When I was writing my last post, I went looking around Barbara’s site, trying find where she’d written about Down Syndrome. I failed to find it, but became mesmerized by a picture of a child climbing into the bathtub. The picture surprised me so much that I called my husband over to take a look. The child scales the edge of the tub like a miniature mountain climber. I’ve never thought of that. I mean, it would be quite a feat for Charlie at his current size, but I never even pictured that scenario. Right now I lift him into the tub and in the future I hope to have a roll-in shower. It was black and white in my mind and now, someone had shown me some gray.

You think I’d be used to this by now–the constant change. Ever since I gave birth to Charlie I’ve felt like nothing is sacred–as if my beliefs have been thrown up into the air to land where they may.

I had to change my mind about parenting. I had to learn that his accomplishments and failures aren’t a reflection of my parenting. These are his battles; this is his journey–I am merely a guide.

I had to change my mind about teaching–about learning. I’ve had to accept that there are things that Charlie will never do–not because he can’t, but because he doesn’t want to. I’ve had to accept that I will have to bring him to the learning because he can’t always get there himself. I’ve had to get down on the floor and do things for him so that he can have that experience.

I have to change my mind about independence. In this country we put such a premium on independence, but why? What’s so bad about interdependence? Truth is, it doesn’t matter–me, my husband, our parents, our siblings–we’re all in love with this kid. What do I care if he needs me? I need him too.
I’ve had to change my mind about intelligence–that holy grail. As someone who was constantly rewarded for her academic achievements, I grew to really value smarts, but I’m starting to see that smarts don’t equal happy. I am still completely dedicated to helping Charlie learn as much as he can, but his cognition doesn’t rule my world. The ability to find joy in this life is worth so much more.

This boy. . . he’s teaching me so much.
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  1. Katy,

    Man, you get me. I love this post. Love it.

    Shortly after we recieved Fletcher's suprising, and devastating, MRI results (like, later that day) one of the nurses tried to explain to me that this is Fletcher's life to live, but I wasn't ready to hear it, but now I think I am starting to get what she meant.

    And that second to last line, man, you are so right. And I may even go as far as to say that is the key to parenting a child with special needs. Love them, teach them, encourage them to reach their full potential, but at some point, you need to check your (unrealistic) expectations at the door and learn to find joy with the incredible gift you've been given.

  2. That boy is amazing and so are you. You have grown exponentially since you became a mother. I do sometimes thing that it does take village to keep us all connected.

  3. The Henrys says:

    So true, finding joy is what it is all about!

  4. Katy,
    What a great post, friend. It showed me a side of you that I don't always see. Charlie is such a cutie and I love how you talked about interdependance….a connection that Faith and I share that is so hard for me to explain. Thanks for showing me that other moms feel those same things.HUGS….

  5. Lovely post. Thanks!

  6. Love the pictures!!!

    I really enjoyed this post, it really can be amazing how someone else can speak things that you just don't know how to put into words, thank you.

  7. Beautiful post, Katy! I feel the same about my little man…he is teaching ME. And, independence? None of us are truly independent. If we were, it'd be a lonely place to be.

  8. :)
    Change as much as it hurts while it is happening is so necessary for growth.
    Charlie is awesome and you are awesome too!
    It is wonderful that you share with us all

  9. You are always pulling the words right out of my mouth…you just have a more eloquent way of putting it.

  10. luckeyfrog says:

    You had recently posted about wanting to go to a church that's accepting of special needs kids, I think, and I found a post you might like!

  11. Love these pictures! We miss you. Hope to come again around the big 3 birthday.

  12. Love this! They teach us so much…don't they,