Lately I have felt God pushing me into sharing my story about my life with Amniotic Band Syndrome. I am a storyteller by nature but I have always been uncomfortable with this part of the story. However, God wants me to be the light of the world and come out of hiding. I was abused as a child and I felt so weird and flawed. In spite of being born with deformities, I have always had a deep set joy. I am naturally a joyous person, but the world has often tried to steal that joy. The shame that I felt came from mocking, cruelty and abuse.
When my mom had my little sister, eight years after I was born everything changed. She had finally gotten the “perfect child” that she longed to have. I understand her pain because her first two children were born different. My older brother has intellectual disabilities, he cannot talk normally or learn as others. Then I have ABS, and it caused her to show favoritism to my sister. It really hurt me when my mom told me that to my face. I felt a sense of not being good enough. My parents were abusive in different ways.
Μy mom would hit me, give my sister extravagant presents and attention, and she always seemed to be angry. I love my mom, and I forgive her because I know she loves me in her own way. She apologized to me about the things she has done. Our relationship has always been very complicated and hard. My daddy was abusive to my mom and emotionally unavailable for his children. I grew up feeling like I was a burden. Then having ABS made things hard in the outside world. My mom tried to protect me the best that she could when I stared going to school.
I was blessed that I really didn’t go through too much teasing. I had some bullies, but it was bearable. I learned to hide my hands and some people didn’t notice or pretended not to for my sake. My mom taught me to work hard and not give up too easily. She taught me to adapt and be resilient. I never received any disability money and I worked in many different jobs. I have had some discrimination with jobs, but I kept pushing. I often have been frustrated about why I had to go through so many bad things growing up.
When I began to learn about Jesus and grow in relationship with him, I found purpose. I realized that God uses people like me for his purpose!
“But God has chosen the foolish things of the world to put to shame the wise, and God has chosen the weak things of the world to put to shame the things which are mighty;”
I Corinthians 1:27 NKJV
What my mother saw as a curse, was actually a blessing! I have seen God’s miracles, provisions, and love in a deeper way than most people. The things I endured have taught me to pray, forgive, love, and serve others. I love to encourage people. I listen to people who feel unseen and ignored. I have a heart that is tender towards those that are broken.
One day about eleven years ago, I met a guy on social media that was born different like me! He encouraged me to write an article about my life with ABS. I always loved to write but was shy about sharing it with the world. I would share my stories in high school with a few people, but many never knew I had this talent. The article and a photo of me was posted. I told what it was like and the ways you have to encourage yourself, be resilient and determined. I talked about my faith, struggles, and the feelings that come from being so different. Little did Geoff know what a blessing that article was for me! I added my email address and shortly after, I began to receive emails.
The emails came from various people with ABS and they were inspired by my article and honesty. One mother reached out to me and asked me to meet her daughter with ABS! I was scared of that and I felt bad, but I felt unworthy at that time. I still see her posts on Facebook and her daughter is thriving! I am always so amazed to see those like me because growing up it was so rare. This disease only affects like 1 out of every 10,000-15,000 pregnancies. I was born in 1988, so it was less known about and before social media.
The beauty of social media, has bridged a gap for all of us affected by limb differences. We now can connect with people all over the world! I remember when I was in kindergarten, my teacher Mrs. Jones, found a lady like me to come and have lunch with me. It was so inspiring for her to show me her hands that were oddly similar to mine. She talked about her job as a journalist and how she still leads a full life. Then as a young woman, I met a lady that worked in a library and she had limb differences too. I introduced myself to her and we spoke about our differences. Everyone is different with ABS, its affects many different body parts. For me it’s my hands, left foot, and scalp.
If I am honest, I sort of felt like an outcast with the ABS community on Facebook. However, I think I was still living in my shame. They were bold and free and I was still finding ways to hide my hands. I was always good looking, so it was easy to let people focus on other parts of me. My parents never showed me the importance of being bold and not hiding. They didn’t know what to do with my deformity. I think they just pushed it out of their minds. They saw I was capable and they let it be. Now as God is calling me out about hiding. I feel that I must share.
I am very thankful for God touching my life, despite all of the pain and struggles. I still cling to hope, faith, belief in myself and it keeps me going. I pray that now I can truly be set free from the feelings of inadequacy and shame. I do not have to carry the guilt of my parents or their toxicity. I can move beyond that and be who I truly am! Everyday we are faced with choices, we must learn to lean into God’s leading. It’s in him that we have true freedom. Jesus changed my life and I will always tell of his goodness.
I am a walking miracle, not a curse! I am fearfully and wonderfully made! I have been talking to the little version of me a lot, apologizing to her and comforting her. She deserved better but Jesus has redeemed her life! She will use her voice and life to help others! I hope that you can take something from my story. I hope you learn to love yourself a little bit more, I hope you trust yourself. I hope you make living in the light a priority in the midst of a dark world. It is a pleasure to share my life and journey with the world. I have been blogging on WordPress for two years now! It has blessed me so much, I love reading your poems, stories and thoughts as well.
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