She fell again. She falls often. She falls down and gets back up. This time – like many other times – she wasn’t thinking about walking or balancing, she was playing and squealing and laughing like little girls do when they play, and in keeping up with the other girls she took a wrong step. She barely had time to break her fall, but she fell on something soft, we could tell she wasn’t hurt…on the outside.
It was Thanksgiving break and grandparents were visiting as were some family friends. Everyone asked if she was okay. She pulled to a stand and leaned against the couch, hiding her face.
“Is she okay?”
“Yeah.” My husband said, “I think she’s embarrassed.”
I walked to her and whispered in her ear, “Do you want me to pick you up and hold you?”
She nodded.
I sat on the couch with her on my lap, her face twisted trying to hold back the tears, “I’m so clumsy!” She said, “I’m so clumsy!”
“Oh sweetheart, that’s not true! Sometimes it’s hard for your body to move the way you want it to.”
“I don’t like having cerebral palsy!”
“I know.” I hugged her tight, “Other people don’t have to think about walking, you do. Sometimes, when you are playing and having fun, I bet it’s hard to remember to focus on how you move your body.”
“I’m so clumsy. I should use my walker, or use my wheelchair all the time. It would be better.”
“I don’t think you would like that.” I said. “You would want to get up and walk, even if you fall again.”
“No.”
“Yes you would, you know how I know that?”
“How.”
“Because that is what you do every day. Every day you know you can fall but you choose to walk. And you like to run, I know you like the freedom you get when you walk. And you know what else?”
“What.”
“It take s a lot of courage to walk even when you know you will fall. I think you have a lot of courage. You have more courage than anyone else I know.”
She smiled.
“We all have to work really hard at some things, and we don’t always get those things right. For you, it’s walking, for me -”
“It’s cleaning.”
I tickled her, “You get a raspberry on your belly for that!”
I know cerebral palsy will most likely be one area of my daughter’s life that she will often wish was different. Sometimes there is physical pain, or muscles that spasm and she cannot control them, and there are intrusive surgeries to help her gain more mobility or fix bone deformities; often she’s the kid that comes in last at the playground. Those are the struggles, and she is so aware of it, she doesn’t like it.
And we let her feel those feelings because I know what it is like to fight something in yourself that you wish was different. That is why in my personal life I depend on God, to help me see His plan and goodness in my life, even in the midst of hardships or my shortcomings.
I cannot take cerebral palsy away from her, but I can remind her of the good that has come from it, the good that happens in spite of it, and the person that she is outside of it. Her life is not defined by her disability, she needs to know that, believe that, and I will keep reminding her.
She might fall, but that is because she was standing!
She might trip, but that is because she was running!
She might have bruised legs and knees, but that is because she chooses every day to be courageous, to get up and walk…even if she falls.
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Ohmygoodness, this brought tears to my eyes!! I can SO relate to Nina’s feelings and I remember crying about my clumsiness to my mom, too. She responded similarly to you, and I’ve carried her words with me ever since.
You are such an amazing mom, and Nina is an amazing little girl. Thank you for sharing. 🙂
K, how did you handle middle school years?
Sixth grade (my first year of middle school) was really difficult for me. I’m sure it was tough for everyone, but it was especially hard for me because we went from having one teacher in one classroom to having to switch classes, and because of my balance issues, it was a stressful adjustment. My mom insisted that I have an aide walk me to my classes in the crowded hallways, and as you might imagine, as an eleven-year-old, I was mortified by that. Not only was it embarrassing, but it’s difficult to interact with your friends when a middle-aged woman is hanging over your shoulder listening to every word. 😉 So after a few weeks, we changed that, and I got to leave classes a couple minutes early with a friend in order to beat the crowds. That was much better, but it was still a rough year.
Seventh grade was way better!!! I had a couple of best friends to hang out with (and we remain best friends today!), and by then I had gotten the hang of opening my locker and switching classes. I think it just took me a little longer than everyone else to settle in, because my CP gave me so many more things to worry about, and as a pre-teen/teenager, it’s especially difficult to feel “different.”
I remember being worried right before seventh grade because my parents wanted me to take the elevator instead of using the stairs, and the elevator could only be accessed with a special key, so nobody else used it. I was terrified that people were going to judge me for using it, but in actuality, my classmates thought it was really cool that I got elevator privileges, and they used to beg to ride it with me!
