Celebrating Her Differences

July 11, 2017 amniotic band syndrome, Family Stories, June 2017 Feature - Orthopedic, missing fingers/toes, Orthopedic, referral, visible special need 0 Comments

Our adoption journey began many years before the first paper was signed and sent off to our agency.

My husband and I spent the summer after our junior year in college in China studying language and culture. We actually began dating at the end of our time in China and that summer holds a very special place in our hearts.

It was over those six weeks, the Lord burdened my heart for Chinese adoption. He began to work in me and was laying the foundation of what would become part of our heartbeat as a couple in the years to come.

I came back changed and knew that, one day, I wanted to adopt from China.

Eleven years later, married and with three kids, we knew the time had come. We sent off our application to begin our adoption journey. From early on, we felt orthopedic needs were ones we were capable of managing. We live in a place where, if needed, our child would have some of the best medical care in the world.

I will never forget getting the call. I answered as I jumped off of the machine at the gym and sat down in a chair that overlooked the pool. I heard the words, “We have locked a file for you. She has a need you are open to – she is missing digits.” Maybe that wasn’t exactly what was said, but that’s what I remember and all I needed to hear.

As our social worker sent over the file, I left the gym, called my husband and told him I had gotten the call and was coming home so we could open the file.

She was perfect. We knew she was meant to be ours and quickly began making the steps to submit our LOI (letter of intent) to commit to being her family.

In her file, we saw pictures of her fingers and toes and read a diagnosis we had never even heard of: Amniotic Band Syndrome (or ABS). ABS is a congenital disorder where body parts, usually limbs and digits, are wrapped in fibrous amniotic bands while in utero. It can cause amputation, constriction and swelling of extremities.

Her file revealed that when she was four months old, she underwent surgery to remove a large band presence from her ankle. Additionally, just three weeks prior to us receiving her file, she had a second surgery to separate her fused fingers. They decided not to do surgery on her fused toes. In her referral video, she still had her bandages wrapped around her fingers.

We were ready to go, full steam ahead, and bring our girl home. Though we were not sure what the future would hold as far as surgeries or therapies needed for her, we did know we would be able to get amazing care.

And we knew we wanted to help her thrive and to overcome what some may see as a limitation. We were ready to love her, care for her, celebrate her life, celebrate her differences and show her the love of Christ.

Once we knew the timeline for when we would be traveling and when she would be coming home, I began making calls to Boston Children’s and scheduling appointments. We are blessed to live near one of the top hand specialists in the country and were able to schedule an appointment within weeks of her coming home.

On the day of her first appointment, Dr. Waters checked her hands, feet, and calf. He was impressed with the quality of the separation surgery she received in China and even told us he would have done the same thing. He encouraged us to schedule follow up visits with him every six months to evaluate her progress but overall he said she looked great.

Our Zoe Beigh has been home with us for nearly three years. We’ve gone from six month follow-ups to annual follow-ups. Zoe is one of the most resilient, strong, determined kids I’ve ever met. She has a visible, physical difference that brings questions and makes her mind think on levels beyond what I would think is typical for five year olds.

For us, and for Zoe, her orthopedic need goes beyond the physical. She is developing like a typical five-year-old without limb differences. Her ABS and limb differences haven’t kept her from physically conquering anything. We’ve honestly been blown away with how well she has adapted.

However, Zoe is very aware that her hands, feet and leg look different than most of the people in her life. She asks a lot of questions and wonders why she only has nine fingers. She talks about the scar on her leg often.

It has become our heartbeat to love her in a way that celebrates her differences.

We point her to the One, her Creator, who loves her more than we do.

She is fearfully and wonderfully made. She is a gift and we love her more than our words can describe, yet know there is One who loves her even more.

We pray that we can continually point her to Jesus Christ.
We pray she sees her value in His eyes, not the eyes of man.
We pray she will celebrate her differences, find her identity in Him and grow to love Him above all else.

“I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.”
– Psalm 139:14

– guest post by Leigh: email || Facebook || Instagram

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