Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy.
Wednesday, October 2, 2013 marks the second annual World Cerebral Palsy Day. Organizers are encouraging people to submit ideas that will help make the world a better place for those with cerebral palsy (CP). Some of these ideas will even be sent to inventors and turned into reality! Last year, one team created a prototype for a solar-powered wheelchair.
As many of you already know, my daughter Syona was diagnosed with CP just before her first birthday. I’m fortunate to have the opportunity to share our story with you — but ours is just one of the 17 million stories involving CP worldwide. To mark this special day I asked all my friends who have a connection to CP to help me create this post.
Taryn, 31, is an awesome CrossFitter, vocal advocate and one of my all-around favourite people. She created a video called The Triangle Girl. Her story is so inspiring that other people have since shared how The Triangle Girl impacted them personally. Taryn has cerebral palsy and she is one of those people who has touched my heart, despite the fact that we’ve never met.
“I want the world to know that I am no different from you in that I deserve respect and dignity, but that I am different in the way that I have been given a great gift: a disability. It has taught me about patience, unconditional love and acceptance for others — it has made me a better human being who understands at a deeper level. My disability makes me unique and I am proud of it. I am not a thing to be pitied. I can do many of the same things that you can do, but maybe just a little differently. It’s about stepping outside the box and opening your mind to the abilities that a person has. Focus on that. Accept differences, because we all have them. Cerebral palsy affects everyone in a different way. You cannot place us into a box and label it with any kind of accuracy.”
Naomi, 16, is Taryn’s “little sister.” She also has CP.
“Even though I have CP, it might slow me down. It doesn’t stop me from living my dreams.”
Dana Florence and Brenda Agnew both have children with CP. Dana is the executive director of a charity called Three to Be. Their mission is to advocate and raise funds to support and advance the development of innovative research, education and therapies for children with neurological disorders. They are hosting their annual Stems of Hope Gala on Friday, October 4, 2013, and I’m so proud and excited to attend this great event. Brenda is the director of Three to Be’s Parent Advocacy Link — a group that provides parents of children with special needs with the opportunity to connect with one another (including me!).
“A diagnosis of CP can bring with it many things: fear, hope, uncertainty, limitations and possibilities,” Brenda says. “For the person living with CP, and the families that care for them, their lives have been affected in ways many people will never understand. There are so many gaps in the areas of research, education and therapies for children living with CP, and, unfortunately, not enough funding and resources to fill those gaps. If we all do what we can, and play our part, we can find the medical breakthroughs, leading edge therapies, valuable information and support resources that our children require to give them a positive future.”
My friend Barb and her husband, Simon, started Zach’s List, which is a classified website for paediatric equipment. They’ve since expanded to a Facebook group as well. Zach’s List is inspired by their son who has CP. I’m in awe of Barb and Simon every day because they are awesome parents and have five awesome kids, four of whom are under five years old!
“The words cerebral palsy do not explain who my child is.”
Paige is someone who works with kids who have CP.
“A child with CP is much more than that… They are a child with personality and wit. They have moods, opinions, dreams and aspirations.”
My friend Ellen writes publicly about her son Max, who loves the colour purple and the movie Cars 2, over at Love that Max.
“Having cerebral palsy is not a tragedy,” she says. “My son doesn’t feel bad for himself; he only knows to try hard to overcome his challenges, and to enjoy life. Pity doesn’t help him — in fact, it debilitates him. If more parents encouraged their kids to treat him like any other kid, he would have a far richer social life. He may have CP, but he is still a kid.”
Nisha is a young adult living with cerebral palsy and writes about her experience and other issues that are important to her on her blog.
“I want the world to know that everyone has challenges, and mine just happens to be visible. CP is a neurological condition that I have but it does not define me. I don’t wake up every morning thinking, ‘I have CP, my life sucks.’ This is my normal.”
Veronica is another young adult with cerebral palsy and she’s creating a special video montage specifically for World Cerebral Palsy Day.
“I wish people knew [more] about CP. Everyone is different and has different things associated with it, but we all have feelings and we deserve respect. Be patient and do not judge people with CP.”
Is there anything special you want people to know about you or your kids? Tweet me @AnchelK or leave a comment below and let me know!