In eighth grade, I slipped on some water at school and broke my femur. It required emergency surgery and I wasn’t allowed to bear weight on my leg for about three and a half months. As a safety precaution, I was home-tutored from December – June (because if someone had bumped my leg the wrong way, there was risk of it imploding…my doctor’s words, not mine!). Even still, my friends were awesome — they threw me a surprise birthday party and came to visit often, so I didn’t feel socially isolated even though I was no longer attending school.
And I absolutely LOVED high school. 🙂
Sorry for the novel! haha 🙂
Oh no, I am so glad you wrote all of that! As a mom I am “thirsty” to now about what others have experienced. I never thought about switching classes, but I know right now that alone would be so tiring for my daughter! I have no idea how she will be doing in the future, if she will be stronger, or if she will tire easily. I also do worry about injury. Thank you so much for taking the time to respond.
P.S. I did not enjoy 6th grade either!
I am so saving this post for future reference.
My little guys is about to turn 5 and starts school in 3 weeks. We’re all looking forward to it, but I am also apprehensive. Between the school, his therapy team and I, we have put as much in place before hand as possible. But he will no longer receive the early intervention therapy that he has been having.
We’re in New Zealand, so the school system, ages, etc are probably different, it’s currently the middle of summer (temps mid-high 20C [around 80F], so at least he doesn’t have to cope with frost and ice.
Tui, I will be praying for your son’s transition (and for you too!) big milestones coming up!
This made me think a lot. I have cerebral palsy and can’t walk and it makes me sad that your daughter can’t feel proud of walking whether she falls or not
“Because that is what you do every day. Every day you know you can fall but you choose to walk.” This goes for all of us. Bless you.
Yes, we all have choices to make that are not easy, but in the end the right thing to do. 🙂
Thanks for leaving a comment!
Oh my. So heart wrenching. My 18yo daughter with moderate cerebral palsy asked last spring why she can’t talk (signing the question to me). I really rattled me for a long time. No matter how prepared you think you might be, moments like these are tough. Sending hugs…
And I pray that what I say is uplifting, positive, and encouraging. You are so right, nothing really prepares you to what it feels, and how easy words can escape you and you just want to feel that moment with them because it IS hard.
Wonderful post! It’s great that your daughter has you to give her a safe place to feel her frustrations. My son who has DS spent his middle school years wishing for the Blue Fairy to turn him into a ‘real boy’ and I felt so inadequate to help him because of my own middle school failings.
Love your reminder that we all have things that are hard for us.
Thanks!
Middle school is hard enough, I hear so many hard stories from those dealing with disability, I am terrified of those years!
I just wanted to say that I stumbled on your blog and have been reading and I hate to hear when anyone feels down on themselves. It happens to the best of us, but it still isn’t fun!
I’m sure you have, but if not, I immediately thought of Kayla Montgomery and Sarah Sligh. Both women with disabilities, but both enjoying life and getting up to run, even when they fall. Perhaps your daughter would enjoy their stories? I saw them earlier this year and was touched:
Sarah – Ran the One Mile Run Race with Cerebral Palsy
http://www.huffingtonpost.com/2014/11/10/teen-cerebral-palsy-runs-sarah-kate-sligh_n_6133348.html
Kayla – A long distance runner with Multiple Sclerosis
http://espn.go.com/video/clip?id=11909407
Great outlook on life! Best wishes!
RL, thank you so much! I have not seen those, so I will certainly be looking at these to see if it might help.
I have a one year old with special needs and I feel I’m so thankful for the time she is unaware to basically get myself together. The challenges have been hard and not what I expected and new ones seem to appear just as we’ve fallen into somewhat of a routine. I fall apart a lot and wonder when things will get easier or when I won’t lose it so easily. I wonder what will happen when I need to be my daughter’s rock steady support and she needs to count on me to give encouraging words. Will I be able to or will they mean nothing when she sees my own anxiety for her? I know every parent probably faces that same question but oh how scared I am that I will fail her. As I said I’m grateful for these first few years that I can become accustomed to these special needs, loving on her and getting to enjoy so many hugs and kisses that aren’t tainted by anxieties of people and the world around her. I pray to have more faith that God will give us both the strength when we need it to be who He wants us to be.
Angela, the first few years can be the hardest, as the parents we are dealing with a diagnosis and we are learning, first hand, what that means to us, our kids, our family. You are slowly becoming an expert on your child. What you are feeling is what many of us have felt before. Keep enjoying the kisses! Now here I will say, my daughter who has cerebral palsy does not like her disability, my daughter who has Down syndrome thinks it’s pretty awesome and does not mind her disability, that might change as she gets older, but for now, she says it with glee in her voice.