God’s Bigger Picture Plan Through My Surgery

 

“Trust in the Lord with all your heart and lean not on your understanding; in all your ways acknowledge Him and He shall make straight your paths.”—Proverbs 3:5-6

Over the years, I will admit that I have been frustrated with God. All the times when I have struggled with people being mean based on my disability, feeling imperfect, and these last six years of chronic pain, I have prayed.

My family and I tried almost every method to treat my chronic pain. I went to doctor after doctor, who all offered possible solutions. Some solutions worked partially, but I was still in a severe amount of pain. I began to ask God what I had done wrong.

When my grandfather died in the midst of my pain, I wondered why God decided to take away the one person who I felt understood my pain. Gradually through my femoral osteotomy recovery, I realized that I hadn’t necessarily done anything wrong; God’s timing and mine were probably different. 

It turned out that having surgery was probably the best solution anyway. The femoral osteotomy surgery would rotate my femur so that my left foot would either be straight or turned outward slightly. None of the medication or other possibilities for relief would have corrected the way I walked. Now because I had surgery, I have a chance to be in less pain and to fall down less.

There were so many times when I cried to God, wondering why I had to handle so much pain. I didn’t feel like I was old enough to deal with it. I worried that I disappointed God somehow or was unfaithful to Him. I didn’t know what else to do. 

I was unsure if I was following the path that God intended for me. Was I being a bad advocate for other people with disabilities? Did I deserve this pain? 

I still don’t understand the reason for my chronic pain, but that’s okay. I am only human. I am not God. God knows what is best for each of us, and humans are not supposed to understand His plan. 

Throughout those rather tough years of chronic pain, I hoped that eventually something would help my legs. I didn’t understand why I had to wait so long. I didn’t understand why nothing worked fully to stop my pain.

Now I have so much more appreciation for God’s plan. Those six years of pain made me stronger. And surgery was not just a solution for my pain; the surgery did not cure my CP, but I didn’t want it to. The surgery will allow me to have a better quality of life.

God had a plan that would fully help me. I just didn’t know it yet. 

The surgery turned my left foot so that my hip won’t slowly slip out of socket. My legs don’t touch anymore when I walk, so hopefully I won’t fall. God used the surgery to help me. Sure enough, God had a plan.

If I hadn’t gone through the pain, I never would have relearned how to walk in a way that is better for my body. I have faith in God in a much deeper way now than I did before. Now I know that God has a plan for me, no matter what.

The Lord truly does work in mysterious ways. I don’t have to understand those ways; I just have to have faith.

My Story Through My Scars

 

I don’t remember when I got my first scar. I was a day old and my stomach had to be stitched because my bowel was perforated. There were some complications when I was born. The bowel perforation most likely led to my having cerebral palsy. I grew up with that first scar and never really questioned it. The area was numb sometimes, but I didn’t really know any different. 

I wasn’t really vain, but I was careful not to wear anything that showed my stomach even though the scar wasn’t noticeable. My second scar came on the inside of my arm. I had an implant put in that regulated my hormones, as the CP may have tampered with that area of my brain. However, the implant was exchanged six times, so I grew very familiar with that scar.

Over time, I’ve had eight or nine surgeries, and this most recent surgery was the most major, with the exception of my first one. The femoral osteotomy gave me eight scars—one for each year I’ve had chronic pain with two to spare. Not all of the bandages have come off yet, but when I saw the first scar from the surgery I was taken aback. It was rather large, and knowing that I had been cut open and stitched back together unnerved me. As I looked at the scar, I had the thought that I needed the scars because my legs were so flawed.

I looked at the rest of my scars in frustration and wondered how my body had gone so wrong. But as I have healed, I realized that my scars aren’t about my flaws—my scars are the way that I have gotten better. 

These scars on my legs make me sad because I hate that surgery was the only option to “fix” me. But my scars have made me stronger. 

The scars hurt. I think that they are ugly. But after all this time, and all this pain, the scars will take that pain away. The scars are a symbol of hope. My scars do not show my suffering; my scars show the overcoming of that suffering.

This surgery is a new beginning for me. The scars on my legs show that I was brave enough to take a chance—even though I don’t know where that chance will lead. I will have a better quality of life because of this surgery, and if that means I will have scars, so be it. 

