantically looking for support. I knew I couldn't travel this new path on my own and needed all the help I could get.
My first step was reaching out for help on a great twin forum that I was very active in called Twinstuff. They have a specific forum for medical and special needs. So I posted a question about CP and got a response from Kelly from Drake and Lulu. I was really clueless about the blogging world and she clued me in. I started out reading her blog and found lots more via her blog list. I thought I was in heaven. Here was a whole world of parents of special needs kids. There was so much great information...and not just information, but real life stuff.
Then I started wanting support from people "in real life" so I tried to start a support group in my area for parents with kids with CP. It never went anywhere. I told Ben's PT's, OT and doctors about it, but of course due to privacy laws couldn't actually give me the names of the parents I was looking for. I posted my information everywhere but not one single person got in touch with me.
So I pretty much resigned myself to the fact that my "support group" would be you guys....fellow SN bloggers. I was OK with that...I mean let's face it, you guys are a fantastic group!
And then over the past few months I've had a few experiences that made me realize that my support group is more than just you guys.
One afternoon a few weeks ago, I spent the afternoon at my mom's (without the kids) and we had a great talk. And I realized something. She's experiencing this too. She's going through pretty much the EXACT same emotions as me. Ben is her grandson. And she's had to deal with having a SN grandson. I'm not sure why I hadn't realized that this was affecting her too. And you know what? This might even be harder for her to deal with than me...you know why? Because she has to watch ME go through it! How hard must that be?
And you know who really knows how I feel? My husband. I mean he's going through this too. He's not a great communicator but once in a while we have a great chat...and we did just that just a few nights ago. And he opened up about what he finds hard about this whole thing. And it was great. It was so nice to come together and share our feelings about being a SN parent. Sometimes I feel like he's not that affected by this...but I know different now. He struggles with this too. He's just such a great Dad to our boys that I don't always see how he's struggling.
There are a few more people that I consider part of my support group such as Ben's therapists and now a few real life friends who have recently had their child diagnosed with CP. All of these people offer different things. Some offer information while others offer support simply by being part of this same club we've found ourselves in. But they're all INVALUABLE. I need all of these people. They're the reason I'm able to keep going. Keep being Ben's mom and Ben's advocate.
So what about you guys? Who's in your support group?