Thursday, December 1, 2011

On not being alone

I cringe to think where I'd be (emotionally) if I hadn't found this blogging world and this amazing, special needs, blogging community. 

You see...for some reason, the real world only seems to have normal people, normal couples, normal kids and normal families.  And for me in particular...normal twins.

But the special needs, blogging world?  Well, it has people with cerebral palsy, people with autism, people with down syndrome and spina bifida and on and on and on.  It has kids that need wheelchairs, and walkers, and crutches.  It has adults who need communication devices, guide dogs, and adapated vehicles.  It has families whose homes are filled with medical equipment.  And it has families whose calendars have multiple medical appointments week-in and week-out.

And even though, I know it's not really true that the real world only has normal families, it is certainly how it feels.  Like last week, I took the boys to their first introduction to kindergarten (an-hour long "session" in the classroom) and of course, Ben was the only one who arrived in a wheelchair.  And needed to be carried between tables. 

When I'm in the "blogging" world, I can talk about botox, and surgery, and appointments and it's "normal".  I don't get pity looks and comments like "I don't know how you do it".  In the "blogging" world, I can celebrate the tiniest bit of progress and know that the people "listening" will really "get it".  In the real world, I feel like I have to explain so much about what the progress really means that I usually don't even bother. 

In the "blogging" world, I can actually call up another mom (yes, Ellen - I'm talking about you here!) and get all sorts of fantastic information on what it's like when your child undergoes selective dorsal rhizotomy.  In the real world, people don't even know what cerebral palsy is, let alone what SDR is. 

And for some reason, most importantly (for me), in the "blogging" world, twins don't always do everything together.  Moms don't complain that they "can't keep up with their twins as they are always running in opposite directions".  Instead, there are twins that are both affected by special needs or twins where only one is and the parents don't know quite how to handle that.  There are twins that go to different schools and twins that don't really get to "play" together.

I guess what I'm trying to say here is that I would hate to imagine my life without this amazing community that I've found myself in.  Without it, I would feel alone and on the outside of "normal".  But with it?  I feel "normal".  My kids seem "normal".  And our life seems "normal".  Because in this community, special needs are the norm. 

How cool is that?

Stumbo Family Story

(I'm blogging as part of "CP Connection".  Click on the image above to see where it started and find other blogs that are participating.")

12 comments:

  1. You really need to write more often! I always love your posts!
    And you need to go link up this post!

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  2. Well I can certainly second everything you have said here! I don't know what I would do without my friends in the special needs community...real and virtual!

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  3. u hit the nail right on the head thanks

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  4. I loved this post!! I can totally relate. I take my boys to the indoor playground all the time and I have never seen another child there with a disability. Sometimes I feel like the only one who has children with special needs. Obviously I know this is not true but my blogging friends have truly made me feel less alone and have been a huge support - including you Cary!

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  5. I'm here by following the CP connection. What a great post! We adopted our daughter with CP when she was 3, but you are right, having the entire community is so amazing. Bouncing ideas and reading others triumphs, and having somewhere to post the triumphs, its amazing!

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  6. Totally agree! I feel so much less alone knowing that there are other awesome parents out there dealing with the same struggles...

    So happy to have found you, Cary, and many others for that awesome support.

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  7. Great post Cary. All so true. Where would I be without you to ask my questions to/get support from? xo

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  8. HI CAREY
    I HAVE A SISTER WHO IS TYPICAL DEPELOPING LIKE YOUR DANIEL! EVEN NOW WHEN I TELL PEOPLE I HAVE CP, THEY SAY WHAT IS THAT?

    BUT HERE IN THE BLOGGING COMMUNITY PEOPLE GET IT.. EVEN THOUGH I AM OLDER THEN YOUR BOYS YOUR BEN HAS GONE THROUGH SOME OF THE SAME THINGS I HAVE..

    IT'S LIKR NOE THERE ARE TIMES WHEN I FEEL OUT OF PLACE OR LIKE I DON'T FIT IN.. EVERYONE MAKES THINGS LOOK SO EASY AND YET I STRUGGLE TO DO SOME THINGS AND IT TAKES SO LONG!!

    MELSSA

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  9. Cary,
    great post, love your blog, thanks for stopping by mine love this CP connection- I am finding so many moms who are blogging too!
    yes I was talking about SDR, we have the gait lab in Jan to confirm he is a candidate and then hopefully get it scheduled! He will be there youngest at just 3, but he is so determined to walk!!! How old is Ben?
    Nice to connect with you
    Emma, Mark Henry's mom

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  10. Well, you already know how much I love and adore you (in real life to boot) I'm so glad we've gotten to know each other better through blogging!!!

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  11. Blogging has made a big difference in my life, too - getting to know parents in a whole new way.
    Barbara

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  12. I loved this post! It is so true. I also have twins, one with cp. I am just starting in the blogging world (only written one post so far), but I have been reading for quite awhile now.
    Thank you!!

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