The scars are hard for me to look at and touch. But what they mean is worth so much more than how they look. The scars mean I am not stuck in pain with no other choice. Though my legs are frustrating, I think they are beautiful—just not on the outside. My legs have held me up for fifteen years even though my bone was rotated. And through the pain throughout those years, I have walked. I have lived my life with legs that needed a little help. And through these scars, my legs got the help they needed—and so did I.

My scars are ugly. I’m not going to say that my scars are beautiful. Rather, what my scars represent is beautiful. I had to be cut open and stitched back together. Those stitches left scars. But those scars mean hope. And with hope and faith, I will walk—no matter how my legs look. My legs are better now, inside and out, not despite the scars but even because of them. 

My scars mean that life gave me an obstacle meant to bring me down—and I didn’t let it. 

Hope For A New Beginning With An Angel By My Side

 

For He shall give His angels charge over you, to keep you in all your ways. In their hands they shall bear you up, lest you dash your foot against a stone. —Psalm 91:11-12

I made it through surgery! I have more hope that I may experience much less chronic pain, and that would be amazing. There is one person especially I wish I could share that hope with. I know he’s watching over me as I go through recovery and come closer to hope, but the one person I thought could understand some of what I was going through—and how valuable that this hope, to combat this pain, really is—isn’t here anymore.

My grandfather and I had a few things in common, including chronic pain. Neither of us were happy that we had the condition, but I always thought my grandfather could somewhat understand what going through daily, debilitating pain felt like. 

Our pain was different. My grandfather was obviously quite a bit older than me, so his pain wasn’t really due to a medical condition but some of what comes with aging. My grandfather had very severe back pain that no one should ever have to deal with. About the time my chronic pain began, my grandfather began to have awful, chronic headaches. 

My grandfather was my inspiration. I always knew him to have back pain, but for a long time I was oblivious to his struggle because I was so young. My grandfather was in severe pain, and he had to have a procedure where the nerves in his back were burned. No matter the pain he was in, my grandfather always managed to muster a smile for me and my sister. My grandfather had so much passion and love for life. When my grandfather developed his headaches, it became more obvious to me that he was in pain, and it was harder for him to do activities. My grandfather’s smile, his laugh, and his huge personality despite his pain was my inspiration especially as my pain started.

My grandfather and I were both put on so many medicines—some worked slightly, some didn’t. A nine-year-old with chronic pain is treated conservatively, but my grandfather was put on so many combinations of medications with high dosages. It got to the point where my grandfather was in severe pain every day, no matter the medicines he took. It was hard for him to get out of bed on some days because the pain was so bad, but no matter what my grandfather was always happy to see us.

Both of us expressed that we wished to take the other’s pain away. My grandparents moved from their large house in Mississippi to a rental house in Central and started building a house behind ours. I started eighth grade and both my grandfather and I were still having chronic pain. The two of us didn’t talk about it excessively, but we always asked each other how our pain was that day and said that we wished we could take on the other’s pain.

Nothing happened the way I expected. For some reason, although I was getting older, I thought that my grandfather and I would both find some miracle medicine that would take our aches and pains away. I was naïve, but I expected our medicines to eventually start working completely and then the two of us could move on with our lives. 

It hurt me more to see my grandpa in pain than it did to be in pain myself, so I was grateful that my grandfather’s pain was relieved first. I just selfishly wish it didn’t happen the way it did.

For a few days, my grandfather was ecstatic that he had no headaches. And then he passed out and was taken to the hospital. After two days, the doctors discovered that my grandfather had internal bleeding and he passed away.

I was devastated. The death of my grandfather was so unexpected. We had gotten so close and he was one of the easiest people to talk to in the world. And now he was gone. 

I struggled with his death. I knew he was in pain, but I didn’t understand why God couldn’t find another way to take his pain. I know Heaven is our eternal reward, but selfishly I wanted my grandfather to be here on Earth with me. I was conflicted because I was so glad my grandfather’s pain was finally gone, but I missed him so much and miss him still. 

And I felt that the rest of my chronic pain journey I would have to face without anyone who understood.

