Tag: Cerebral Palsy

Pregnancy With a Disability: A Series

Amelia Hall # # # #

I have wanted to experience pregnancy and motherhood for as long as I can remember, but due to Cerebral Palsy, a physical disability that affects my muscle control, I was unsure whether it would be possible. When I found out I was pregnant in December 2020, I was equal parts ecstatic and terrified, which are two very common emotions when women first learn they are expecting. For me, though, there was an undercurrent of “Can I really do this?,” “What barriers will my disability cause?” and “How will my pregnancy be different than able-bodied moms?”

Not surprisingly, there is very limited research on Cerebral Palsy and pregnancy. Prior to getting pregnant, my OB-GYN and I talked extensively about how my disability could complicate things. The main point she brought up to me was being unsure whether I’d have the capability to deliver vaginally due to the spasticity I experience as a result of my Cerebral Palsy. Therefore, she referred me to a Maternal Fetal Medicine Specialist to get some answers based on my specific circumstances.

At my Maternal Fetal Medicine appointment, I was asked to talk about my Cerebral Palsy and how it impacts me on a daily basis. I discussed my spasticity, the fact that my CP primarily impacts my hips and legs, and my lengthy surgical history. The first doctor I spoke with (we’ll call her Abigail) had done some research on modes of delivery for CP pregnancies. As it turns out, the most recent study available was from 1992, the year I was born. The research highlighted that those with Cerebral Palsy who had undergone surgeries on their lower extremities as children were more likely to require a C-section than those that did not….aka women like me. This wasn’t a shock to me, but I think a small part of me had hoped that vaginal delivery was an option. The next part of the appointment involved an exam to assess the range of motion in my hips and legs. I knew without even attempting to get into the positions they asked that my body wasn’t going to cooperate. Ever since I had reached the age for pelvic exams, I had never been able to put my feet in the stirrups at the doctor’s office due to the limited mobility in my legs and hips. However, not wanting to leave any stone unturned, I tried anyway.

As expected, the mobility wasn’t there. Abigail then informed me she wanted to bring in her boss to get her opinion as well. “The more, the merrier,” I remember saying. Abigail smiled and went to get her colleague, Danielle. Once both doctors returned, I was asked some of the same questions as before, but these were focused specifically on the surgeries I had as a child. Danielle happened to be the head of the high risk pregnancy department. I felt like I was getting special treatment or that something was very wrong. Thankfully, neither were true. She then informed me that she had no one in her department with knowledge on pregnancy and Cerebral Palsy. Instantly, my hope dissipated. But then, Danielle’s phone rang. “I’ve got a specialist on speed dial,” she said, before leaving the room. She came back in a few minutes later, and the call was on speaker phone. Daniel informed me, “My daughter, Lexie, is a pediatric orthopedic surgeon. She has much more first-hand knowledge and experience of the specific surgeries you’ve had, so I’d like to get her input.” I nodded, then introduced myself and began going through my surgeries one by one. Lexie then asked me where I had my surgeries and if I remembered the name of the doctor who performed them. Not only did I know who operated, but I also remembered the exact medical terms for all the surgeries I had undergone. The doctors at the Maternal Fetal Medicine Clinic seemed impressed by this. If they only knew the reason I remembered these things so vividly was because of how traumatic they had been for me as a child.

Then, Lexie said something that made my jaw hit the floor. “The doctor who performed your surgeries…he was my primary mentor and teacher.” What a small world, I thought. She then informed me he now practiced at a children’s hospital in San Francisco, and I couldn’t help smiling about what a reach my disability and life truly had. She then asked me a question I’ll never forget: “What is your preference for how you’d like to deliver?” I knew this question was coming, but it still surprised me. By this point, though, I had made up my mind. “I’d like a C-section,” I said. “They’re done all the time, and giving birth is going to be hard enough and full of anxiety. I don’t want to also be spending that time worrying about whether my body will cooperate from a mobility standpoint.” And that was it. It was decided. I’d have a scheduled C-section.

Before Lexie disconnected the call, she said, “Congratulations on the pregnancy.” She didn’t know that I wasn’t currently pregnant at the time, but the sweet gesture made me smile. For the first time, this felt not only very highly possible, but I’d learned that I’d have a stellar team of high risk doctors keeping a close eye on me once I became pregnant.

My partner and I found out we were expecting on December 21st, 2020, just a few days shy of Christmas. Since then, this journey has been nothing but a whirlwind. A scary, exciting, anxiety-ridden, wonderful, beautiful whirlwind. I think I knew even on that very first day of learning such life-altering news that I was about the embark on the most amazing journey, and boy was I right!

Come back next week to read my next blog post, titled “Pregnancy With a Disability: The First Trimester.”

