Family Stories


At No Hands But Ours, we love family stories. Since our inception in 2008, we’ve featured a wide variety of family stories – and we continue to add new stories regularly. Please use the links in the right sidebar to click through to stories on specific special needs, or you can scroll down this main page to read all our family stories.

If you are home with your child from China, and would like to have your family story featured here, just use this form to let us know.


 


A Brave Girl With A Big Dream

June 30, 2019 by nohandsbutours 2 Comments

“Courage, sacrifice, determination, commitment, toughness, heart, talent, guts. That’s what little girls are made of; the heck with sugar and spice.”– Bethany Hamilton

Arthrogryposis Multiplex Congenita. It’s a mouthful; most people shorten it to Arthrogryposis. Essentially, it means multiple joint contractures that affect two or more body areas. According to the Genetic and Rare Disease Information Center with the National Institutes of Health: “AMC is not a specific diagnosis, but rather a physical symptom that can be found in many different medical conditions. The signs and symptoms associated with AMC can, therefore, vary greatly in range and severity depending on the underlying condition.” This very basic clinical definition is pretty much all we could really get our heads around prior to bringing our daughter Sofia home from China eight months ago. The broad range of presentations for this condition and varied list of associated medical conditions was just too big to master.

We had limited medical information in her adoption file. Our plan was to just get her home and learn about her specific condition and unique needs from her medical team once here.



We were focused on one precious little girl with the sweetest little giggle and a mile-long ponytail. We had fallen in love with her when we met her on two previous adoption trips. She didn’t talk much when we met her in 2015 and again in 2016. She always stayed quietly nearby, sizing us up and occasionally dazzling us with the most brilliant smile.

She was typically on a wiggle cart (also called a plasma car), a little car that can be propelled forward when you rock side to side. We were told that she had difficulty self-propelling in a wheelchair due to weakness and limited mobility of her upper extremities. She appeared very independent and capable. Both of her legs were contracted and her knees were fixed in a bent position at about 90 degree angles.

We were told that she often expressed only one wish in life: to walk.



Once home, we took Sofia to the International Adoption Clinic at the Children’s Hospital of Philadelphia and to Shriner’s Hospitals for Children in Philadelphia. We learned that the type of Arthrogryposis she has is called Amyoplasia. Amyoplasia is the most common form of Arthrogryposis and is characterized by a lack of muscle development at birth coupled with joint contractures and joint deformities.

At CHOP, Sofia trialed a really cool device called the WREX Arm. It’s an exoskeleton that supports her arm when she moves, thus improving her range of motion and functional ability. We also found out that she has really good hand position and functionality in both upper limbs. She can write, feed herself and manage many self care tasks that are difficult for others with AMC. Sofia would not need surgery on her upper extremities and could achieve improved functionality with therapy and adaptive equipment. This was great news.

Sofia was seen by PT, OT and the seating clinic at Shriners. They lent her a wheelchair that fit like a glove and we discovered that she could, in fact, self-propel with a well made, lightweight and custom fitted chair. We also met with her surgeon at Shriners to discuss options for her legs.

Sofia was ten years old at adoption. She was well beyond the age of serial casting. Her options were to leave her legs as is and utilize therapy modalities to gain maximum functional ability or explore surgical options. Surgical options were presented to us and we all agreed that we needed a few months to think it over. The process to straighten her legs was going to be a big undertaking and we needed to prepare. Most importantly, Sofia needed to make a choice for her life and her body and prepare to follow through. There was much to consider. Surgery would be painful. The process is lengthy. The team would focus on one leg at a time. Learning to walk would be difficult and preventing her legs from contracting again would be a life long endeavor.



My husband and I respect the fact that this is a huge commitment for our very little, very determined girl and we did not feel it appropriate to impose our will on her. Sofia would be the one to endure the procedures and the pain. Sofia would be the one to put in the hard work and Sofia would be the one to decide if surgery was right for her. It did not take long.

A few days after meeting all of Sofia’s doctors, she came downstairs early in the morning. She and I were the only ones awake. She lay her head in my lap and said, “What would you do if your only dream was to walk but you were scared?” I asked her what she was afraid of. She said she was afraid of pain and she felt like it was too much to think about; she didn’t realize there were so many steps to the process and she thought it would be easier. We discussed pain management and how we would make changes around the house and in her life to adapt to her needs. I promised we would support her and get whatever she needed to make the process manageable. I taught her about pain scales and how we medicate when pain is low to prevent it from getting high. She liked this concrete information.

Then, I asked her what was bigger, her fear or her dream? She contemplated the question for a while. A few silent tears fell. She wiped her tears away quickly and told me it was her dream that was bigger and she could conquer her fears. She decided to move forward with surgery.

A few months later we returned to Shriners for our follow up appointment and started working on her plan.



On April 29th Sofia had surgery to begin the process of straightening her left leg. Her surgeon at Shriners released her left knee contracture and applied an external fixator to her left leg. She stayed in the hospital for four days. At home, we clean the external fixator pin sites twice a day. We turn the screw on the fixator four times per day to straighten her leg slowly. Once straightened, the fixator will stay on her leg for a period to hold position and then it will be removed and a full leg cast will be applied and left on for about a month. After the cast is removed she will receive a leg brace for her left leg and we will begin the straightening process with her right leg.

