Friday, February 11, 2011

Moving past grief

We're 2.5 years past diagnosis day and I feel like I can really say that I'm "mostly" past the grief. I honestly don't remember the last time I cried about Ben, or CP, or seeing "normal" twins.

We're a happy family. I've got 2 amazing kids and we're happy.

I had an interesting conversation with one of Ben's PT's last week..the one that does his casting. She continually tells me how amazing I am and how different I am from other moms that she usually deals with. I don't think she's ever heard a mom ASK to talk to the wheelchair people because she WANTS a wheelchair for her son.

So I thought about that for a while. Partly, I think this is because I read SO MUCH. I think I read something about CP every single day. But I'm not out there reading medical jargon or googling. I'm reading your blogs. Learning from your experiences. And one reason I think I was maybe a bit ahead of the curve on the wheelchair thing was because of this post by Katy at Bird on the Street and the comments made by adult wheelchair users.

But mostly though, I think this is because I've somehow managed to move past the grief and into acceptance. I've somehow stopped thinking about the CP and the brain damage as "something that happened to Ben". For me, thinking about it that way meant that he "should" have been different. He "shouldn't" have CP. He "should" be able to walk. And thinking like that was like a poison in my mind.

Somehow, I've managed to just think that this is how BEN IS. This did not "happen to him". THIS IS BEN.

And when I think that way, I stop crying. And I start to see Ben for who he is right now. And I'm so happy that I get to be his Mom. Me. Not someone else. Me.

And aren't I lucky?


  1. Yes, Cary--that post was a real eye-opening for me too. That's what I love about having a blog--the variety of perspectives.

    I think all the reading helps as well. At our last appointment, our doctor was talking about whether or not Charlie would walk and I said, "that's not my biggest concern." And it isn't--thanks to all the wonderful moms out there I realize there are lots of important things to be thinking about.

  2. I'm thrilled that the few minutes writing that comment have gone so far. I stand (sit!) by every word of what I said. Really pleased that Ben liked the chair, too.

    I'm developing a bit of a theory that the often-repeated link between CP and impaired spatial skills might just be the result of a few generations of people with more severe CP having no independent mobility - if so then the next generation or two's worth of both research and supposed common knowledge will see a big change.

  3. I get to be one of the moms reading your blog wanting to learn. To me, CP is really, really hard. I have a hard time not comparing it to Down syndrome, I get Down syndrome, I get Nichole, but Nina...not so much.

    You have no idea how much you have challenged me. I have finally cried over Nina's diagnosis, and I think this is a healthy and important thing for me to do. The fact that we chose to adopt a child with CP does not mean that it is any easier. Maybe it is the reality that she finally feels mine, and I am finally dealing with my child having a disability.

  4. You're awesome. I aspire to accept one day too.

  5. I, too, aspire to accept. Not quite there yet but getting better. I still cry just sometimes. Lately I have been talking to school system people as we get ready for the IEP transition meeting, and so far I have only cried one time. Whew. I consider that a victory.

  6. I don't dwell on things and what could have been or should have been. I also aspire to accept. Not quite there yet. I definitely accept Hailey for the beautiful girl that she is, she is my heart. But I don't quite accept how it happened when it could have been prevented. That is a tough pill for me to swallow.

  7. "Somehow, I've managed to just think that this is how BEN IS. This did not "happen to him". THIS IS BEN." From you lips to everyone's ears.

    I STILL have people come up to me and say things like "this shouldn't have happened to you" or "I feel bad you're like this." I wouldn't be me if I wasn't "like this," neither would anyone else if you think of it.

    And more power to you on getting a wheelchair. My mother tried for years to get me on with no success. I had to use an over sized stroller for way too long. I was 21 when I finally got a chair just for me. It was a dream come true, and some parts of my life became much better with it.

  8. you are lucky because u have a cute kid on your hands

  9. Yes! I have the beginnings of a post about something similar floating around in my head, based on a (very loving) family member telling me that they were "praying for a cure" for Maya. It bugged me on her behalf---saying she needs a cure implies that she's somehow broken. But she's just Maya---no cure necessay, thank you very much.

    I told them that instead they could pray for her continued growth and development, and that she learns quickly and stays happy.

    (Also, Ben is super cute!)

  10. Gorgeous post Cary!
    He is heavenly divine!!
    I'd have to say both equally lucky to have eachother.
    Hugs my friend.

  11. I'm so glad to hear you are at that point. I'm almost there, but not quite yet. At least I'm not crying anymore... I do believe that time heals a lot of things and answers a lot of questions for me. Anyway, acceptance (and celebration!) is a wonderful thing for you and for him!!

  12. I am now almost exactly 1 year and 4 months post diagnosis, while I have learned to accept, there are some things that still catch me off guard. It's such an interesting process. Like you, I'm always reading and learning. And you made me google at 1 am. ;)