Nothing to Fear: Seeing Beyond the Check Box

June 20, 2017 adopting again, arthrogryposis, Family Stories, June 2017 Feature - Orthopedic, medical needs checklist, older child adoption, Orthopedic 3 Comments

She loves bubbles and baby dolls. Her favorite color is yellow. She is a quick learner and a compassionate friend. She has the most joyful laugh, and an infectious smile.

And we wouldn’t have known any of these aspects of our daughter had we been scared off by one single word…


Her story began like so many others.

She was born in a country that does not look kindly on physical differences, a society that is not equipped to support special needs. Placed under a tree by her birth parents and found by a passerby on their morning walk to work, she was brought to a nearby orphanage where she spent the next five years – until the end of 2015 – hidden in silence.

That same year my husband and I began feeling the tug on our hearts to adopt once again.

We were excited about the prospect of adding another Asian daughter to our family, a sister who could share cultural ties and sweet giggles.

We were also hesitant.

For our first adoption we set out to find a child as young and as healthy as possible. Selfish maybe, but as it was our first walk down the adoption road and we didn’t want to get ourselves in over our heads.

We felt that our little Meili was so very perfect for us, and were worried we might not be as fortunate a second time. So, as we filled out the medical conditions checklist once more, we closely guarded our hearts.

This medical conditions checklist is the list that prospective adoptive families review, to determine which conditions they would feel comfortable parenting. Once turned in, the list gives the adoption agencies a guide of what children they could confidently refer to their clients. The checklist is both useful and extremely intimidating. It is packed with many big and scary sounding words, and diagnoses that are not well known.

It was there, on this checklist, where we first read the word arthrogryposis. We turned to Dr. Google to get the cliff notes version of what this word meant and were immediately scared away by photos contorted limbs and painful looking metal braces that were used to aid in straightening them. We quickly checked ‘no’.

This special need was not in our comfort zone.

One day on social media – on a China adoption advocacy page full of waiting kids, our future daughter and I crossed paths. I looked at this advocacy page daily, not wanting to miss a single face. I think I knew deep down that one of those faces might be our daughter. And then, staring back at me from the screen that beautiful June day in 2016, was a sweet little girl.

In the video she was singing the ‘abc song’ and smiling with the most radiant grin. It showed her playing with other children and I could tell from the way she was interacting that her cognition was on track and she had a determination that comes from within.

Part way through the video, that word resurfaced once again. Arthrogryposis. This time, an amazing thing happened. Instead of turning off the video and moving on to the next child being advocated for, I continued watching, paying closer attention to this little girl’s every movement. I noticed some subtle differences in the way she was doing things but for the most part she just looked to be so happy and healthy and dare I say ‘normal’.

The video also mentioned that she had bilateral clubfoot and was not yet able to walk. Though this previously would have surely sent me running terrified, it was too late to run now. I was already smitten with this little girl. The video had given life to a scary word, and it seemed to me that little life might be our daughter.

After letting the idea of raising a child with mobility complications simmer in my mind for a while, I shared the advocacy video with my husband. His reaction was basically identical to mine – though her needs were not what we expected to parent, we were meant to be her family.

We began to dive deep into researching all things arthrogryposis and found plenty of useful information.

Arthrogryposis Multiplex Congenita (also known as AMC) quite literally means ‘curving of joints’. Children born with AMC have joint contractures in two or more areas of the body. The condition affects each person differently. Some may have just a few finger joints affected, and others may have joint contractures in nearly every joint in the body, including the jaw.

It is a non-progressive disorder and, generally speaking, the contractures are at their worst at birth. Treatments may include casting, physical therapy and possibly surgical intervention. The long term goal of these treatments is increased joint mobility, muscle strength, and adaptive training that will allow them independence in their daily lives.

We were surprised to learn that people with AMC tend to have above normal intelligence. Because their bodies move in a unique way, they need to adapt to doing everyday tasks in unique ways – which results in the logic and reasoning portion of their brain becoming especially well developed. We were also able to connect with other parents who are parenting children with AMC and felt encouraged by their obvious love for their children.

We asked our home study caseworker if we needed to update our medical needs check list to include AMC (we didn’t), then promptly made a call to the placing agency that had her file and asked what we needed to do to bring her home.

Months of paperwork and fingerprints and fundraising followed. During the wait we were saddened by difficult updates which documented broken bones and the surgeries she had undergone to stabilize her limbs, but also rejoiced with the encouraging updates, such as one that included a video of her taking independent steps for the first time, at the age of six!

The adoption process is nothing if not an emotional roller coaster.

On the day we met, I placed a necklace around our daughter’s neck – a silver ring with the silhouette of a gold tree in the center. The words ‘my family, my love’ are engraved along the outside. Though she may not understand for many years, it was our unspoken promise to her – a symbolic gesture and a tangible representation of her past and her future.

The start of her life was filled with sadness and darkness, and like roots, there are pieces of her past that are hidden and unknown. It is confusing and jumbled. But those roots, no matter how twisted, gave her life… and through them she began to grow.

And just like the tree she was found under many years ago, she will weather many struggles and storms in her future. These will only serve to strengthen her from within. No two trees, and no humans, are exactly alike. Their limbs do not grow in predictable ways, but each is beautiful in its own right.

There will be seasons of loss and seasons of growth; and through it all we will, as her forever family, shower her with all the love we have and help her to bloom and thrive.

– guest post by Angela

3 responses to “Nothing to Fear: Seeing Beyond the Check Box”

  1. mai says:

    Brought me to near tears. Thank you for your love and committing to this special little girl. I know she will blossom under your family’s love. She will forever be special in my heart.

  2. Laura says:

    Love this Angela.

  3. Angie Szyman says:

    So beautifully written, I love your story because I see so much of our own adoption journey in it too. We also were scared by AMC and checked “no” in the box, but God brought across our path a special boy with AMC who snatched our hearts and who we are now in process to adopt from China. Can’t wait to meet him! Love hearing these stories, thanks so much for sharing!!

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