I introduced you to my new friends on Etsy's Createability Team several posts ago. They are either disabled themselves or caregivers to a disabled family member. Our lives are not your everyday, run-of-the-mill experience. We share this common bond called disability, and they are all so inspiring to me.
I have asked some of them to share their stories here on my blog. Being the mom of a disabled child, I will be focusing on the stories of the caregivers. And it's only fair that I start with my own experience. This is written in the form of an interview.
|Erin at age 2|
My daughter, Erin, was diagnosed with encephalitis at 2 weeks old. It caused extensive brain damage, which lead to her diagnosis of Cerebral Palsy.
What are her limitations?
Erin is profoundly disabled. She's completely reliant on us for everything. She also deals with seizures, but they are pretty much controlled by medication. She does go to school, which she loves. And we take her out for different things, like the grocery store and occasionally to one of her brother's ball games. She doesn't like a lot of noise though.
On a daily basis, what is the most challenging part of caring for her?
Physically, it is lifting her. She's over 70 pounds. We will soon need to have some lifting mechanisms installed so we won't hurt ourselves. Mentally, I would say worrying about her when she gets any kind of respiratory infection. Pneumonia is something I'm always looking out for.
What is the most difficult thing you've ever dealt with in regards to her disability?We found out about a year and a half ago that Erin had a detatched retina. She had just had surgery to insert rods in her spine for scoliosis. One of the risk factors was blindness, from having to lay on her stomach for so many hours. Sure enough, she began experiencing problems with her left eye afterwards. We were first told glaucoma, then cataracts. It turns out the retina was causing the other problems. She's had several surgeries to fix various things. The eye is not something that can be fixed. I think that's the reason it was so devastating to me that she was blind in that eye.
Do you have your situation under control, or are you struggling with it?
|Erin at age 9|
I do. Besides my family, friends, and church, I have met some wonderful people on Etsy who deal with the same issues I do. We belong to the Createability Team. It's composed of members who are either disabled themselves, or caretakers for disabled family members. They are wonderfully talented and inspiring, and supportive of me. And I enjoy being there for them as well.
Has your situation affected other relationships in your life?
Actually, my closest relationships are probably stronger now. I've heard that marriages fall apart when there is a disabled child. I'm so thankful to say that my husband and I became closer. We really are a team, and those close to me are very supportive too. I think others just don't know what to say, or how to relate to me. So making new friends is very difficult.
|Erin age 11|
I love to sew. Being creative is so soothing to me. Plus, I get to use my creative outlet as a way to earn a little extra money. As a couple, our entertainment consists of watching our oldest son play sports, which we love to do. We rarely go out, and never take vacations.
What is your favorite attribute about Erin?
Erin has the most beautiful smile. My favorite part of the day is going into her bedroom first thing in the morning. She always wakes up happy, and gives me the purest, most genuine smiles. It absolutely warms my heart.
What is it about your life as a caregiver that you want others to know?
Being a caregiver makes you feel like you lead an isolated existence. If you know someone who is a caregiver, understand that they need support. They appreciate communication from "the outside world".
|Erin and Mommy|
I am much more patient than I was before. You have to be.
Have you learned anything about yourself?
I hear all the time "I don't know how you do it." Well, you just do it. I've learned that I can handle whatever God gives me. I've learned that there is a plan and a purpose for everything. I was chosen to be Erin's mom. And God has prepared me my entire life to do this.