Monday, March 25, 2013

Cerebral Palsy Awareness Day 2013

Today is Cerebral Palsy Awareness day.

In the interest of awareness, to help people understand more about Sadie, and about CP, here are some things you should know about her. 

1) Sadie is just like other 3 year old girls.  She loves to get dressed up, she likes it when we fix her hair and make her pretty.  And she likes to be around other children.

2) Sadie gets frustrated when we don't understand what she's trying to tell us.  Her physical limitations reach beyond not walking or sitting, not being able to speak is one of the most limiting things she lives with.

3) Sadie goes to preschool and is in a class with 7 other little kids who are just like her.  Her teacher works very hard to help these kids touch things and hear things and experience as much of the world and learning as possible.

4) Sadie has a visual impairment called Cortical Visual Impairment.  This means that her eyes see, but her brain doesn't interpret the information.  She often responds best when people talk to her instead of when they wave at her.  Many people try to give her toys, but if they don't make noise then she generally doesn't enjoy them much.

5) Sadie is physically disabled.  Cerebral Palsy is not contagious, don't be afraid to touch her or interact with her.  She loves people.

6) Sadie's favorite thing is to be in the water.  She loves to take baths with Mama and she loves to go swimming.  If ever she's in a bad mood, the water will calm her.  If she's tired but just can't calm down enough to sleep, the water will relax her.  And if she is not feeling well, I know I can always get a smile by putting her in the water.

7) Sadie has a feeding tube that goes directly into her stomach.  However, she loves to eat.  She loves food and she's getting better at eating it.  But she needs the tube because she can't drink.  And sometimes we give her food in her tube because she is mad and can't calm down or she needs to sleep.

8) Sadie used to scream in the car.  Every trip.  Now she likes it.  Her favorite thing is to ride with the window down so that the wind will blow in her hair.

9) Sadie has a kitty named Yuri.  Yuri often sleeps on Sadie's bed at night when she's going to sleep.  If she's really upset, he comes and lays against her back like he's reminding her that she's gonna be okay.

10) Sadie has the best smile ever.  When we're out in public strangers often stop and comment on how pretty she is.

11) As a result of Sadie's brain damage, her head is small.  Because her brain didn't grow, her soft spot closed up when she was very young.  However, she has the most amazing red curly hair that nobody ever even notices that her head is small.  Her hair is her crowning glory and always the first thing people comment on when they meet her.

12) Sometimes Sadie needs to move.  When she was little we bounced her violently.  Now we rock her.  Violently.  We believe that this scratches some kind of itch in her brain.  It's very physically demanding, but it stops the screaming.

13) Sadie really loves to be outside.  She loves to feel the wind in her face and her hair.  She loves to have the warm sunshine on her skin.  We go for family walks almost every Sunday morning.

14) Sadie takes medicine for reflux.  It may help with the burning, but it doesn't help with the spitting up (we call it erping).  We often have to change her clothes multiple times a day and many of her shirts are stained.

15) Sadie has some really good ideas.  Someday, I hope that I can help her communicate them more clearly with her body and her words and her heart.

Sadie can do so much more than we ever expected, more than anybody ever expected.  I can't wait to see what she will become.  I can't wait to see how she will interact with her brother, and how many friends she will have as she continues through school.  We celebrate Sadie everyday at our house.  We celebrate her little accomplishments, we celebrate what she almost does, we celebrate what she did yesterday, but couldn't quite do today.  She is our daughter, she made us a mom and dad, and we love her more than we could ever imagine.

Next time you see someone with CP or another disability, please take a moment to stop and think, think about Sadie.  Please don't assume, don't call names or judge.  You are looking at a person, not a disability.

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