Categories: Disability, Pregnancy

Getting Married with a Disability

Amelia Hall # # # # # # # # # # #

Today marks two weeks since I married the love of my life. I’m still catching myself saying my maiden name as opposed to my new last name, I still haven’t written thank-you notes, and there are wedding gifts still in their original packaging. But as I sit and reflect on my wedding day, I feel nothing but love and gratitude for the friends and family who helped to make it the best day of my life.

Like many girls, I spent my life thinking about what my perfect wedding day would be like. However, unlike most girls, my focus wasn’t on the details like the color scheme, flowers, table decorations, or the seating chart. I cared about one thing: the man who’d be standing opposite me as we promised to spend forever together.

Continue reading Getting Married with a Disability

Categories: Disability4 Comments

The Words of My Childhood

Amelia Hall # # # # # # # # # # # # # # # # # # # # # # #

A few weeks ago, my mom brought by two boxes of childhood memories that I knew I couldn’t part with, though initially I didn’t even remember what was in the boxes. As I took a nostalgic trip down memory lane one evening, I found diaries starting from when I was really young, stuffed animals I could never part with, and best of all, stories and poems penned by yours truly. Interestingly enough, as I poured through everything I had written (at least those of which I kept), I noticed some distinctions within the words.

Within writing, there is the concept of “finding one’s voice” as a writer. I used to believe I was still searching for mine, not knowing when it would be fully developed or when I’d know I had one worth remembering. However, the authenticity of my “voice” as a writer, especially once I was high school, brought tears to my eyes. For instance, I was looking through Academe, a literary publication my all-girls’ school published during my junior year of high school. I was mindlessly flipping through the pages, stopping at prose or poetry that caught my eye or pulled at my heart. I read a poem called “The Barn,” devouring it, literally hanging on every word, and wondering the whole time who had written the poem. It wasn’t until I reached the bottom of the page…that I realized the author was me.

“The Barn”

I am a lost soul

On the search of self discovery

Looking in every nook

Every cozy log cabin

Finally stumbling upon

An old abandoned barn

 

Its windows are shattered

Showing the whole inside

Much like a heart

Left for the world to tear apart

It is overflowing with hay bales

Resembling each happiness

Each piece of simplicity in life

But leaving gaps

Just big enough for grey skies to surface

 

There are camping lamps in each corner

Shining light upon this life

And guiding the way

But sometimes burning out

To force me to find my way

In complete darkness

Dead silence

And hazy fog.

© Trailblazing 2018. Unauthorized use and/or duplication of this material from TrailblazingWithCP is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Trailblazing with appropriate and specific link to the original content.

As you can likely deduce from this poem, I’m definitely an “old soul.” I wrote “The Barn” 9 years ago, at the age of 16. By that point, due to all the physical and metaphorical obstacles I had to traverse as a result of my disability, I felt like I had enough life experience to last decades. What I didn’t realize until I read this poem as a 25-year old adult is that I have always had a “voice” as a writer. Over the years, I have refined it, strengthened it, and molded it into the essence of who I am today. Even as a child, the foundation of my voice was there, sitting in the dark, patiently waiting on my words to bring it to life. Maybe I never had to “find” it after all. Maybe it was there all along, waiting for me to be ready to come looking for the piece of myself that would allow all the others to fall into place.

 

Categories: Disability, Uncategorized4 Comments

My Writing Is Getting A Facelift!

Amelia Hall # # # # # # # # # # # # # # # #

 

I’m typically not one for New Year’s resolutions. My stance has always been that if you want to change something in your life, you don’t need to wait for a specific day of the year to make those decisions. However, at the same time, I get it. It’s a new year. A chance to try new things, commit to things you’ve strayed from, or just make a commitment to treat yourself and the people you love better.

On November 1, 2011, I started my very first blog: Life In The Blue Ridges, and to put it simply, it was not only a smashing success, but one of the happiest times in my life. Back in 2011, I made the commitment to blog every single day for entire year, and I did it. It wasn’t always pretty. Sometimes I had something to say, other days I didn’t. Yet, I still posted every day. Even on the days when the words just wouldn’t come, I reflected. I posted the song lyrics to music that had been stuck in my head, I posted recent photographs I’d taken, or I talked about the book I was currently reading. Through a year of daily blogging, I found something I didn’t know I was searching for: my voice and a community. Simply put, I found myself.

A lot has happened since I first began blogging a little over 6 years ago. I met the love of my life, I graduated from college (BA in Psychology), I got my Master’s in Social Work, and I’ve traversed the daily grind of living life with a physical disability. A lot has changed since I first began blogging, but one thing has stayed the same: my love of writing. However, I’ll be the first to tell you that my blog in it’s current state does not reflect my love of writing. Life happened. School was placed at the forefront of my life. I fell in love. My career was my priority.