Two years after he died, I am still living with chronic pain, and I just had my femoral osteotomy surgery. I know my grandfather was watching over me. He gives me hope and inspiration daily. During my recovery, I have missed my grandfather especially and I wish he was here to talk to. 

He would be so happy that I finally found hope after all this time. He would be proud that I am trying my best to recover and relearn how to walk. My grandfather is my angel. I am grateful he found his peace. I just wish he was here while I am on the journey to finding mine.

Already, I have seen some success with the surgery. On the first day, lying in the bed in the hospital, my left foot was straight for the first time in my entire life. And when I stood up and took my first steps after surgery, holding onto the walker, my left foot was straight when it never had been before. My grandfather and God blessed me with a little miracle.

My grandfather isn’t here anymore, as much as I wish he was. However, he is with me, and I like to think I have some of his spirit, which inspires me to keep going and never give up. My grandfather will always be my inspiration. And my hope is that, eventually, neither of us will be in pain anymore.

A Letter After Freshman Year To My Younger Self

Dear Younger Self,

Hey, it’s me! How are you doing? I know you won’t believe this right now (it seems so far away for you) but I just finished freshman year of high school! Obviously, I knew I would get to that point eventually, but we’ve had to go through a lot to get here.

I remember eighth grade vividly. It’s not that far back for me at all. Academically, eighth grade was great. But we have always struggled with friendships, Younger Self, and in eighth grade those insecurities raged inside of me even more back then. I had like three close friends in eighth grade. I doubted whether those friendships would last, not because of a lack of loyalty but because of my insecurities.

My legs held me back from making friends. For the longest time, I was scared to be vulnerable and admit that I needed help. I wasn’t exactly closed off, but I kept my mouth shut about my differences unless there was no other choice. But that path is really lonely. I’m sure you know that by now. CP does not define us. CP is a part of us, though, and we don’t have to hide it anymore. There are amazing people out there who have accepted me wholeheartedly, legs and all.

I remember the place you are in your life, Younger Self. I was such a different person before freshman year. I knew what I needed, but I was afraid to take up space. I was hurting and would have continued to bottle up that hurt if I had not learned to advocate for myself. It’s hard and it’s scary and it means you have to let people hear your voice. But there will be people who are willing to listen, I promise. 

I did not belong in eighth grade. I joined academic clubs, but I didn’t find myself there. I didn’t find a sense of home. Home exists outside of the house, Younger Self, but you have to put yourself out there. In eighth grade, I was desperate to play a sport so I could have a team bonding experience. But my legs wouldn’t cooperate. I had friends, but I craved a team—a feeling I really didn’t have a name for. 

Well, I’ve found it. No, it’s not a traditional team. My talented theatre class is what I wanted but never expected—it’s my home away from home. My second family. My friends who understand me. My friends in theatre offer me comfort and acceptance. We joke around but they always offer to help me. My legs don’t deter my theatre friends from wanting to spend time with me. I don’t have to hide my differences; they make me unique. I use my voice in theater—both to act and to speak an opinion or thought—and I am heard. Despite the help I need, my friends see me, not just my legs.

I really have come a long way. In eighth grade, I was still extremely cautious and raw from being bullied in sixth grade. Now, I haven’t forgotten those memories, but I have risen above them. In eighth grade, I felt hopeless, like I’d never escape the pain that lived inside my muscles and joints. I know it probably feels hopeless to you right now, Younger Self, but there is hope. I am so close. The form that this hope comes in is scary, and I would be lying if I told you I am not afraid. But hope to eliminate this pain is not something I had before high school, and I have that hope now.

I know you didn’t expect to change. I never expected that freshman year would be so much better for me. I gained confidence. I experienced healthy friendships. I learned how it feels to belong. Most importantly, I learned to trust. I have hope. I have learned that when life gets tough, I don’t give up. I have learned that humanity is so much more beautiful than I ever gave us credit for.

I don’t have to be ashamed of my legs. I have friends who accept me and my cerebral palsy. It’s okay to ask for help, and I never would have known these things if I wouldn’t have given freshman year a chance.

I am so glad that I met so many amazing friends this year who have a seemingly limitless capacity for kindness. I have seen the best in myself during my first year in high school, and I have seen the best in others.