Sofia is stoic and serious about her recovery. She wants to do everything right and she insists on performing as much of the care herself as possible. She can turn the screw and does meticulous pin care independently.

Some days are harder than others. Some days movement feels slow, legs get bumped and anxiety is high. On those days we repeat this conversation:

“Sofia, why are we doing this?”
“To make my dream to walk come true.”

“Does it hurt sometimes?”
“Yes.”

“Is it a little scary?”
“Yes.”

“Is it hard?”
Tears fall. Hers and mine. “Yes.”

“Are you doing it anyway?”
“Yes.”

“Sofia, you’re so brave.”



In eight months, this precious soul left everyone and everything she knew to call a loud, messy bunch of strangers her family. She trusted us to take care of her, help her, teach her and to get her what she needs to make her one and only dream in life come true. How huge is that?

Sofia has the heart of a warrior and we are deeply privileged to stand by and support her on her journey.

– guest post by Holly (emory.holly@gmail.com)

Our Plan vs. God’s Plan

June 24, 2019 by nohandsbutours 1 Comments

Staring at the long list of special needs, trying to decide which boxes to check we were open to, seemed overwhelming.

Researching each medical condition was just as daunting. Did we check the right boxes? How can we “decide” which special need our child will have?

Arthrogryposis multiplex congenita (AMC) first seemed like a big scary word among many other medical conditions on the openness form for special needs adoption. When we first filled out the form, we checked “no” to arthrogryposis, meaning we were not open to a child with this medical condition. Clubfeet also received a “no” on our original form.

But now that form has long been shredded and recycled, the official form replaced with a big “YES!” Why the change, you might ask? We changed our answer because of a person. A very precious three year old who could not walk when we first saw his pictures and videos, but who I could tell was one of the most resilient people I had ever seen… and I couldn’t wait to make him our son.

/////

Rewind six years. When my husband and I were engaged, we decided we wanted adoption to be a part of our story. So we set up an adoption fund for our wedding; any monetary gifts would be set aside for a future adoption. My husband and I are both planners, so naturally we planned out our ideal future family. First, we would have biological children and figure out the whole parenting thing, and then adopt internationally. As the years went by and we couldn’t get pregnant, we decided to change our plans. God had humbled us. We could not plan out our ideal family. And, little did we know, our ideal fell way shorter than God’s marvelous plan for our family.

With the Lord’s guiding we chose to adopt from China and were ready to jump right in to the adoption process. But I was 29 years old…. so we had to wait again as China’s age requirement to adopt is 30. Time went by slowly, but we started the paperwork as my 30th birthday neared. During that time God spoke to my heart. “You are not surrendering to ME the openness form. Trust ME, I know who your child is.”

Almost overnight, my walls of uncertainty came down crashing as I saw my son for the first time on the waiting list. I was captivated by his video, how he was figuring out how to do things differently in spite of the challenges his body faced due to his medical condition. I could not describe the way I felt when I looked at him, day after day… I was drawn to him. I could clearly tell his condition was not one that we were “open” to.

But there were two things I knew: I loved this boy, and he was absolutely the most resilient child I had ever seen.

As days and weeks went by, joy flooded my heart and I began to hope. I prayed the same prayer day after day after day: “Lord, someway, somehow, allow us to adopt this precious boy.” My husband, you can about imagine, was in shock at my sudden heart change. One day I was hardly open to any special needs on the openness form, and the next day I wanted to adopt a boy with not one, but two moderate special needs. He was not ready to commit to adopting a child with arthrogryposis and clubfeet.

As I was quickly becoming defensive mother bear, my husband was weighing the costs of moving forward. We had to ask ourselves big questions if we adopted him: Will this boy who can’t walk at age three, be able to get up our stairs to use the bathroom or go to his room upstairs? Will we have to sell our house and move to a more accessible home? We are very active people, will our son ever ride a bike or play an instrument?

Over several grueling months of waiting, God united our hearts and we were ready to commit to adopting this precious boy, whatever future challenges would come our way.

But during the waiting, his file had been picked up by another adoption agency who was advocating for him and another family was considering adopting him. “Lord, what is happening? Why are you putting my heart through so much anguish?” I cried out to God and clung to His Word, especially Psalm 37: 5-6 “Commit your way to the Lord, trust in Him and He will act. He will bring forth your righteousness as the sun, and your justice as the noonday.” The Lord did act and brought about justice for this little orphan, and for my anguished heart. We were soon matched with our son and finished up paperwork to get to China as soon as possible.

In November 2018, we got on a plane to China to bring our precious son home. During our wait, he had received physical therapy in China and learned to walk. We chose the English name “Jadon” for him, because it means “God has heard” and “thankful.”



He bonded very easily with us and was clearly very well cared for at his orphanage. As soon as he was home he began physical and occupational therapy. We didn’t sell our house… he learned how to go up the stairs on his second day home. And within two months of being home he started riding a specialized bike. I cried when the therapist said we could take the bike home to keep.

Prayer after prayer had been answered. God had heard.



Jadon is not defined by AMC or clubfeet, but neither are we ashamed of his special needs. Our resilient boy continues to surprise us and others with the leaps and bounds he makes physically.

He brings joy to so many people, but none more than his parents. We are the ones who are blessed.

Blessed to have a son with arthrogryposis multiplex congenita and clubfeet.



Blessed to have a son who won’t give up and continues to prove his resiliency day by day.

– guest post by Angie

© 2019 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.