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Happy National CP Awareness Day! 💚

Today, March 25, is National CP Awareness Day! I hope everyone has an amazing day & can acknowledge their own strength in the obstacles they are facing. To everyone who has CP, I’m here for you and you are not alone. Let’s spread awareness of all the beautiful things Cerebral Palsy can be.
Happy CP Awareness Day! 💚

#CerebralPalsy #Spasticity

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Trusting My Choice—and my Legs—After My Femoral Osteotomy Surgery

I had to make a choice this summer. My choice was this: be in pain indefinitely or have orthopedic surgery. You can probably guess which one I chose.
I didn’t consider surgery a particularly fair choice, but one thing I have learned in my life is that life can be both beautiful and unpredictable—and unfair. Life isn’t fair. Spending the summer recovering isn’t fair.

I can acknowledge all of that, but then I have to move on. The surgery was logically my only option. It was the opportunity God gave me, and I felt I had to take it.

I was put to sleep for three hours and when I woke up, my legs were different.

I was unnerved. I had a rod and screws in my leg and my femur—the biggest, longest bone in the body—was broken, albeit intentionally. For more than fourteen years, my femur caused my leg to turn the wrong way. Now it was like I had a new start.

As I lay in the hospital bed, my mom pointed out that my feet were turned outward for the first time. I think she almost cried. I might have cried, too, but I was too loopy. The outward rotation of my left foot, specifically, meant that my hips had less pressure, which was one of the goals of the surgery.

Since the surgery, I have had many ups and downs. I had been home from the hospital for two days when I started having chills and constant spasms. My parents helped me to my bed and I eventually fell asleep. Generally, sleeping after the surgery has been hard. I never found it easy to fall asleep to begin with, but after surgery, the pain and spasms kept me awake. I slept during the day because the medicine was very strong and made me drowsy. The pain would move from my hip, settle in my femur, and travel to my shin. Despite the pain, I had some amazing accomplishments after surgery, too.

The day after my femoral osteotomy, I started using a walker. I noticed that as I walked, my left foot would either straighten or turn outward, not inward like it used to. The lengthening of my abductors helped to drastically widen my stance as I walked. I had walked the same way for years—knees bent, left foot inward, narrow stance. Now I wouldn’t trip myself up because of my rotated femur and lengthened abductors. I thought that was amazing!

However, for the first few weeks of my recovery, my left knee refused to bend. I couldn’t tell that my knee wasn’t bending but found out when I began intensive physical therapy. I also couldn’t determine the direction of my feet—whether they were turned in or out, or straight. The natural way my left foot was for so long was turned inward. Gradually, I guess my body was trained that my left foot’s crookedness was actually straight. My inability to determine the direction of my limbs is neurological. My physical therapists hope this will get better as I continue to relearn how to walk.

The loss of independence that the surgery caused has been really difficult for me, even though it’s temporary. I can’t walk for long periods of time. The surgery and sharp femur pain wiped out my stamina and endurance. School starts in three weeks, and I’m not sure if I will be able to go to school without an aide or pull my roller bag by myself.

I don’t trust myself anymore. When I walk, I feel like I’m losing control—going too fast, locking my knees, hyperextending. I’m constantly paranoid that the rod slipped out of place and that my left foot is turning in. It’s exhausting, and I often wonder if I will ever trust my legs. I wish that the muscles in my legs would learn to work together soon.

I never really had control of my left leg before. It often felt like my left leg would cave in on me. And even back then, my right leg had to support most of my weight. My struggles with my left leg are not my body’s fault. But my left leg has never really felt like it’s mine. Now, especially, my leg feels like it belongs to someone else.

When all the bandages came off of my incisions, I remember sitting in the bathtub one night, tracing a few of the scars. I was thinking that I’d had chronic pain in my hip, especially the left, for so long, and now I had a visual representation. I looked at all the scars and felt, honestly, that my legs were so flawed. That had to be why I’d needed so much surgery. I looked at my left leg and thought that it was so ugly, inside and out. In reality, my left leg was doing the best it could, using the muscles that had the least amount of spasticity. My left leg has the help it needed now.

