In 2014, author Stephanie G Cox published her first book, “Gentle Firmness,” highlighting how Christian parenting sets firm boundaries and gently helps children learn to cooperate. She typed the 500 page book...with her nose. This is interview #4 of 12 to share with all of you Steph's story about, "Life with Cerebral Palsy."
(click here to read the introductory post)
If you've been following this series of interviews with my best friend, Dara, and I, you know that we are trying to educate people about cerebral palsy. I have severe cerebral palsy. I can do very little for myself. I type with my nose and that is how I wrote and researched my book, Gentle Firmness. All glory to God!
You're probably wondering why I am writing a narrative instead of answering excellent questions by Dara and her children. Throughout this process, I've found that I really don't like focusing on my disability. I welcome questions and I want to educate, but cp is such a small part of me that I refuse to let it interfere with how I live my life. Maybe that's the word I should be using in my private conversations with Dara regarding why I don't like focusing on cp with regards to the different aspects of my life, especially the Holidays.
For example, Thanksgiving is a wonderful holiday. No, I don't cook because if I did, food would fly all over the kitchen. Oh my! Thankfully, my wonderful husband is an excellent cook and cooks a wonderful meal for us every Thanksgiving. On Thanksgiving, I'm sitting in the kitchen watching my husband make stuff, eating bites that my husband feeds to me to make sure "it's ok," reading my Bible, and just enjoying the day! We usually watch football and the Charlie Brown Thanksgiving movies.
Yes, I still need care. Yes, my husband still must feed me, dress me, take me to the bathroom, and do whatever else I need, but that doesn't interfere with our celebration. We don't think about it because it's just a part of everyday life.
It was the same when I was a child. The fact that I needed special care didn't interfere with celebrating Thanksgiving. We would go to my grandparents' house for Thanksgiving. My grandparents would make a delicious feast. Then, we celebrated Christmas because my grandparents would leave for Florida soon after Thanksgiving until spring. Oh, it was magical!
You're probably wondering why I am writing a narrative instead of answering excellent questions by Dara and her children. Throughout this process, I've found that I really don't like focusing on my disability. I welcome questions and I want to educate, but cp is such a small part of me that I refuse to let it interfere with how I live my life. Maybe that's the word I should be using in my private conversations with Dara regarding why I don't like focusing on cp with regards to the different aspects of my life, especially the Holidays.
For example, Thanksgiving is a wonderful holiday. No, I don't cook because if I did, food would fly all over the kitchen. Oh my! Thankfully, my wonderful husband is an excellent cook and cooks a wonderful meal for us every Thanksgiving. On Thanksgiving, I'm sitting in the kitchen watching my husband make stuff, eating bites that my husband feeds to me to make sure "it's ok," reading my Bible, and just enjoying the day! We usually watch football and the Charlie Brown Thanksgiving movies.
Yes, I still need care. Yes, my husband still must feed me, dress me, take me to the bathroom, and do whatever else I need, but that doesn't interfere with our celebration. We don't think about it because it's just a part of everyday life.
It was the same when I was a child. The fact that I needed special care didn't interfere with celebrating Thanksgiving. We would go to my grandparents' house for Thanksgiving. My grandparents would make a delicious feast. Then, we celebrated Christmas because my grandparents would leave for Florida soon after Thanksgiving until spring. Oh, it was magical!
I still had cerebral palsy, but it wasn't on anyone's mind. We were too busy talking, eating, playing, watching football, seeing Santa on the Macy's Thanksgiving Day parade, opening presents, and just doing what families do! God is great because before we are born, He knows who we can be. He knew that I would never allow my disability to interfere with my life. He knew that even though my family would have a fair amount of problems, they would treat me as a "normal" child. I am so thankful for that!
I didn't realize until I started this journey with Dara just how grateful I am that they never treated me differently due to my cp. Others did and do, but not the people who truly *know* me. My husband fell in love with me because he saw beyond my disability to *me.* I thank God every day for my husband who cares for me 24/7 with only help from God. I'm grateful that I can live a "normal as possible" life. Many people with severe disabilities can't. I am beyond blessed!
Christmas is my all-time favorite holiday! I love everything about it! It is pure magic! My husband and I (he does all the physical work) put up our tree and decorations the day after Thanksgiving and don't take everything down until mid-January. I tell him where to put stuff, and we take turns turns picking out where to hang ornaments on the Christmas tree. Again, having cp is the last thing we're thinking about even though I still require all of my usual care.
When we decorate, I'm focused on memories. "What year is that ornament? Awww, we got that before we got engaged. Oh, that was right before we got married. Hey, our first married Christmas. Oh, remember when..." Christmas music is playing. Incense is wafting throughout the house. We have a blast!