So yes, Younger Self, starting high school can be scary. But freshman year will be one of the best years of your life so far. You will meet a girl who you consider one of your best friends. You will learn so much about your capacity for strength, and the capacity for kindness in other people that you never realized was possible.

Give freshman year a chance. You will grow into your own person and learn to trust and hope.

Good luck in this next chapter of your life. I’m rooting for you!

Love,

Ainsley (now a sophomore)

Walking Toward The Future (Not Quite The Way I Expected)

 

This is it. This is how I walk. This is my walk—the gait pattern that causes attention to be drawn to my legs, the walk that alerts others to my differences, the walk that is why I am called “crippled”. And gosh, I try to own the way I walk. I can’t control it. There is nothing I can do but accept the way I walk, in the same way I hope for others to accept me. 

I’ll be honest—when I see myself walking, reflected in a mirror or door, I don’t recognize myself. That girl walking in the mirror looks like she hurt herself badly. It looks like she’s walking on broken glass. It looks like she’s about to trip at any second, or that her knees are going to smash together and interrupt the stride of the other leg. And yes, that happens. 

But by now, the way I walk is so normal (for lack of a better term) to me that when I see myself walk, I am shocked. I am taken aback at how painful my walking looks. I go through that pain every day, and the constant turning in of my left foot does cause some breakdown of my hip, and I experience that. I just usually forget how my walking looks. And then I remember how different I am.

I have walked the same way for about thirteen years now (I learned to walk when I was two and a half). My gait pattern basically goes like this: due to the spasticity of my hamstrings—especially the left—my left foot turns in. My right foot lifts and turns so I’m walking on the side of my right foot. My right knee bends toward the left leg, so close that my right knee almost touches the top of my left hamstring. My left foot is rotated inward, so it cuts under the right foot and causes me to fall down. 

The way I walk feels more awkward on some days more than others. It looks— well, it looks obvious. The way my walking looks is not as important to me as the long-term effect on my body. Right now, my left hip is not dislocated, but it is very slowly loosening from the socket. The way I walk has caused me to have chronic pain—mostly in my left hip—for six years now.

But the way I walk doesn’t have to be painful.

I am a week and two days away from surgery. Surgery is the logical next step toward helping my chronic pain. In the long-term, hopefully the surgery will improve my mobility. My spasticity does cause some wear-and-tear on my joints and muscles, but the surgery will shift the positions of my bones so that I will walk differently. I hope that the difference in gait pattern will take some pressure off.

The surgery is called a derotational femoral osteotomy. The surgeon will cut into my left hip to access the femur and rotate it because my femur is rotated the wrong way. (Not only do my bones grow, but because I have cerebral palsy, my bones rotate as they grow.) 

The surgeon also plans to lengthen my abductors and hamstrings. The lengthening of the abductors will pull my legs apart so the right leg doesn’t hit the left leg as I walk. The left leg shouldn’t turn inward as much because the abductors wouldn’t be as contracted. Contracture means that the muscle shortens, which should be avoided if my abductors are lengthened. 

Because my left foot will (hopefully) face the right way after surgery, my left hip will be straightened, and the theory is that my chronic hip pain should lessen. I am tired of hurting when I walk. If this surgery grants me relief, I will be grateful. 

I have found myself wondering, Will I still look like I have CP after surgery? To clarify, I don’t dislike looking like I have CP. The reality is, I do have CP, and I have to accept it. Actually, sometimes it’s easier in a way if I look like I have trouble walking. If my disability is slightly more visible, people don’t deny me help. For me, because my cerebral palsy is so mild, I struggle with where I fit in, and people do not always believe that I have a disability. I also wonder if I will be called “crippled” anymore. Maybe people won’t notice that I walk differently after this surgery. If this derotational osteotomy improves my gait, that would be wonderful, but I do worry what will happen if I no longer show any signs of having CP at all. 

Identity has become a bit of a blurred concept lately, and by saying that my intention is not to be political but to demonstrate that I view CP as a part of my identity. CP is a part of me. I know surgery won’t take CP away, but I worry a bit about how my relationship with my legs will change. I don’t really remember a time without chronic pain, and it will be a bit nerve-wracking to delve into the unknown, but that unknown will offer me a much better quality of life. 