The pain has been severe and intense since I’ve had surgery. My physical therapist has pushed me to achieve what I can, and I’m so grateful for his help. However, there were some times I had some emotions to let out during PT appointments. During one appointment, he laid me on my stomach and pushed on my quadricep. I nearly cried. I struggle with telling my physical therapist that I’m in pain because I feel like I’m complaining. Throughout my recovery experience, I have had to learn to ask for help.

I have had to use a wheelchair to go to appointments with my doctors and to physical therapy. It is emotionally draining, even though my use of a wheelchair is temporary. I feel like everyone stares at me. I am too short to see much of anything when I sit in the wheelchair. My legs stiffen and it is very painful to sit in the wheelchair for an extended amount of time. Overall, much of my recovery process has been emotional, in good ways and bad.

I have thought so many times during this surgery that one type of pain was swapped for another. My chronic pain was replaced by a new bone-deep, intense pain. I wasn’t sleeping well. I was struggling to walk. At night, I was exhausted. I knew the surgery had benefits. So that’s what I’ve tried to focus on.

A few weeks after my surgery, I was able to stand up from a chair without using my hands—something I couldn’t do even before the surgery. I was shocked and so, so happy. It was emotional for me. My eyes welled up and I smiled at myself in the mirror. I had never done something like this before. As I did it again, I think that’s when I fully realized that the surgery was worth it. The action was so unnatural and new that I kind of wondered if my legs belonged to a stranger.

On the stairs, my feet don’t turn in anymore. My feet would dramatically turn inward, which was a major fall risk. My physical therapist told me in the past that my feet would never be straight while climbing stairs. He thought it was impossible. My femoral osteotomy helped me achieve something that was impossible for me.

I use more muscles than I did before. There is a muscle near my shin that has been activated lately. A few days ago I told my mom that my shin was hurting, but that it wasn’t a shin splint. Turns out, I had started to use a muscle that I had never used before called the anterior tibia. I was stunned. It took me my entire life to start to use one of the muscles in my body. Because I always dragged my left foot, the muscle that lifts the foot from the ground during a gait pattern had never been used. I felt like I had just discovered that more was wrong with me than I ever realized, but then I reflected that the surgery has given me a chance to do things I never could before.

So yes, the pain of a femoral osteotomy is miserable at times. Yes, I can’t really trust my legs yet and have to relearn how to walk. But having surgery has shown me so many small miracles. My legs finally have the help they need. I can do so many things that aren’t impossible anymore.

#CerebralPalsy #Recovery

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Why The “Label” of Cerebral Palsy Matters

I have spastic diplegic cerebral palsy. It is very mild, meaning that I can walk without assistance except on uneven surfaces (curbs, stairs, etc.) and I can perform most fine motor skills but need extra time to do so as with cutting and tying my shoes. My left leg is more affected than my right, and I have the most spasticity in my hamstrings, adductors, and my calf muscles.

