Growing up I have always been depending on others for my physical needs, mostly my parents. Getting me ready for the day. Feeding me everyday. I am always waiting for someone to help me. There is nothing I can do about it beside being patient. I could get frustrated, then nobody wants to be around me. The purpose in life is not just about gaining experience. Also to learn how to lift each other up. For this reason I wrote a song titled This isn’t the life I imagined. Most of the words came from my book.

This isn’t the life I imagined
Every time I see my muscles
Struggling to work together
Fighting against each other
Moving on their own
Having a mind of their own
Feeling like I am trapped in a broken body
Wondering how long I need to wait
Before my muscles start working together

Not much control over my body
Not able to take care of myself

Have you ever found yourself trapped?
Have you ever felt broken?

Listen to the words I am about to tell you
Look at me and know that
Even though this isn’t the life I imagined
Learning to admire the world in different ways
Not letting my body drag me down
Holding my head up high
Looking past my troubles
Shining through my broken body
Smiling into people’s hearts
Letting them know even though this isn’t the life I imagined
Everything will work out
Trust me, everything will work out

This isn’t the life I imagined
Every morning I find myself
Looking up at the ceiling
Listening to footsteps down the hallway
Laying helpless
Limited by my abilities
Wondering how long I need to wait
Before someone can start getting me up

Always depending on other people
Always waiting for someone to help me

Have you ever found yourself laying helpless?
Have you ever felt broken?

Listen to the words I am about to tell you
Look at me and know that
Even though this isn’t the life I imagined
Learning to admire the world in different ways
Not letting my body drag me down
Holding my head up high
Looking past my troubles
Shining through my broken body
Smiling into people’s hearts
Letting them know even though this isn’t the life I imagined
Everything will work out
Trust me, everything will work out

This isn’t the life I imagined
Every mealtime I find myself
Staring at the plate
Smelling the food
Sitting helpless
Stomach growling
Wondering how long I need to wait
Before someone can start feeding me

Not able to take care of myself
Always waiting for someone to help me

Have you ever found yourself sitting helpless?
Have you ever felt broken?

Listen to the words I am about to tell you
Look at me and know that
Even though this isn’t the life I imagined
Learning to admire the world in different ways
Not letting my body drag me down
Holding my head up high
Looking past my troubles
Shining through my broken body
Smiling into people’s hearts
Letting them know even though this isn’t the life I imagined
Everything will work out
Trust me, everything will work out

Have you ever had moments where an idea came to your mind and you wanted to write it down? That was me at night during the first two months of writing my book. There were times I wanted to jump out of bed and begin writing, but I couldn’t. I had to wait until somebody got me up in the morning. The first month of writing my book, I had many sleepless nights. I had no idea what I was getting myself into. Getting new ideas to expand my chapters is exciting and exhausting at the same time.

Over time I slowly told my siblings about my writing, but I didn’t tell mom and dad for a whole year. A part of me wanted to see how long I could keep it a secret. With Christmas coming up, I figured it was the perfect opportunity to surprise my parents. By that time I had already written four and a half chapters. On the morning of Christmas, we finished opening presents and my oldest sister was about to give them a copy of what I had written. I immediately felt overwhelmed with emotions because I had poured out my feelings into my book. I hadn’t expected to be so emotional. After my mom finished reading chapter two to the family, everybody was in tears. It was the most touching moment.

Having severe cerebral palsy is really frustrating physically, mentally, and socially. Things go wrong every single day. As I kept writing, I was able to explain my deep feelings. Over time, my mom and my sister talked to me about how much negativity my writing contained. The purpose of writing is expressing our feelings. The more I thought about it, the more I realized my writing wasn’t representative of who I am. Everybody knows me as a positive and uplifting person. Growing up I had learned to bury my frustrations and look past myself. With my slow communication, I never got the chance to talk about my deep feelings. Over the last two and a half years, I have gained better ideas of how to express in writing the way I cope with my frustrations and live to the best of my abilities.

Next week I will share a song that I wrote about my everyday life.

I have never learned to like writing which is funny. I type all day long every day on my communication device. I was born with Cerebral Palsy. For many years I pushed every single word and sometimes words with my nose. Now I have been able to type with my eyes. When it comes down to writing papers, it takes me three or four times longer than normal people. I spend countless hours writing. Then I work with my parents on going back and editing papers. To me, it is a lot of work and time. Growing up, I have always wanted to make a difference. Not just in the community, also in other people’s lives throughout the world.

Back in January of 2019, I just came home from a trip. I was figuring out what to do with my life. That point of time, I had an associate degree and couldn’t find a job. Keep thinking what is next. One morning, the first paragraph of my book came to mind. With my poor writing skills and no experience of becoming an author, I began typing. How little I knew, it took me almost three years and a half to complete my one book. Not edited yet. If I had known it would take me this long, I wouldn’t have started. There were times I wanted to quit. What kept me going? Sharing my point of view of what it is like being in a broken body changed other people’s perspective, including my parents.

Once I publish my book, I believe it will have an impact on families, doctors, nurses, therapists, etc. Throughout my life, I have been around all kinds of disabilities. Most of them are not fortunate enough to speak their minds. I have been in their situation of being totally helpless and speechless. My goal is to educate people what it is like and how to better help them. I want to make a difference in their lives. That is what inspired me to write my book.

Over the next several weeks, I am going to share different pieces of my book through weekly email and on my blog. If you haven’t subscribed yet, I strongly encourage it. Also I will talk about other books written by or, written about people who have Cerebral Palsy. Especially the books My Left Foot by Christy Brown, and, Inside My Outside: An Independent Mind in a Dependent Body by Sara Pyszka. The most popular is Out of My Mind by Sharon M Draper. If you haven’t read them, I highly recommend them. Their stories bring back many memories to me and my parents. I will share some of our stories while my book is being edited.