Saturday, March 20, 2010

It's Cerebral Palsy Awareness Day and hello, world, my child is not a tragedy



It's impossible to remember exactly what I thought of cerebral palsy before I had Max. I'm pretty sure I could only picture a person in a wheelchair, but I'm not sure. I didn't know anyone who had it. I had no idea it could be mild, and I certainly had no idea of the complications it could bring.

Then I had a child with cp.

The words "cerebral palsy" sound pretty awful, don't they? They literally mean weakness (palsy) having to do with the brain (cerebral). The condition is caused by an injury to the brain sometime around childbirth. Max lost oxygen during birth, which is what caused the brain damage and resulting cp. Here's a good description of what cerebral palsy means from The Centers for Disease Control, although geez, how old is the photo of that little girl?!

Having cp basically means your brain doesn't send the right signals to your muscles, so they can be messed up (to use the medical terminology). There are four kinds of cerebral palsy: spastic, athetoid, ataxic and mixed. Max has spastic four-quad cp (another lovely sounding term), so he has increased tightness in all four limbs, as well as his feet, torso and jaw.

I was shocked to discover just how much the cp messed with Max's ability to eat; the tongue, as it turns out, is one of the body's most hard-working muscles. Chewing and swallowing require all sorts of intricate movements that may not come easily to someone with cp. Max sure does love to eat, but food and liquid dribble out. The other main way cp affects him is that he has a fair amount of trouble using his hands. Manual dexterity is a challenge, particularly in his right hand (the brain damage is worse on the left side of his brain). His arms are tight, so swimming is not yet possible. And he cannot speak clearly, because of tongue challenges and because his brain isn't sending his mouth the right signals. He also has cognitive delays.

So there's all the crappy stuff, and then there's the reality of Max. He is a really bright kid who's well aware of what's happening in this world (and who never lets his little sister put one over on him). He likes to learn, and picks up things quickly. The cp hasn't prevented him from walking or riding a bike. The cp hasn't prevented him from playing with trucks, coloring, downing ice-cream or doing all the other stuff little kids love to do. The cp has not affected his incredible determination, his spirit, his sunny disposition, his sense of humor, his fantastic attitude. Max doesn't yet know he has cerebral palsy. Someday, he will, but I'm not concerned it will change his perspective on who he is.

If you don't have a child with disabilities, the cerebral palsy may seem like a tragedy to you. I'm here to say, it isn't. Do I wish he didn't have it? Of course I do. But do I wish that I didn't have a temper? Yes. Do I wish that Dave didn't have such trouble listening? Yeah. Do I wish that Sabrina was more patient? Yes. We all have our weaknesses, and while Max's may be more involved and more obvious, they're part of who he is.

Cerebral palsy has not defined his life.

32 comments:

  1. Happy Awareness Day Max (and Ellen)! We're celebrating being different too! Hugs from Jack (and Heather)!

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  2. What a fantastic post. Thank you for writing.

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  3. I love it! Jack has CP, too. And before he was born, I couldn't have told you WHAT CP meant. Maybe it was the brain? Maybe intelligence? I definitely thought it was wheelchair bound for life. For Jack, it's mild. It affects how hard he has to work at things that come naturally. Even eating and seeing. But he's a happy guy, too.

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  4. Absolutely right...no one in this world is perfect.

    Beautifully written, informative, and so very clear about what awareness is.

    Thank you, as always, Ellen. I love the freedom with which you write.

    P.>S How do you get Max's teeth so dang white???? :)

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  5. Beautiful! This post should be on the required reading list for life!

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  6. Wonderful post! And Happy Awareness Day to ALL!

    I have something for you here: http://boobiesbabiesblog.blogspot.com/2010/03/awards-galore-and-7-things-about-yours.html

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  7. beautifully said, as always. may have inspired me to do my on cp awareness day post, or more likely just link to yours ;)

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  8. Say it loud, sister!

    Happy spring!

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  9. Oh, Ellen.... I AM so blessed to have met you! If you and Katy hadn't been at that table during Bliss.... my life would be different!

    Thanks for encouraging me to share Sadie... and not keep this all to myself.

    Thanks for celebrating Max ...

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  10. Happy Awareness Day! I love the cute photo of your son! I really enjoy your posts! :)

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  11. Hear, hear! Whenever I have to explain Orion's disability to someone, they inevitably say "Oh, I'm so sorry!" Well I'm not. Orion has, as you say, strengths and weaknesses, like we all do. His strengths are football and running and counting and singing rhymes. His weaknesses are tidying up, emotional immaturity and yes, his hemi. If I felt sorry for him all the time we'd never get anywhere, so I don't want other people to feel sorry for him either. He's a normal kid, he just doesn't have the same body control other kids have. :D

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  12. "It’s not what you look at that matters. It’s what you see." Henry David Thoreau

    Purple Superhero Max sees the world through such incredibly wise eyes as does his Superhero mom & family.