Oftentimes, I feel like I belong in two different worlds—the disability community, and the world of those who have no mobility struggles. I can’t completely relate to either world, which has presented some difficulties.
In school, I am in advanced classes, which throws the teachers for a loop. Because I have cerebral palsy, they expect different things from me automatically, which isn’t fair and shouldn’t be true, but that’s the way it is. Everyone else in my classes needs no help moving around, and do not take extra time to get to class. I stick out by default, which I’m used to, but it isn’t always easy.
I found out I had cerebral palsy in the third grade, when I was eight. I was diagnosed with CP when I was 14 months old. Before my parents told me that I had cerebral palsy, I was convinced that everyone else had the same difficulties moving around, but that I was just worse at adjusting to the difficulty level. When I was much younger, I had to do occupational therapy, where I would meet other kids, some of whom relied on wheelchairs. Because I have never needed a wheelchair, and my cerebral palsy is much less visible, I never thought I had a disability. I just thought something was “wrong” with me, and everyone else had the same challenge walking—but that others were better at hiding it.
Though it was difficult for me when I was told that I had CP, I was also relieved. The label meant that there was a reason why I struggled, and I was grateful to finally know why I was different. It has been confusing at times, and hard to tell other people about my diagnosis when necessary, but most of all, having the “label” of cerebral palsy means that I am not alone.
When my parents had the conversation with me about my diagnosis, they were confused why I was crying. The information was overwhelming and hard to take in, like is that really my body you’re talking about?! but the main feeling I experienced was relief.
“Why are you crying?” my dad had asked me. “It’s not like anything changed. You’re the same as you were before you knew you had CP.”
He was right to some extent—I had had cerebral palsy my entire life. I was the same person. But in my mind, so many things had changed. I wasn’t just “messed up” or “defective” or any of the awful words I’d thought about myself. No, I had a community now. There were others like me, other people who had very mild CP, other girls who were going through the same challenges that I was.
My parents read me Amelia Hall’s outstanding article “If I Could Talk To My Younger Self Growing Up With Cerebral Palsy” and it brought me so much comfort. There were other kids who had cerebral palsy and who had gotten bullied, other kids who hated recess just like I did, other kids who were self-conscious and who wanted nothing but acceptance, friendship, and to be “normal”.
Several years later, I joined The Mighty and was so happy to find that there were indeed others like me. I’ve found my place in the world—the space where it’s okay to not know everything about who you are, the space where you have things in common with others but you’re not the same. Because I don’t know everything about who I am. And no, unlike my teacher once assumed, I don’t know everything about cerebral palsy just because I have it. No case of CP is the same. I found out I had CP later in my childhood, and I’m still learning new things about it now.
Having the diagnosis of CP does not necessarily change anything about me—but it does change how I feel about myself. I’m not the only one going through some challenges. I’m not the only one who has mild cerebral palsy anymore.
I am no longer alone in what I’m facing.

#CerebralPalsy #MightyTogether

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It’s Okay To Grieve Having Chronic Pain

Life moves at a very fast pace. As someone with cerebral palsy and chronic pain, I know that all too well. I try my best to keep up with others because I am determined, but often that means pushing things down—the pain and emotions.

Mostly, my chronic pain is in my hips (near the bursa sac for the more medically-minded people). I have had it for almost seven years now, which feels like a very long time. Because my pain doesn’t really change, I tend to believe that it is pointless to complain. I’ll always have the same thing to say: “I’m hurting.” I try to keep going and ignore how I really feel about what is happening to my body.
You never really get used to chronic pain, regardless of how long you’ve had it. Because it is my new normal, I try to adapt to it. Spoiler alert: In my mind, “adapting” to the pain means trying to pretend it isn’t there. Does that ever work? No.

The pain in my hips is aching at best, debilitating at worst. However, as long as my organs were intact and my joints weren’t wearing down, I told myself I could handle it. My legs have always been the part of my body that I’ve gotten used to not being the way I wish they were. Hip pain is just a very painful reminder of that.
Two weeks ago, though, the fingers on my right hand turned bright red and began to swell. Soon it hurt to bend my fingers. Typing quickly was a struggle. Opening things got harder. Buttoning my uniform shirt made me wince in pain.

I do so much with my hands, and the soon undeniable fact that I was losing functionality made me mad and desperate. I don’t have an answer to why I have chronic hip pain. I couldn’t stand it if I never got an answer for the pain in my hands.

Then I went to my hydrotherapy appointment. Hydrotherapy is a form of swimming therapy that works well because you don’t have to bear as much weight in the water. Everything is looser. I move so much more easily in the water, and as a result I can usually ignore my pain for the time being.
Not that day. I was at a breaking point. My fingers were swollen and aching, I’d had to type and write a lot, and the hip pain that stayed with me was relentless.

“I’m so tired of being in pain all the time,” I admitted in a rare moment of exasperation and utter exhaustion. “It’s really, really hard.”
I shut my mouth, feeling horrible that I was complaining to the person who was trying to help me feel better.
“I’m sorry,” I apologized. “Now I’m complaining to you.”

My PT swam alongside me and said the words I’d needed to hear for years: “Don’t apologize for complaining to me. I need to know if you’re in pain. You can’t bottle that kind of emotion up; it needs to go somewhere. Talk to me, talk to anyone. I don’t understand your pain completely, but I know it’s hard.”