As previously stated, the happiest time in my life was when I was blogging daily. I’ve come to that conclusion. And I’ve also realized that the joy of writing can only be felt by writing itself. I’ve tried getting myself wrapped up in my job, reading a lot of really good books, and just doing things that make me happy. However, none of those things have brought me close to the bliss and authenticity I feel when writing. So here I am….back in the blogging community…and making the resolution to myself to write every single day once again. How long that will go, I’m not sure. As of now, I want to set the goal of writing every day for a year. I did it once. I can do it again. I’m sure things will come up that may derail that a bit, but when that happens, I’ll come back to the blank page and type one word in front of the other. That’s all writing is anyway, right?

Happy writing, friends. Here’s to a new year, resolutions, and lots and lots of writing.

Categories: Disability, Education7 Comments

Disabilities within Social Work: The Road Less Traveled

Amelia Hall # # # # # #

Two weeks ago I wrote a blog post expressing my stress and confusion regarding not knowing what I population I wanted to work with following graduation from my MSW program in May. At the time, I was considering either mental health or disabilities.

After having time to weigh my options, talk with friends and professors, and receive feedback from a stranger, I’ve made my decision. The disabilities field is where I belong. Not only is it my passion; it’s my calling. As someone with a disability myself, I have the ability to offer a unique perspective as a social worker that not many others can provide. Not only do I possess the knowledge as a social worker to look at each individual from a systems perspective, I personally understand the struggles and frustrations of living with a physical disability. I know without a shadow of a doubt that there a very few social workers who can bring in that kind of experience to further empathize with and help their clients on an even deeper level.

You’d think that finally nailing down what population I want to work with would make things much easier. And it has. But there have also been some challenges. For instance, upon talking with the director of my MSW program, I was told something I already knew but didn’t necessarily want to be the case. I was told, “There aren’t social workers in the disabilities field. So, if you want to work in the disabilities field, you’ll have to create a job for yourself.” Even though I already knew that there is a very apparent lack of social workers in the disabilities field, it wasn’t any easier to hear. However, it did help me to put things in perspective and gave me an idea of what to do moving forward. My MSW program director mentioned that finding a job within the disabilities field will be all about networking (as is the case for most jobs, but I think it’ll be even more important in my case). He advised me to literally talk to everyone I know about my passion for working in disabilities and use every possible interaction to discuss my interests and goals.

Following my meeting with my program director, I knew I had to get to work. Therefore, I started by updating my LinkedIn profile to reflect my interest in the disabilities field. Secondly, I decided to make myself some business cards so that anytime I meet someone I want to network with more, I can provide them with my business card. And boy and boy, they sure make me feel professional! 🙂

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For me, another important thing I wanted to be sure and market is my experience with public speaking on the topic of disabilities. Not only am I currently writing my memoir of living with Cerebral Palsy, I also love talking about my disability, especially in schools. When I lived in Asheville and was getting my bachelor’s degree in Psychology, I frequently spoke to groups of elementary and middle school students on the topic of disabilities and bullying. My experiences speaking to those children were some of the most meaningful moments in my life, and I definitely want to once again get involved as a public speaker within the school system to talk about disabilities. As of right now, I don’t have connections within the Charlotte Mecklenburg school system. However, my MSW program director notified me that he plans to reach out to someone he knows within CMS who would likely be very interested in having me come speak at some schools in Charlotte. So, I’m crossing my fingers.

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My first speaking engagement in Asheville, NC at Haw Creek Elementary School. November 2013.

Though it is somewhat frustrating to know that I’ll need to create my own job (in a sense), I am no stranger to going after what I want, even if that may seem impossible. Due to having a disability, I have faced many barriers throughout my life. However, that has never stopped me from chasing my dreams. So, the idea that there are not social workers in the field of disabilities won’t be a deterrant for me. On the contrary, actually. Because there is a lack of social workers in the disabilities field is EXACTLY the reason I need to go into the field. At this point in my life, I’ve become a pro at adapting to seemingly impossible situations, and I’m more than willing to do whatever needs to be done to provide individuals with disabilities and parents of children with disabilities the advocate they deserve!

Categories: Disability5 Comments

To Those Who Taught Me To Dream

Amelia Hall # # # # # # # #

When I was little, I wanted nothing more than to be a ballerina. Around Christmastime, my grandmother would take me to see The Nutcracker at the Koger Center. As I sat up in the balcony in my checkered dress and patent leather shoes, I stared with admiration at the character of Clara. I imagined myself twirling around in my own leotard with a toy nutcracker in my hands, lost in the music and a dance that was all my own. When I got home from seeing The Nutcracker, I’d put on my leotard and tutu, grab a favorite stuffed animal at the time, and twirl in circles to the music only I could hear.

