We Have Nothing in Common

From time to time I get a comment about my blog–either in person or via the ‘net that goes something like this, “I don’t know anything about cerebral palsy/ABR/what you’re going through.”

I will confess that I love these comments.

For a very long time this blog was for me. It was a chance to vent and organize my feelings when they threatened to eat me alive; It was a place for me to escape. It was also an opportunity for me to interact with other parents of special needs children–my own little support group.

But when I get comments from the non-special needs community–from people who know me in real life or people who don’t–that’ s when I get all warm and fuzzy and think that this blog can be more than just a selfish thing. It probably sounds naive and optimistic, but I think that this blog can be a place where people can learn about disability and disabled children without fear or worry about offending someone. I can let it all hang out and they can see that while my child doesn’t walk or talk, he does smile and giggle, eat peanut butter sandwiches, dress up for Halloween and finger paint. People have a chance to really look and see beautiful blue eyes and a halo of curls.

I don’t know how it was for everyone else, but I was raised that it was rude to stare. It is rude to stare, but in my eagerness to be polite, I think that I never spent more than six seconds looking at a disabled person. I would fix my eyes at some point about three feet above their heads and act as if they weren’t there. Doesn’t take a rocket scientist to see that wasn’t exactly a solution.

I’m happy that this can be a place for everyone–not just the special mommas. This is a place where someone can stare. My deepest and most Pollyanna-ish wish is that we could all learn a little something from each other. I can read about normal kids and see that sometimes Charlie is completely normal or that sometimes the moms of typical kids want to rip out all their hair in frustration too. You can read my blog and find out that I’ve actually driven forty-five minutes to buy a pair of shoes for a kid who’s feet don’t touch the ground or that my saddest moment in the last six months was when Charlie ripped my iPod out of the player and it didn’t work for two days. I can read almost any blog and see that we all deal with illness, family drama, Target shopping, and difficult decisions. The distance between two people isn’t nearly as far as we imagine. We all have joys and sadness and heartbreak and triumph. The lens may be different, but the feelings really aren’t.

So if you read this blog and have “nothing to say” then that’s fine by me, but don’t feel like you don’t know anything about my experience or that your input isn’t valuable. We’re all learning from each other.
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Comments

  1. Very nice points, Katy! You are right about the differences between people, not being that far. It can seem far, sometimes but everyone has their own battles and demons….

  2. Aw! Thanks for making a non-mamma like me feel welcome! :)
    And speaking of shopping, I think you totally need this bag- it's named The Charlie Bag, for goodness sake! (It's the holiday's so of course I'm spending too much time on Etsy. :P)
    http://www.etsy.com/view_listing.php?listing_id=33118683&ref=fp_feat_1

  3. Very well said indeed.

    10-0?

    Wow.

  4. Nice points indeed. I got an email the other day that I always reference Jude's lack of abilities, but all some people see are just a normal smiley boy. The point of my blog tho is that he is different, and the challenges we face that you cannot see in the pictures posted.

  5. I just have to say how cute this picture of Charlie is. He looks so much like his Dad in this one it's crazy!
    Jan

  6. Jan–dad will be glad to hear that. Charlie's so fair that sometimes he feels like Charlie doesn't look like him at all.

    Shelly–that bag is awesome. I really like the red and black version.

  7. desperate housewife says:

    Thanks! I feel like that re: your blog, that's it's a great exposure to someone's actual LIFE, instead of just the medical side of the story, or even just the emotional, heartstring-pulling side. You give us all of it!

  8. I'm actually addicted to your blog and I myself don't have any children yet.

    Not that I ever got the impression from you that I should feel bad about reading but that post definitely made me feel welcome and I have learned a lot in the process and just could eat Charlie up!

  9. Nadine Hightower says:

    You know what I've learned in the 3 years I've known you?? You've gone from being about What She's Wearing to an informative Mom with a Special needs child.
    I miss the shoes and all, but I love Charlie. I love to see his progress. You have become a great mom. And you worried so much about it. Silly Goose.
    I am very thankful that I followed a link one day to your Space. You're the best!
    But I'm still the Harlot in the Red Bra.

  10. Great post as always Katy! And love the picture of Charlie…his eyes look fantastic! And he's super adorable of course.

    Keep the great posts coming…

  11. Well said!! Thanks for the Charlie pictures!

  12. What a nice post! I am sort-of getting used the the stares or the "non-stare stares".

    I have a child that has (dis)abilities – can't sit yet, let alone walk or talk! – and I just have to say that I still sometimes don't know how to react when we run into others with very involved children. I am always amazed at the people who come up to us or pass us by that know just what to do and I am striving to be that person one day! We are all still learning in life!

  13. Mamá Terapeuta says:

    Great post, I totally agree. That was the main reason why we started the blog and the only reason to be a columnist at a parent magazine here.

    I believe it is changing minds. No one can say, after seeing Charlie dancing to rap our Rocio laughing taking that tower down that 'disabled children' are miserable or live a miserable life, right?? :)

  14. Well, you know that you and I have a lot in common. I am learning about Charlie and you in doing what you do for Alan, learn about him. I think that you have so much to share, more should be coming to visit you and learn more!

  15. Such a beautiful and well-written post!!!

  16. I am the lucky mom of three great kids, none of who are disabled in any way…unless you count the oldest who can't seem to settle on a major in college and is slowing driving me insane :) But I started reading your blog when you had pictures every day of your gorgeous shoes and then I was all excited when you were pregnant and then I followed because I felt so bad about Charlie. Now I follow because quite frankly I am in love with your entire family! Charlie is adorable and getting smarter and more advanced every day. Your hubby is just plain yummy :) You, you just make me smile with your determination to give Charlie the best and to help him become the best person he can be. I honestly don't know if I could have handled a child with special needs, but after reading your blog I do know you don't have to be a super mom to do it…you just have to love the person you are and the person you are raising. Thanks Katy, for blogging and for making those of us without special kids feel welcome :)

  17. Small Town Girl says:

    I love reading about what's happening with you whether it's about what you're wearing and your cutey cute shoes, your art or what great progress you and Charlie are making. I've been with you for a long time now and I'm not about to go anywhere! :)

  18. Thank you for sharing. Your blog is helping me understand more of what my niece is going through with her child. We're all a beautiful combination of both "normal" and "different" simultaneously.

  19. Baylee and Blair's page says:

    Love your blog no matter what! And, it IS rude to stare… I have to remind my 4 year old about it all the time! :)

    Hugs – Tiffany

  20. Hi Katy
    Well we have been following your blog since January and you are the main reason we started ABR in Spring 09 on my daughter Annabelle who was 15 months old then. I would just like to thank you so much because if it wasn't for you and your blog and Charlie of course we might not have done it, and just like Charlie she is progressing slowly but nicely far more than was expected from the traditional therapists.
    Well you have also been there when I have felt down or demotivated, you are an inspiration to a whole community of special needs mammas out there who are ABRing through the night!
    Keep on doing a great job!
    Lots of love and hugs
    Sandi and Annabelle

  21. Right. On.
    I love your blog–for the reasons you mentioned and because you're just that cool.