Such relief coursed through me in that moment. I was so tired of saying “I’m fine” when I wasn’t, forcing a smile when I wanted to scream that I wasn’t supposed to feel so old and my legs were betraying me.
I grieve that I have chronic pain. I skipped right over the denial stage; pain like this is hard to deny. I waver between anger, sadness, and acceptance.

Chronic pain is called “chronic” for a reason—it doesn’t go away. So really, I have no other choice but to accept my pain.

Still, I miss the person I was before my leg pain took over, although I don’t remember who she was. Someone who was a lot less irritated, probably. The person I was before could do more, just because I didn’t have so much pain inside me. I miss that girl. I want her back.
I miss walking around and feeling spasticity, but no aches. I miss being able to tell my family that I wasn’t hurting and meaning it. I miss being carefree about a diagnosis. Now I care because I want answers.

I’m angry because I don’t want to be in pain for the rest of my life. I’m sad because of what I’ve missed out on. I am, at least, relieved that I don’t have to bottle this up anymore. It’s okay to grieve having chronic pain. I’ve heard the old adage “You either laugh or you cry”. It is healthy to laugh at times, but it’s okay to cry sometimes, too.

#ChronicPain #Grief #CerebralPalsy #CheckInWithMe

(edited)
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Middle-Grade Books Featuring Characters Who Have Cerebral Palsy

YA books are great, but people need representation at every stage in life. Not only every stage of life, but in all walks of life. Cerebral palsy is one of the most common motor disabilities in childhood, but it is often ignored in children’s literature. So here is a list of middle-grade books about CP:

1.”Out of My Mind” by Sharon M. Draper
Melody is not like most people. She cannot walk or talk, but she has a photographic memory; she can remember every detail of everything she has ever experienced. She is smarter than most of the adults who try to diagnose her and smarter than her classmates in her integrated classroom—the very same classmates who dismiss her as mentally challenged because she cannot tell them otherwise. But Melody refuses to be defined by cerebral palsy. And she's determined to let everyone know it—somehow.

2.”Out Of My Heart” by Sharon M. Draper
Melody faces her fears to follow her passion in this sequel to “Out of My Mind”. Melody is a year older, and a year braver. And now with her Medi-talker, she feels nothing’s out of her reach, not even summer camp. There have to be camps for differently-abled kids like her, and she’s going to sleuth one out. A place where she can trek through a forest, fly on a zip line, and even ride on a horse! A place where maybe she really can finally make a real friend, make her own decisions, and even do things on her own—the dream! By the light of flickering campfires and the power of thunderstorms, through the terror of unexpected creatures in cabins and the first sparkle of a crush, Melody’s about to discover how brave and strong she really is.

3.”Roll With It” by Jamie Sumner
The story of an irrepressible girl with cerebral palsy whose life takes an unexpected turn when she moves to a new town. Ellie’s a girl who tells it like it is. That surprises some people, who see a kid in a wheelchair and think she’s going to be all sunshine and cuddles. The thing is, Ellie has big dreams: She might be eating Stouffer’s for dinner, but one day she’s going to be a professional baker. If she’s not writing fan letters to her favorite celebrity chefs, she’s practicing recipes on her well-meaning, if overworked, mother. But when Ellie and her mom move so they can help take care of her ailing grandpa, Ellie has to start all over again in a new town at a new school. Except she’s not just the new kid—she’s the new kid in the wheelchair who lives in the trailer park on the wrong side of town. It all feels like one challenge too many, until Ellie starts to make her first-ever friends. Now she just has to convince her mom that this town might just be the best thing that ever happened to them!