    Your writing helps others to see the world through Purple Superhero Max's eyes... we are all thankful for that chance to understand at least a glimpse into his vision.

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  13. Great post. My younger son has Down syndrome so we understand being different but I don't know very much about CP. We've been learning because my older son has a buddy at school that has CP. Thank you for sharing Max and your family's story.

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  14. I don't like when people refer to our 'situation' or 'predicament', it just seems so negative. Like CP, autism is part of the child, not the whole child. A considerable number of people just don't get this, they can't see past the big medical word!! This topic is very close to my heart, great post:) Jen.

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  15. WOOOO HOOOO, Max! I remember when I first heard those words....I didn't even know what it meant! I confess, I was igorant! But Faith would NOT be Faith without her CP. I have this bright, cheerful, loving, beautiful little girl who is not the tragedy, I was so afraid of!

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  16. I did not know it was Awareness Day! Same on me for not being a mom to a little one wit cp waiting a world away for me to come get im. Tank you for saring tis :)
    blessings,
    Tami
    PRAYING JEREMIAH HOME QUICKLY
    www.tillGodbringsthemhome.blogspot.com

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  17. Thanks for posting this, Ellen--reminded me that I needed to put something on my FB page today.

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  18. Happy CP day I know u are celebrateing at disney

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  19. You hit it on the nose. I'm sure I'm a different man, father, husband because I know what CP is.

    My little guy with CP is a miracle. We're blessed to have him to take care of (though I suspect he thinks he's here to take care of us).

    Thanks for this post Ellen. Best to you, Max and your family.

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  20. I loved everything about this post, and I've decided that you are my mama role model. I love the way you roll with things, when I seem to be crying over spilled milk these days. And, I especially loved this line (as it describes my hubby, and maybe every hubby in America?!): "Do I wish that Dave didn't have such ADD about listening?" Ha! Hugs to you. Hope you're having a great weekend. xo

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  21. Great post, Ellen. Although I don't comment often, I LOVE visiting! I'm here all the time! Love that post :)

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  22. My uncle has CP; obviously, he was born before me, so I grew up with him, knowing him as uncle jim for years, and not knowing he had cp until much later. He was uncle jimmy, who told me he was 11 when he was actually probably 23(and I believed him haha) and who caught me when I rolled down the hill on my plastic bike for hours. I noticed how fun he was, not that he had a mild limp or held his hand a little funny. I'm happy to say that I am lucky enough that cp never had ANY real connotation in my mind, and I think it truly was a blessing. My uncle is married with his own daughter, so anything is possible and we never know how any of us will turn out :-)

    -stephanie

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  23. My post is up on awareness day too: at http://gas-food-lodging.blogspot.com/2010/03/cerebral-palsy-awareness-day.html

    Thanks again for making me think about stuff I need to think about. You add to my life, Ellen.

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  24. Love this post! It's so true that CP does not define his life. Porter has HemiPlegic CP and it's a part of who he is but it's not all that he is.
    I'm so grateful for your blog---it buoys me up when I need it....thank you!

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  25. His weaknesses are tidying up, emotional immaturity and yes, his hemi. If I felt sorry for him all the time we'd never get anywhere

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  26. Sad to say I didn't realize that the Cerebral Palsy Awareness Day even existed. I am the "mom" of an 8 year old little guy w/ CP. I ran across your blogs and find them most inspiring and honest. Thank you for that and thank you for sharing..Hugs from West Virginia

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  27. I have never read your blog before, but as a Teacher of a Blended Preschool Program, I must say, I want the tee shirt too! I went into this field for the very reasons you wrote. People need to understand that a disability changes the way a child interacts with their world to some degree but it does not define nor restrict them! I have a beautiful classroom filled with typicals, a child with Downs, a few who are on the Autistic Spectrum and a handful who are Developmentally Delayed. I often have the joy of being able to tear up at their developments, at seeing some of their firsts. We sing, we dance, we learn and we celebrate. My world is messy and loud and unpredictable and completely perfect.

    I really appreciated your article. Thank you.

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  28. I just think of myself as a hipster, because typical=mainstream!!!!!

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  29. I just found your blog through Danielle's Foundation. I totally agree with you. I have 5 kids, 2 of which are twins and they both have cp. They let nothing stop them! I look forward to reading more from you!

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  30. I enjoyed this post. My daughter has a rare type which affects 1 arm or 1 leg only. If I felt sorry for Amelia 24/7 I wouldnt get anywhere.

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Thanks for sharing!