Congenital Conditions

From Brokenness to True Beauty- by Amanda C. Clark

I came into the world dead. Born prematurely via an emergency C-section/caesarean, I weighed 1 pound and wore Cabbage Patch Kids doll clothes to fit my tiny body. Confined to the neonatal intensive care unit for four months, I was diagnosed with Holt-Oram Syndrome, a genetic condition that is associated with a mutation in the TBX5 gene that can impact the skeletal development of hands and arms, and sometimes cause heart problems.

Life at home was happy, with parents who loved and cared for me. I was raised in the church and always had a relationship with God.  Growing up, I was treated the same as my brother. I never even knew I had a disability until I started attending school and experienced horrible behaviors from other children. I was treated so badly that my mom started working at my school as a teacher’s assistant. I thought it was great that I could eat with my mom, not realizing the real reason she was there – to look after me.

Initially a straight-A student in elementary school, my grades eventually started to slip as I hated going to school; the kids were just so horrible to me. By the time I was seventeen, I wanted to end my life. I felt like I could no longer take the daily experiences that I was subjected to. I still remember what happened like it was yesterday: I was in the tenth grade and wrote a letter to my parents with my last goodbye. I planned to take my life at lunchtime. I felt I would never be able to truly live, only just survive in the world I lived in. As I headed to the bathroom to carry out my plan, I heard my voice on the school intercom, directing me to come to the main office.

My jaw dropped when I learned my teacher discovered my suicide letter after I threw it in the trash. I was subsequently amused when the school counselor said she understood what I was going through. How could she possibly? She didn’t have a disability! But as we talked, she shared the insecurities she felt in her younger years, and I discovered that we were more alike than different. I realized that God saved my life that day.  

One day while hanging out, my friend Frankie introduced me to his friends. I waited on the usual question from people when I first meet them, and sure enough, one girl in the group proceeded to ask me what happened to my arm. But before she could finish her question, Frankie interrupted her, “Chill…that’s her Beautymark.” Beautymark? To hear that word describe the very thing that caused me so much pain over the years altered my thinking.

It took some time, but I eventually began to refer to my physical disability as a Beautymark. This word had such an impact on me, that years later I started Beautymark Community, which is a nonprofit to educate children and teens in public schools about disability awareness.

But still, I struggled as a teenager and into my early twenties. Being a people-pleaser is so much harder than being a God-pleaser because people will always be imperfect; living up to flawed standards led me into a state of depression. I had always lived my life so focused and concerned about the opinions of others, which caused me to do things I knew I shouldn’t, just to please man.

Dating brought on new challenges. Men seemed to assume that I would accept any type of behavior and be easy because of my condition. My oldest daughter Thalia’s biological family thought I was cursed by the devil because of my physical condition. He left us and hasn’t been a part of her life. Depression and anxiety led me to start drinking and smoking.

One day I was sitting on the porch and realized I had enough. I prayed to God to help me, as I knew I couldn’t keep living the way I was. I heard a voice say, “If you really want it, you’ll get it”. I went in the bathroom and flushed my cigarettes down the toilet, and never had another urge to drink or smoke since. I was ready to start living my life to please God.

After working hard to turn my life around, advice from my grandmother led me to write down qualities I wanted in a mate, and I began to pray for my future yet unknown husband. Soon, a friendship with a great guy blossomed into a relationship and on June 13, 2015, I married my husband, Keith.

I never understood how my parents felt about having a child with a disability until I experienced it myself. Everything looked okay on my oldest son’s ultrasound – he loved to suck his thumbs! After KJ was born in March 2016, he was wiped down, measured, and weighed, so we assumed all was well. It wasn’t until a different nurse bathed him the next day and showed me his Beautymark.

The first thing that ran through my head was it’s my fault. I felt so guilty and ashamed. I immediately remembered all of the things I went through and panicked. So many fears went through my mind as he grew because of how society treated me. KJ was diagnosed with Tar Syndrome, a genetic condition that affected his hands. His Beautymark was not even as noticeable as mine, yet I still wanted to hide him. But as he grew and I saw him in action, I knew he was going to be just fine.

A year later I was pregnant again and hoped this time would be different. My youngest son Josiah’s Beautymark was evident on the ultrasound. He had a shorter radius in his left arm, with only 8 fingers across both hands. My heart dropped.