Six years ago, I never imagined I’d come so far in my journey with chronic pain. I thought the pain was a growth spurt. How wrong I was. Over my journey, I have learned that I can handle challenges in addition to CP. I learned that even when the circumstances seem hopeless, I don’t give up.

I’ve gone through a lot in these past six years. There have been many joys and triumphs, and I have done it all with chronic pain. As the years went on and the pain continued with no answer, I was convinced I would live the rest of my life this way—in pain, dreading taking a step. But this surgery is my chance. My family and I have explored every alternative the doctors have thrown at us, and surgery is the last option. 

This surgery can give me a chance to do so much. It can improve my life; it can change my life. I just have to be brave enough to go through it.

I won’t be alone, I know that. My family is with me and so is God. This is God’s plan. I trust God, but that doesn’t necessarily mean His plan doesn’t scare me. I don’t know what God’s plan for my life is. I always thought that Gods plan for me was to be an advocate for other people with disabilities, but this surgery has taken my life in a direction I didn’t expect.

A while ago, I posted about reflection and how others see us. My hope is that the way I see myself (body image) can improve after this surgery. Mostly, I am okay with how I look when I walk, but I do have my moments when I struggle with body image. But I have to remember that getting this osteotomy does not mean that I need to be fixed. I am flawed. But God made my legs the way He did for a reason, and the surgery will help me and my legs reach my full potential. 

This surgery scares me. It frustrates me that in order to stop the chronic pain, I have to go through a summer of intense pain and therapy. But if it’s what I have to do, I’ll do it. The rest of my life is worth it. I know I try to advocate for people with CP and I try to have a positive outlook, but that does not mean I’m perfect. I am so hopeful that this surgery will work. But I am scared of the unknowns.

No matter what, I will undergo surgery. I will walk toward a brighter future, regardless of what that looks like for me. I am in God’s hands now. 

The Peter Pan Phenomenon vs. Time vs. Me

 

“It’s supposed to hurt; that’s how you know it means something!” —Molly Aster, Peter and The Starcatcher

The curtain is falling on this school year. I’ve never struggled with an ending this much before. The play my theater class and I performed meant so much to me—it was the most fun I’ve ever had performing a play, but other than that, Peter and The Starcatcher proved a lot to me. Over this year—while rehearsing for Peter and after—I have learned that it’s okay to be vulnerable and accept help from my classmates. I have rediscovered my passion for theater, which was hidden under cliques and drama. I have learned how to be myself with my friends.

I have learned to be myself, not even despite my legs. No, I have stopped hiding my difficulties in theater. I have been accepted wholeheartedly. 

I only have about two weeks of ninth grade left. The seniors—who have become some of my closest friends this year and were some of the first to accept me with no hesitation—have about three days of high school left. And I’m struggling. I really am. 

I don’t know what to do. I don’t want to lose touch with my friends, including the seniors. My theater friends’ acceptance helped me find myself, and by losing touch with them, I might lose part of myself. Being with my friends in theater has given me faith that I don’t have to hide my legs in order to have meaningful relationships. My friendships in theater are so valuable to me, and I honestly don’t know what I will do without my friends this summer. 

My friends in theater are some of my best friends. Because of the seniors’ acceptance of me, I am no longer jaded toward older kids. I don’t have to worry about my theater friends being mean, or resenting me for what I can’t do. None of the seniors, especially—and one of my best friends who I now eat lunch with sometimes—ever hesitate to help me. One boy always makes sure I make it on and off the stairs okay, and everyone always offers me a hand. 

So what does any of this have to do with Peter Pan? Well, Peter Pan is the boy who will never grow up. He was an orphan who wished to “just be a boy for a while”, and so he is. But “a while” turned out to be a very long time. 

Right now, I want time to stop. I want to keep going to theater and seeing my friends and giving them hugs. I don’t want our friendships to change over the summer. Some of my friends are moving on. They are growing up. But I want our friendships to stay the same. 

Because over the summer, I won’t be doing cool activities or moving on or any of that normal high school summer experience. No, this summer I will be going to physical therapy four times a week, relearning how to walk, and I worry that all of my friends will move on without me.