It was the same when I was a child. We would go pick out a live Christmas tree. They'd push me around in my stroller or wheelchair to see the trees and let me help pick one out. Mom would decorate the tree while I helped tell her where to put ornaments. I had an advent calendar that every day they'd help me with. And once I outgrew my fear of Santa, they took me to see Santa every year.
On Christmas morning as a child, I'd wake up super early yelling, "It's Christmas!" My siblings or parents would pick me up and either carry me or put my feet on the floor and let me "RUN" to the tree! Oh the magic of seeing presents under the tree. Then they'd give me a present and help me rip it open. I'd spend the rest of Christmas playing with my toys and falling asleep under the tree!
I haven't grown out of getting super excited on Christmas morning. I still wake up early yelling, "Merry Christmas! Happy Birthday, Jesus! Hurry up Chip! I wanna open presents!" My husband gets me right up, puts Christmas music on, and we open presents. Since we don't have family near us, we call lots of family after opening presents. Then we spend the rest of the day watching our favorite Christmas movies and eating another feast.
So, you see, just because I must deal with cerebral palsy every day does not mean I focus on it. I can live my life and celebrate the glorious Holidays without it even entering my mind or my family's mind. Yes, it is a part of me. I don't deny that. But, the Holidays go way beyond cp. To focus on the nitty gritty details of how I do the Holidays "with cp," I feel, would take away from the TRUE Reason for the season which is Jesus. His amazing grace and love! Cp ain't got nothing on that!
My husband and me last Thanksgiving 2013.
The delicious meal my husband cooks for
us every Thanksgiving. 2013.
Christmas is my all-time favorite holiday! I love everything about it! It is pure magic! My husband and I (he does all the physical work) put up our tree and decorations the day after Thanksgiving and don't take everything down until mid-January. I tell him where to put stuff, and we take turns turns picking out where to hang ornaments on the Christmas tree. Again, having cp is the last thing we're thinking about even though I still require all of my usual care.
When we decorate, I'm focused on memories. "What year is that ornament? Awww, we got that before we got engaged. Oh, that was right before we got married. Hey, our first married Christmas. Oh, remember when..." Christmas music is playing. Incense is wafting throughout the house. We have a blast!
It was the same when I was a child. We would go pick out a live Christmas tree. They'd push me around in my stroller or wheelchair to see the trees and let me help pick one out. Mom would decorate the tree while I helped tell her where to put ornaments. I had an advent calendar that every day they'd help me with. And once I outgrew my fear of Santa, they took me to see Santa every year.
On Christmas morning as a child, I'd wake up super early yelling, "It's Christmas!" My siblings or parents would pick me up and either carry me or put my feet on the floor and let me "RUN" to the tree! Oh the magic of seeing presents under the tree. Then they'd give me a present and help me rip it open. I'd spend the rest of Christmas playing with my toys and falling asleep under the tree!
I haven't grown out of getting super excited on Christmas morning. I still wake up early yelling, "Merry Christmas! Happy Birthday, Jesus! Hurry up Chip! I wanna open presents!" My husband gets me right up, puts Christmas music on, and we open presents. Since we don't have family near us, we call lots of family after opening presents. Then we spend the rest of the day watching our favorite Christmas movies and eating another feast.
Yes, I still have cp. Yes, I still require all my normal care, but we're focused on the birth of our Lord and Savior, Jesus Christ, Who, being God, chose to leave His Heavenly Throne to be born like all human babies and do what all human children do, then as an adult, be crucified on a cross, dying a horrific death despite being sinless, so that we can be free from sin and it's curse. Christmas is about Jesus. That's exactly what we make it about.
Presents! 2013
Our beautiful Christmas tree. 2013
Opening presents last year! 2013
From my family to yours, may you have a Blessed Thanksgiving and the Merriest of Christmases!
This took me two hours to type.
This took me two hours to type.
"For a child will be born to us, a son will be given to us; and the government will rest on His shoulders; and His name will be called Wonderful Counselor, Mighty God, Eternal Father, Prince of Peace"
Isaiah 9:6 NASB
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Right now...the admin of this blog has a fund drive going here: http://www.gofundme.com/ChairForSteph to help raise the $ for Steph to get a new wheelchair.
She's had the same one since she was in HS. 17 years.
She requires 24/7 care. So, she can't have a job. Her husband provides her with that 24/7 care. So, the two of them are not swimming in cash. A wheelchair that can do what Steph needs costs a lot. She went in for a consultation and they managed to get a quote of $5,500 for the one she needs. She feels like that's an amazing price but still out of their reach at this point. So, please! Let's help make this Christmas extra magical for her! Every little bit helps!
Thanks!
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Previous posts in this series
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