4.”Time To Roll” by Jamie Sumner
In the eagerly anticipated sequel to Jamie Sumner’s acclaimed and beloved middle grade novel “Roll with It”, Ellie finds her own way to shine. Ellie is so not the pageant type. They’re Coralee’s thing, and Ellie is happy to let her talented friend shine in the spotlight. But what’s she supposed to do when Coralee asks her to enter a beauty pageant, and their other best friend, Bert, volunteers to be their manager? Then again, how else is she going to get through this summer with her dad, who barely knows her, while her mom is off on her honeymoon with Ellie’s amazing gym teacher? Ellie decides she has nothing to lose. There’s only one the director of the pageant seems determined to put Ellie and her wheelchair front and center. So it’s up to Ellie to figure out a way to do it on her own terms and make sure her friendships don’t fall apart along the way. Through it all, from thrift store deep dives to disastrous dance routines, she begins to form her own definition of beauty and what it means to really be seen.

*Unfortunately, I could not find a middle-grade novel about a character who has ambulatory cerebral palsy.*

📚 Happy reading! 💚

#themightyreaders #CerebralPalsy #Spasticity #Disability

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Middle-Grade Books Featuring Characters With Cerebral Palsy

YA books are great, but people need representation at every stage in life. Not only every stage of life, but in all walks of life. Cerebral palsy is one of the most common motor disabilities in childhood, but it is often ignored in children’s literature. So here is a list of middle-grade books about CP:

1.”Out of My Mind” by Sharon M. Draper

Melody is not like most people. She cannot walk or talk, but she has a photographic memory; she can remember every detail of everything she has ever experienced. She is smarter than most of the adults who try to diagnose her and smarter than her classmates in her integrated classroom—the very same classmates who dismiss her as mentally challenged because she cannot tell them otherwise. But Melody refuses to be defined by cerebral palsy. And she's determined to let everyone know it—somehow.

2.”Out Of My Heart” by Sharon M. Draper

Melody faces her fears to follow her passion in this sequel to “Out of My Mind”. Melody is a year older, and a year braver. And now with her Medi-talker, she feels nothing’s out of her reach, not even summer camp. There have to be camps for differently-abled kids like her, and she’s going to sleuth one out. A place where she can trek through a forest, fly on a zip line, and even ride on a horse! A place where maybe she really can finally make a real friend, make her own decisions, and even do things on her own—the dream! By the light of flickering campfires and the power of thunderstorms, through the terror of unexpected creatures in cabins and the first sparkle of a crush, Melody’s about to discover how brave and strong she really is.

3.”Roll With It” by Jamie Sumner

The story of an irrepressible girl with cerebral palsy whose life takes an unexpected turn when she moves to a new town. Ellie’s a girl who tells it like it is. That surprises some people, who see a kid in a wheelchair and think she’s going to be all sunshine and cuddles. The thing is, Ellie has big dreams: She might be eating Stouffer’s for dinner, but one day she’s going to be a professional baker. If she’s not writing fan letters to her favorite celebrity chefs, she’s practicing recipes on her well-meaning, if overworked, mother. But when Ellie and her mom move so they can help take care of her ailing grandpa, Ellie has to start all over again in a new town at a new school. Except she’s not just the new kid—she’s the new kid in the wheelchair who lives in the trailer park on the wrong side of town. It all feels like one challenge too many, until Ellie starts to make her first-ever friends. Now she just has to convince her mom that this town might just be the best thing that ever happened to them!

4.”Time To Roll” by Jamie Sumner

In the eagerly anticipated sequel to Jamie Sumner’s acclaimed and beloved middle grade novel “Roll with It”, Ellie finds her own way to shine. Ellie is so not the pageant type. They’re Coralee’s thing, and Ellie is happy to let her talented friend shine in the spotlight. But what’s she supposed to do when Coralee asks her to enter a beauty pageant, and their other best friend, Bert, volunteers to be their manager? Then again, how else is she going to get through this summer with her dad, who barely knows her, while her mom is off on her honeymoon with Ellie’s amazing gym teacher? Ellie decides she has nothing to lose. There’s only one the director of the pageant seems determined to put Ellie and her wheelchair front and center. So it’s up to Ellie to figure out a way to do it on her own terms and make sure her friendships don’t fall apart along the way. Through it all, from thrift store deep dives to disastrous dance routines, she begins to form her own definition of beauty and what it means to really be seen.

