Friday, January 20, 2012

Cerebral Palsy: My Caregiver Story

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
Tell me who you care for, and briefly describe their disability.
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.
Erin at age 5
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
Erin is 11 years old now, so caring for her is just a part of my life by now. She has a respite care worker that comes every afternoon, which gives me a bit of a break. There's always something new to deal with, but it's not a struggle for me now as it was when she was younger.
Do you have a good support system?
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
What do you do for enjoyment?
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
How has being a caregiver changed you?
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.


  1. Angela, that is such a beautiful post :)

    I can imagine it is wonderful to see Erin's beautiful smile everyday from looking at her 2 year old photo, so sweet :)

    My Hubby has been so supportive helping me deal with my health issues and raising our kids, I really wish we had had other people around us to support us but it wasn't meant to be :(

    Have a lovely weekend, cheers, T. :)
    (A Createability Teammate :)

  2. Angela, you and Erin are both beautiful! Much love, my lovelies! Beth
    Being the Captain of Createability Team is a lot like being a caregiver. It has its challenges but most of all it has those beautiful smiles that warm my heart!
    I'm so glad you and Erin are part of the team.

  3. This is a great story. Parenting a disabled child comes with its difficulties to be sure, but it also is far more rewarding than anyone else realizes! Thanks for sharing, and if you're interested in any advice on cerebral palsy-related issues, I recommend checking out CP Family Network. It's full of helpful links and information, and it's a great way to get involved in the CP community. Anyway, thanks for sharing, and good luck to you!

  4. I'm sure Erin is so thankful to have a mom like you. There are some parents who leave their child alone after becoming aware of their disability. I'm pretty sure you've sacrificed so much for her, and I know your love for her will lead you to doing more for her. Anyway, it's good that she has a respite care worker who helps you. You'll have some break that you deserve and she can get some check ups. :)

  5. family caregivingCaregiver Space. The work we do at The Caregiver Space stems from our commitment to ensuring caregivers feel seen, heard and most of all supported.

  6. Taking care of a child with cerebral palsy is not easy as ABC. You need to be brave just to her feel that she is normal like other child. We need to let her feel that she is loved all the time. I am very proud of you. Happy Mother's day.