After he was born, I felt so distant from him. I believed the way he was born was my fault and that any hardship he faced in life would be because of me. I now know this is not true at all but back then I didn’t know any better. I was so depressed after having him and felt unfit to be a mother. I later found out that I was going through postpartum depression. It was such an out-of-body experience; I didn’t want to hurt anyone or myself I just wanted to run away and hide from everyone and everything

I wondered if one day he would blame me. I constantly worried about how he’d be treated, and if he’d experience all the struggles that I had growing up. As I considered so many questions and fears, I soon realized that God could use any brokenness and make it beautiful. I was encouraged to build the confidence up in myself first so I could instill it in my children. How could my children be confident in the way God created them if their own mom was not confident in the way God created her? I realized the healing had to begin with me first. 

The healing began after we unexpectedly learned I had been incorrectly diagnosed as a baby. Josiah was tested and diagnosed with Holt-Oram Syndrome along with Tar Syndrome. His medical team asked me about my diagnosis and after testing me, determined that I did NOT have Holt-Oram Syndrome, but had Tar Syndrome also. That was a moment of relief because it was like I finally discovered who I really was, twenty-seven years later.

My healing continued when I created an Encouragement Wall, taking specific scriptures in the Bible where it talks about individuals with disabilities. After I was able to read how God views people with disabilities, it gave me reassurance and peace, even though back then I didn’t fully why. I started quoting the words on my wall to reject the negative words I had heard for so many years. I didn’t always understand why or how he could create someone like me knowing that I would experience what I have in this life. My confidence grew and I knew I couldn’t go in life without God! He showed me who I truly am and my worth in Him. 

And He’s giving me the power to forgive others who persecute me for the lack of knowledge. For me, he’s changed my perspective instead of me saying God why me? Now I say God why NOT me! There is a reason why we go through difficult experiences. I know this disability has given me a passion for people with Beautymarks. God took what the enemy meant for evil and is using it for good. God knew I would have a heart for people who have been stuck, people who feel like they haven’t been seen or valued, and people that are hurting. He’s taking that passion and made me an example of how He views people with disabilities.

My children have had their own challenges as a result of our family’s Beautymarks. My oldest daughter is constantly questioned about what’s wrong with her mother and brothers. The pain she experienced has led to her being an advocate. I’ve witnessed both of my sons get angry at kids continuously asking them what happened to their hands or why my son’s skin looks the way it does. I constantly encourage them to respond by educating them so they can educate others. 

I feel it’s my duty to show others to never be ashamed of their identity. No matter how we were created, we are all unique and made beautifully and wonderfully in the image and likeness of God. His word gives us life, peace, and joy. Even when we experience hurt and pain, we always have His love. Yes, it hurts at the moment because we are human. But His love covers a multitude of sins, even the ignorance of others.

As parents, we must always seek God and listen to Him, especially when it comes to dealing with and responding to our children with BeautyMarks. We must trust Him to lead us in how to respond to their unique situations and emotions. God created our children and knows them way better than us. They each were created with a purpose, Beautymark included.

Encouragement for Moms:

  1. Surround yourself with like-minded people and a like-minded mindset. You have to understand that not everyone is going to accept you and that’s OK. Keeping the people that are for you in your circle will help you.
  2. Social media can bring connections with people all over the world who have Beautymarks. You are not alone.
  3. Positive affirmations are key. Whether it be through scripture or encouragement, be sure to have your children recite affirmations every given chance. Especially in the mirror. 
  4. When approached with comments or questions, do your best to educate others and encourage your children to do the same. But also remember to pick your battles. Every comment doesn’t deserve a response.
  5. Finally, and most importantly, give it to God. When things get under your skin and emotions are uncontrollable, step back at that moment and just let God deal with the situation and hope and pray for the best. 

Prayer for Moms:

Hey Papa, it’s me again! I’m coming to you asking that you would heal these beautiful children of yours no matter the age. That you would hear their cry the way you heard mine. Help them realize that they are respectful and intentionally created with a purpose. Show them Lord your unfailing love and help them to forgive those who are ignorant. Give them wisdom and abundant favor. Protect them and keep them safe from hurt, harm, or danger Seen or Unseen. May they be blessed, and their children be blessed, and their children’s children. I break any stronghold of any kind that will withhold them from all that you have to offer them in Jesus’ name. I pray that they would be encouraged to know that if I can, they can. And I thank you and praise you for giving me the privilege to serve you the way that I have been created. I pray that you would show your people their worth in your Papa and NOT this world! I pray that they would have confidence in the way you’ve given it to me. I thank you and I love you for all you are and all that you will continue to do.

In Jesus’s name. Amen

~Amanda

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Want to hear more of Amanda’s story? Watch her Moms Night In Conversation on YouTube

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