*Unfortunately, I could not find a middle-grade novel about a character who has ambulatory cerebral palsy.*

📚 Happy reading! 💚

#themightyreaders #CerebralPalsy #Spasticity #Disability

2 reactions
Post

4 Middle Grade Books With Characters Who Have Cerebral Palsy

YA books are great, but people need representation at every stage in life. Not only every stage of life, but in all walks of life. Cerebral palsy is one of the most common motor disabilities in childhood, but it is often ignored in children’s literature. So here is a list of middle-grade books about CP:

1.”Out of My Mind” by Sharon M. Draper

Melody is not like most people. She cannot walk or talk, but she has a photographic memory; she can remember every detail of everything she has ever experienced. She is smarter than most of the adults who try to diagnose her and smarter than her classmates in her integrated classroom—the very same classmates who dismiss her as mentally challenged because she cannot tell them otherwise. But Melody refuses to be defined by cerebral palsy. And she's determined to let everyone know it—somehow.

2.”Out Of My Heart” by Sharon M. Draper

Melody faces her fears to follow her passion in this sequel to “Out of My Mind”. Melody is a year older, and a year braver. And now with her Medi-talker, she feels nothing’s out of her reach, not even summer camp. There have to be camps for differently-abled kids like her, and she’s going to sleuth one out. A place where she can trek through a forest, fly on a zip line, and even ride on a horse! A place where maybe she really can finally make a real friend, make her own decisions, and even do things on her own—the dream! By the light of flickering campfires and the power of thunderstorms, through the terror of unexpected creatures in cabins and the first sparkle of a crush, Melody’s about to discover how brave and strong she really is.

3.”Roll With It” by Jamie Sumner

The story of an irrepressible girl with cerebral palsy whose life takes an unexpected turn when she moves to a new town. Ellie’s a girl who tells it like it is. That surprises some people, who see a kid in a wheelchair and think she’s going to be all sunshine and cuddles. The thing is, Ellie has big dreams: She might be eating Stouffer’s for dinner, but one day she’s going to be a professional baker. If she’s not writing fan letters to her favorite celebrity chefs, she’s practicing recipes on her well-meaning, if overworked, mother. But when Ellie and her mom move so they can help take care of her ailing grandpa, Ellie has to start all over again in a new town at a new school. Except she’s not just the new kid—she’s the new kid in the wheelchair who lives in the trailer park on the wrong side of town. It all feels like one challenge too many, until Ellie starts to make her first-ever friends. Now she just has to convince her mom that this town might just be the best thing that ever happened to them!

4.”Time To Roll” by Jamie Sumner

In the eagerly anticipated sequel to Jamie Sumner’s acclaimed and beloved middle grade novel “Roll with It”, Ellie finds her own way to shine. Ellie is so not the pageant type. They’re Coralee’s thing, and Ellie is happy to let her talented friend shine in the spotlight. But what’s she supposed to do when Coralee asks her to enter a beauty pageant, and their other best friend, Bert, volunteers to be their manager? Then again, how else is she going to get through this summer with her dad, who barely knows her, while her mom is off on her honeymoon with Ellie’s amazing gym teacher? Ellie decides she has nothing to lose. There’s only one the director of the pageant seems determined to put Ellie and her wheelchair front and center. So it’s up to Ellie to figure out a way to do it on her own terms and make sure her friendships don’t fall apart along the way. Through it all, from thrift store deep dives to disastrous dance routines, she begins to form her own definition of beauty and what it means to really be seen.

*Unfortunately, I could not find a middle-grade novel about a character who has ambulatory cerebral palsy.*

📚 Happy reading! 💚

#themightyreaders #CerebralPalsy #Spasticity #Disability

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Dealing with more pain and frustation about worsening of symptoms

The last few months I've been noticing some great increase in spasticity and my general pain level. So I've talked with my doctor and medical team (after silently struggling with it for over 2 months). We've tried physical therapy, orthopedic shoes, higher doses of botox (also in my legs). Right now I'm on a low dose of baclofen.

My doctor is worried because I rarely vocalize being in a lot of pain and wants to up my baclofen dose.

And I'm kind of mentally and most of all physically struggling with the worsening spasticity and pain. I have mild CP and never struggled with spasticity to this extend (or it was well managed).

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