My Care Team Does More Than Care

Growing up with cerebral palsy meant most of my relationships were with adults. I was fortunate to have a loving family while I was growing up. To this day, my family is one of the most important blessings in my life.

I didn’t realize just how much this impacted me until my younger sibling began to attend birthday parties and sleepovers. I realized that my sibling could go to a friend’s house without wondering how they would get around someone’s house or use the restroom.

I knew I had very little control over who helped me with activities of daily living, even as a child. I would have felt uncomfortable asking a friend’s parents for help using the restroom. In addition, accessibility meant that my friends had to come to my house if we wanted to see each other.

Throughout my school years, I had a paraprofessional. In elementary school, it wasn’t a significant barrier. In middle school, my peers became more reluctant to interact with me because I had an adult nearby. By the time I started high school, I had lost interest in developing friendships with my peers.

Over the years of working with many of the same people, members of my care team have shown me how much they care about me. I first met my longtime paraprofessional in 2004. Nearly 20 years later, we talk on the phone weekly.

At school, I knew she cared about me. I could be myself with her and enjoy her company. I recall many times during the summer when she would take me to the library, out to eat or local playgrounds.

My best friend was an instructor at the martial arts school where I took lessons. Over the years, we grew closer. He is now my roommate and full-time PCA. He knows little things about me, like my favorite juice flavors and my favorite foods.

I have wonderful relationships with my medical team as well. I’ve worked with my current PT for three years now. I always look forward to working with him because we enjoy talking about sports, our family lives, and the TV shows we are watching. I appreciate when someone who is a member of my care team gets to know me beyond what they see in my medical records.

I worked with the same PTs for most of my childhood. I have seen the same physiatrist for over a decade as well. My primary care physician is located at the same medical office I’ve been going to since I was an infant.

All of the medical professionals I’ve seen have been excellent advocates for me as well. They don’t give up on me, which means more than they know. My doctors and therapists ensure to include me in my care, which is important to me.

I’ve met many excellent teachers, doctors, PCAs, and therapists. The devotion they’ve all shown me over the years hasn’t gone unnoticed. I am forever grateful to everyone that I’ve worked with. My doctors, family members, PCAs, and therapists help me live my life to the fullest.

1 comment

  1. You’re a delightful, intelligent and compassionate person — all are grateful to spend any time with you.

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