It was in those moments, in the safety of my childhood bedroom, that I began to dream, imagining doing things I knew I wouldn’t be able to do in reality due to my disability. I imagined dancing with a grace I had seen only in ballerinas. I put on my ballet shoes and twirled until my unstable balance got the best of me and I fell to the floor in frustration. I even remember asking my parents if I could take ballet lessons, determined to learn how to create the beauty I had seen in the character of Clara. The opportunity never arose though, simply because I didn’t have the balance to be a ballerina. Despite walking on my tiptoes, twirling around in circles on those same tiptoes was out of the question.

As I got older and I filled my head with more realistic dreams, I never stopped imagining doing the things I’d never be able to fully experience. I thought of dancing to the music of my world. I imagined running down the street and feeling the wind on my face as I chased the orange and red sunset I saw in the distance. I pictured myself climbing the huge oak tree in my backyard, wanting nothing more than to find a sturdy limb I could sit on so I could rest my back against the tree’s broad trunk and escape into my favorite book. The creative imagination I possessed placed me right into the worlds I dreamed, though I knew I was so far away from actually experiencing them.

I am forever grateful to the people throughout my life who have encouraged my imagination and dreams. Though I was constantly reminded by other kids around me of the things I was unable to do, so many of the adult figures in my life understood the importance of believing in my creativity. Because of those individuals, I have learned what it means to still hope and strive for the things that still seem a bit out of reach. Through my ability to dream, I developed a determination that has propelled me through my life, despite stumbling again and again. While I may not have had the chance to be a ballerina who twirls endlessly with the grace of a perfect melody, I have sung my heart out at a voice recital, capturing an entire room with the simple sound of my voice. I have participated in theatre productions, achieving my moment in the spotlight by being Glinda the Good Witch in The Wizard of Oz. I have written of specific moments of pain during the months following intense operations, creating the same tears in the eyes of my readers that I possessed during my moments of defeat. Though I may not have had the chance to live the experiences I longed for, I have continued to move to the song of my own life, continuously grateful to those who taught me to dream and create my own destiny.

Categories: Disability4 Comments

On The Right Road

Amelia Hall # # # # # # # # # # # # # # # # #

This past Saturday, I graduated from college with a Bachelors in Psychology. As I sat in the third row among my classmates, barely viewable among a sea of blue, I was happy. I wasn’t the girl a few seats over who kept having to wipe away her tears. I wasn’t the guy one row in front of me who looked bored, as if he’d rather be any other place than seated among his classmates. I was the girl in the third row whose gaze kept moving back and forth between the keynote speaker and section 4 of the arena where my friends and family were sitting. I was the girl who was soaking up every moment.

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Author and higher education expert, Arthur Levine, was the keynote speaker at my graduation ceremony. At first, when he began discussing the current state of our economy and the degree of technological change within our society, I became bored. These were things I had heard countless times, especially within the bubble of a liberal arts university. However, what he said later made me perk up my ears.

“We need your help as part of the most diverse generation in U.S. history – we need your help to knit together a deeply divided nation,” said Levine. “We need your help in dreaming, designing and developing a new world tied together by technology. … We need your abilities and imaginations to create the first global society in history. … Tomorrow’s going to require leaders who want to help heal a pained nation and a troubled world – you can make a difference. … Making a difference is your birthright.” (courtesy of the UNC Asheville website)

Specifically, the last part of this passage touched me, most importantly the idea of helping to heal and make a difference. In many ways, since I have chosen to pursue my master’s degree in social work beginning in August, I felt as if Arthur Levine was speaking only to me. There were moments in which it felt like he was looking right at me. It was as if he was simply reassuring me that I am moving into the right field, while also moving into a profession that I have a true passion for. Receiving this kind of reassurance, which I assume was not his intention, was one of the greatest graduation gifts I could hope to have been given. It was as if the universe was saying, Yep, you’re doing exactly what you need to be doing, so keep going.

Therefore, rather than processing out of my graduation ceremony with a sense of worry and dread, I held my head high. I smiled because for the first time in my life, I truly felt like I was on the right road to start doing what I’m meant to do. What I also realized was that I’ve been doing just that for the past few years. I have been following my passion of helping others ever since I decided to open up about my experiences with Cerebral Palsy in January of 2012, and that passion has only increased since I have started speaking to elementary and middle schools on the topic of bullying as it relates to my CP experiences. So, though I haven’t started my master’s program yet, I do feel like I have been on the right road for a while now. Truthfully, I think I knew that the first time someone contacted me after reading a blog post of mine to tell me how opening up about my experiences has helped them to better understand what their son, their daughter, or they themselves are going through.

As I continue to enjoy my summer, and specifically focus more strongly on writing my memoir, I’ll push myself forward by knowing that I am helping others. Even if it’s just one person, I am helping that person to become more aware of disabilities. I am helping them to see the one thing that I myself still struggle to see sometimes: Different is beautiful.

Categories: Disability, Education, Writing6 Comments