I won’t be able to walk for most of the summer. I will have to use a wheelchair or walker. I will literally be relearning how to walk because my bones will be positioned differently. And I know that it will hopefully lessen my pain, and I don’t want to be stuck in chronic pain for the rest of my life. But I just want to be a girl with stable friendships, a girl whose friends won’t leave her behind. 

I don’t want to be fighting against my legs this summer. I want to hang out with my theater friends, who already accept me the way I am, and be sure that our friendships won’t change. Time really is the enemy for me right now. If I could move on this summer, maybe I would feel differently. But I will be literally and figuratively stuck, and I am desperate to keep my friendships the way they are.

I know that’s not healthy. I know change is good. I know that this surgery coming up will benefit me. I know that I will be okay when the seniors leave even though it will be hard, and even though saying goodbye will hurt.

Because the show Peter and The Starcatcher, this school year, learning how to truly be myself in theater and with my friends—it all means something. It means everything. I am scared. I am scared that my legs will change—even though it will hopefully be a good change—and I won’t recognize myself. I’m scared that my friendships will fade this summer as I try to recover physically. But mentally, I don’t think I could recover from losing my friendships with my theater friends. I am scared. But I don’t have to fear time. I have faith in my friendships. I have faith in God.

But if time stopped, none of it would mean as much. I wouldn’t get to discover a possible future without chronic pain. I wouldn’t be able to understand myself and that it is possible for my friends to accept me and my legs. I have learned so many lessons this year. Maybe another lesson I can learn is not to be so afraid of change.

My friendships will probably change. But that doesn’t have to be bad. My friends will be entering new phases in their lives, but if our friendships are as strong as I think they are, my friendships won’t fade. I think Peter Pan had a point. But there is so much I would miss out on if time stopped, and that is a risk I am not willing to take. Time doesn’t have to be my enemy. I will make it through. My friends and I will make it through, even if I don’t quite know how to move on yet. I have time to figure it out. 

(So I guess this is a thank you to all of my theater friends. You know who you are. Hopefully, you know how valuable your friendships are to me. I have been struggling lately, worrying that my friendships with you all will disappear. I guess whatever is meant to happen will happen, because God has a plan for us all. So, thank you for this year. Thank you for helping me understand that acceptance is possible. Thank you for your help, and I love being friends with you all. Good luck in the next chapter!!)

The Countdown To Unknown

 Today has really been a wake-up call for me. Today marks exactly one month until my surgery (a derotational femoral osteotomy). This surgery may have been the solution in disguise that we’ve been hoping for, I really don’t know. All I can really hold onto is hope. 

As I write this, I am in pain. I have been in chronic pain for six years now. These past six years have been full of amazing triumphs and joys, but through it all—six years of my life—have been taken up by chronic pain. I’m tired. I’m fourteen, almost fifteen. I move like an old lady. I don’t want this pain holding me back anymore.

I’m not naïve; I know this surgery won’t take away my cerebral palsy. I wouldn’t want it to anyway. I just want less painful mobility. I want to move around in a slightly crowded room or walking in the hallway and not to have to worry about falling down. I don’t know if that’s too much to hope for.

If this stabbing, shooting, throbbing, aching pain goes away, that’s my main goal. This is the last stone I see to overturn, and I’m not sure what’s hidden under that stone yet. 

I’m so hopeful for what my surgery might change, but it makes me sad as well. Dealing with pain has become a part of me. Will everything I’ve gone through with this pain not matter anymore if the pain goes away? Will I still look like I have CP? Will people judge me differently?

There is so much I don’t know. I am nervous. Surgery will happen the summer before my sophomore year, and I want to be healed before I go back to school. In 10th grade, I want to be able to do the things that my pain prevented me from doing before. 

Recovery will take all summer, during which I’ll undergo physical therapy three to four times a week. I sound so clinical right now, but I am so nervous. I have been through surgery before, but my rheumatologist told me recently that I feel pain more deeply than most people and that recovery might be more challenging for me. 

I know losing some of the physical strength I have gained over the years is temporary, but it scares me. I like to be as independent as possible. Without the little independence I have, I feel depressed. I don’t want to lose touch with my friends because I’m stuck at home recovering and can’t do much.

I am so hopeful of what I may gain by having surgery, but I can’t help being scared of what I might lose. And it only happens in a month….