Sunday, June 27, 2010

My support system

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 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?


  1. Dear Caryanne,
    I know exactly how your mother feels. My 28 month old grandson was diagnosed last Nov. If she would like to, I would love to have a fellow SN Grandma to chat with. Thank you for sharing Ben's story, he and Daniel are adorable!
    Earl's Nana

  2. Hi Carol - I'm not sure if she'd want to or not...but I can definitely ask. I tried to access your profile but can't. Do you have an email address you'd like to share with me? If you don't want to share it publicly, you can email me at


  3. That is awesome. Having kids like ours can be SOOOO isolating! I often feel so alone and it is hard, at times. We live in a VERY rural community and although I know several families they all live over an hour away and it's too hard to meet regularly.

  4. Hi Cary, I'm sure you remember me, I too am a grandmother of beautiful Hailey who has C.P. and we absolutely are going through the same thing, and it is particularly hard for me to watch my son go through this. My son and his family lived with me until recently when they moved out of my home to their own so that Hailey could go to a better school than my town had to offer. I am very much involved in her life and I try and help as much as I can. being there anyway that I can, I like to give them a break by having Hailey sleepover occasionally,I take her swimming on Wednesday nights, I also try to do small fundraisers to help raise money for CE, and now beginning on Sundays I am having a woman come to our house to teach our family sign language. I have heard lots of comments about things not being my decision etc. When I had to approach my boss to say I needed to leave work early to take Hailey swimming, he said to me "She's not your daughter" I had a fit, I yelled and screamed at him, that is the worst thing anyone could have ever said to me. To me it is exactly the same as if it had been my child, I only feel more helpless. This is something that I cannot fix, or put a band aid on and tell him that everything is going to be alright. Sorry for such a long comment and please let that other grandmother know that she can talk with me if she likes. I am also living this life.

  5. Well, there's the fabulous group of women inside my computer. Really, love you guys!

    And then, of course, there's been Charlie's therapists although sadly, we've left them behind now that he's three.

    I guess that's mostly it.

  6. My people are you guys, in my computer, and my therapists, sister, and best friend. My mom is utterly useless, sometimes she can't even remember Hannah's diagnosis and just kept asking me if she was walking yet. She has always been rather self absorbed, and yet it is still painful to me that she offers no support. I envy those of you with moms who are in the game with you, since from as much as I know now, there is nothing and no one like a mom. I wish mine were more mom-ish. Good thing I have my sister and you guys!!

  7. My support group is mostly online - my bloggy friends and those on my Yahoo hypotonia group. Not really any other SN parents yet, but I'd guess that will change when preschool starts.

  8. 人不能像動物一樣活著,而應該追求知識和美德............................................................