Tag Archives: Non-Profit Organization

Why I Love Working With Dying Children.

2 Dec

I read an article recently by a woman who teaches poetry and prose to dying children. Throughout the article, the author regularly mentioned how a certain little boy’s death would one day prevent her from ever returning to work. That little boy became another little girl who became yet another child. They all faced something we don’t talk enough about: death. Eventually, the author mentioned how this work contains so much sadness and fragility, and yet it is also the work she could never dream of walking away from.

Ever since August of 2013, I have been interning with Arts For Life, a NC-based non-profit organization focused on teaching art to children and families battling serious illnesses and disabilities. Specifically, I work with two populations of children: children undergoing treatment for cancer and other blood disorders and children undergoing physical, occupational, or speech therapy. I began this internship for a variety of reasons. However, the main one was due to my previous hospital experiences. As a child, I had to undergo three intense surgeries, which later included intense physical therapy, and I spent all this time in the hospital. During this time, the one bright spot in all the days of physical pain, tears, and uncertainty was the weekly craft nights. For one hour every week, I got to focus on making an art project rather than dwelling on how much pain I was in, which exercises I needed to do, or an upcoming surgery. Having a chance to put all my energy into something completely outside of myself helped to decrease some of my anxiety. Some of those nights, I dare say I might have even been happy. Due to my enjoyable experiences with art projects in the hospital, I knew I wanted to provide these same opportunities for other kids in the hospital.

Ever since I started teaching art projects to kids in the hospital, I have loved every minute of it. I love seeing the regular kids every week who have finally gotten used to me and will come up and just start talking. I love watching the kids burst with creativity, coming up with an alternative project I hadn’t even considered. I love seeing the smiles on their faces when they finish their project and run to show their parents. I love finding new ways to teach the children. However, more than anything, I love being able to take in all the different lessons they’ve ended up teaching me without even knowing it.

They have taught me the true meaning of strength. They have taught me what it means to not let an illness define you. They’ve taught me how “art” and “perfect” are rarely in the same sentence, and that’s perfectly okay. More than anything, they’ve taught me the importance of noticing the small things. One little girl I know is battling cancer, and yet she is one of the happiest little girls I know. She smiles, she laughs, and she plays. Most importantly, she does one thing I believe we often forget. She notices every moment: every smile, every time of laughter, every speck of blue sky. She absorbs every single piece of life, soaking it all in. I try more and more each day to live like her, but I’ve got a long way to go.

Numerous friends have asked me how I am able to be around kids who are dying. And you know what my response is? “How could I not?” These kids need me. They need the chance to be able to fully express themselves. They need a positive person in their lives who can bring something good into their hospital experience. They need someone who cares. A few years ago, I never imagined that person could be me, and yet, here I am.

I have yet to lose one of the children I teach. The more I read the article written by the woman who teaches poetry and prose to dying children, the more I’ve begun to understand that we all deal with death in our own way. How I react to losing a child I teach may not be the same way one of the child’s nurses might react. That being said, the important thing to remember is even if I lose I child I teach, there are still tons of other children who need me. Though one day may feel quiet as I mourn the loss of a particular child I cared for, there will be more children coming to clinic the following day, and I need to be the best I can be for them. Being sad around them isn’t my job. If I’m sad, they’ll get sad. That’s why positivity is so important.

Teaching art to children with serious illnesses and disabilities is not easy, but it is the first thing I’ve ever done that’s given me a deep sense of purpose. Seeing the smile on a little boy’s face means I was part of his happiness. Having a little girl cling to my leg begging me not to leave warms my heart more than she will ever know. I just hope one day these children will know how much they have changed my life.

Be kind, for everyone you meet is fighting a hard battle.-Plato

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When the stars align…with Easter Seals UCP.

1 Dec

Easter Seals UCP is a non-profit organization that supports families dealing with disabilities and mental health challenges. Over the past few months, I have been researching different Cerebral Palsy organizations to see if I could come across any information tailored towards adults with CP. Though I still haven’t found much useful information, I did find Easter Seals UCP. Upon looking at their website and the numerous blog posts by families dealing with disabilities, I was inspired. I was inspired not to focus on my own physical issues at the moment, but instead chose to focus on something that has just been coming to life since I started sharing my story of CP: my role as an advocate.

If you would have told me two years ago that my current primary focus would be using my own story and my personal experience with CP to advocate for kids with disabilities, I probably would not have believed you. I have never imagined that talking about my own struggles would be something I’d be able to do…much less want to do. However, since that is how things seem to have evolved, once I realized there were numerous Easter Seals offices across every state, I knew I had to get involved. The need to get involved led me to find out if there was an Easter Seals UCP office in Asheville, and I found it.

After connecting with some people in the Easter Seals UCP Asheville office through email and phone conversations and getting such a positive response regarding my desire to get involved within the Asheville community, I could not be more excited. At this point, I’m unsure how things will progress. However, after learning that the Asheville office works directly with families in the community, I asked if there had ever been any kind of program implemented that deals with the emotional barriers that a disability presents. Though there isn’t currently a program in place within the Asheville community that deals with the emotional side of disabilities, I told the Easter Seals Asheville office that I felt it would be incredibly beneficial for the community and that I’d be willing to help in any way I can. Long story short, I’ll be meeting with those at the Asheville office to discuss ways in which this kind of program could be implemented as well as general ways in which I can work with Easter Seals as a CP/disabilities advocate within the community.

Words cannot even express how excited I am about this possible opportunity. However, I know that without this blog and the incredibly supportive community of WordPress, I would not have been able to reach the point of talking so openly about my disability and what I’ve faced. For my entire life, I have struggled with the concept of belonging. However, I guess the part of my life that I was trying so hard to escape from was where I needed to be all along. Even though I didn’t have the opportunity to talk with someone who knew what I was going through during the years of my intense surgeries and physical therapy, I want to be that person for other kids with disabilities, and I want them to know they don’t have to go through it alone. Therefore, to all the families dealing with disabilities and the entire Easter Seals community, thank you. Thank you for helping me find another dream to strive towards.

Copyright: Easter Seals UCP.

Copyright: Easter Seals UCP.