Janet Harrold describes the day she became a grandma as “one heck of a roller coaster ride. Emotions were overflowing, questions surpassed the highest mountains, and uncertainty scared the hell out of me!”
Janet’s granddaughter, Hailey, was born four years ago with athetoid cerebral palsy, which causes involuntary movements that can interfere with speaking, feeding, reaching, grasping, and other skills requiring coordinated movements.
“When your child or grandchild is given a diagnosis like CP, you crave information—not from text books, but from someone who is living this life,” Harrold explained. After Hailey was born, she Googled “cerebral palsy” and discovered a blog written by a mom whose child had the same diagnosis. At the time she had no idea what a blog was. But she learned so much from reading it that she wanted to help others who were struggling to understand what CP had in store for them.
Harrold, an artist, decided to start her own blog—Painting for Hailey—as a way to keep her family informed about Hailey’s progress, to educate others about her disability, and to raise awareness about CP. It has become her mission to help others with disabilities find the resources they need and to let others know that they are not alone. She believes that together they can educate others about how to talk and play with people who are a bit different.
Harrold quickly discovered that a lot of Hailey’s alternative therapies, which her family believed she could truly benefit from, were not covered by insurance. The financial demands of raising a child with a disability can be overwhelming. So she began selling her paintings to help defray some of those out of pocket expenses.
Blogging has been therapeutic for Harrold. “I’ve learned that we are not alone in this journey. There are so many other people who are living the same life as we live and are facing the many challenges that we face as a family each and every day.”
“Hailey has taught our whole family how to live a life that we never knew existed. She brings us to new places and gives us a new perspective on what is most important. She has shown us how to be better people and more accepting and aware of others.”
Hailey has also taught her grandmother that everyday simple tasks like being able to walk, or talk, or feed ourselves are not simple tasks for many people. Before her granddaughter was born she closed her eyes to people with disabilities. Now, she feels that people with disabilities are by far the strongest and most determined people she knows. “It’s ironic that we often perceive disabled people as weak,” says Harrold. “When in fact, they will endure more in their lifetime than many of us will even begin to endure.”
Harrold strives to enlighten her readers by sharing some of Hailey’s milestones, such as the simple task of learning to drink from a cup. When she learned that Hailey would need a wheelchair, she got on the Internet and talked to her blogger friends. “They’re the people who understand first hand what is going on in our lives, because it’s also going on in theirs.”
Then she gave herself a pep talk, which she shared with her readers: “I have to constantly remind myself to stay focused on the positive and not let these barriers swallow me up.”
“Writing this blog has impacted my life tremendously,” she says. “When I began blogging, I had no idea how therapeutic writing was going to be for me. Just being able to chronicle Hailey’s life and help so many others genuinely fills my soul. Hailey is the air that I breathe; she is the sunshine when it rains; she is my heart and my soul.”
Painting for Hailey is a wonderful blog. I have learned so much from Janet.
Great post! What an awesome nana she is!
Wonderful post. I love the idea that people with special needs are strong, rather than weak.
Tina, mint.doublescoop.net