We first saw her profile on our adoption agency’s web page. Her special need was listed as lower leg deformity, a layman’s term for fibular hemimelia, a congenital condition of missing/shortening of fibular bone, curved tibia (shin bone) and underdeveloped foot. I turned to my husband and said: “Hey, she looks kinda cute, but we can’t adopt her. My mom would freak out.”
Months earlier when my mother first learned about our decision to adopt a child with special needs, she lost sleep and cried for several nights. When she was an infant, she contracted polio. Thus became the one with a “leg problem” for her whole life. She told me the tears that my grandmother shed for her could have made a river.
Understandably, parenting a child with a disability in my grandmother’s era, especially in an Asian culture, probably wasn’t the easiest thing to do. “I don’t want you to suffer like that,” she said. I assured her that we didn’t even check “leg problem” on our special needs list.
My husband said to me in a disagreeing tone, “Is your mother going to raise her or are we going to do that?” I looked at him in surprise, realizing he was serious about this child. So we contacted our agency and, long story short, five months later she officially became our daughter.
My mother’s reaction when she first saw our daughter’s picture (which I intentionally cropped) was: “She looks like you when you were little!” Then in a few seconds, she asked, “What’s her problem (meaning special needs)?” I sheepishly said that she had a moderate “leg problem.” Her response was not what I expected. “Tell her to be confident. A leg problem is not a big deal. You can still lead a full and meaningful life. Just look at me!” Apparently my grandmother’s tears and effort had paid off – and that’s probably why I’ve never really had a problem with a “leg problem”!
A divine appointment
Due to the doctors’ availability, our first medical appointment was not to an international adoption clinic, but to an orthopedic surgeon at CHOP – Children’s Hospital of Philadelphia. The surgeon rushed us through the options we had after a long wait. Basically, amputation would be an easier and quicker fix with one surgery, while leg lengthening/straightening procedure requires a series of surgeries throughout childhood. Although what the surgeon told us agreed with our prior research, I still felt the need to have a second opinion.
A fellow adoptive mom in Guangzhou gave me a phone number of her friend whose daughter had a similar condition. I called that momma from Alabama. Her daughter had the lengthening procedure at the Limb Lengthening Center in Sinai Hospital, Baltimore. It was a very informative conversation. The next day after our phone call, she texted me asking if my daughter was from Baotou? Yes, she is! This momma then texted me a whole bunch of my daughter’s pictures when she was 14 months old, a year before we adopted her. It turned out she went to Baotou on a mission trip and because our daughters had similar conditions, she was drawn to her and “prayed and prayed” for my daughter. This of course brought tears to both of our eyes. What a divine appointment and no wonder I felt such an urge to call her for advice!
Another divine appointment happened later in Sinai Hospital’s waiting room. I saw a Caucasian woman pushing an Asian girl in a stroller. Thinking this could be another adoptive family, I struck up a conversation with her. The little girl was also from China – the youngest of the seven girls adopted from China. I told her where my daughter came from — her state orphanage and her foster center. This woman then scrolled on her phone and showed me a picture… “Is this your daughter?” Yes! The photo was taken a week before we met our daughter. She had visited my daughter’s foster center! I felt so amazed and touched to meet a complete stranger who was able to provide us with another piece of my daughter’s history.
I was even more touched when I learned why this woman visited the foster center. One of the girls this woman adopted had died from a complicated heart condition due to lack of proper care when she was in China. This woman promised her daughter that she would help children who also were born with complicated heart conditions. She formed a charity organization to train orphanage staff and Chinese doctors to recognize and treat children with heart conditions. On one of her mission trips she visited my daughter’s foster center and took that picture of her. I started to realize how fortunate I was to be part of such an incredible community through my daughter’s adoption.
The amputation and a mermaid leg
I thought the consultation in Sinai Hospital with Dr. Herzenberg would put us in a hard place to make a decision. I expected him to persuade us to go through the leg lengthening procedure because that’s his specialty. But after seeing my daughter’s x-ray, he told us that the condition of her leg was quite severe and her ankle was very fused. Even if she went through the lengthening procedure, my daugher still would not have a very functional foot, plus she’d have a weaker leg (they can lengthen the existing tibia bone, but can’t give her the missing fibula bone).
He went on to tell me that there’s nothing that would stop my daughter from doing whatever she wanted to do. And then looking me straight in the eyes he said, ”Don’t worry, she won’t blame you… she won’t remember at this age.” I don’t think he was trying to persuade us in either direction. But I felt relieved that for our case, the decision of amputation was going to give our baby the best quality of life. My husband liked Dr. H for his knowledge and experience. We decided to have Dr. H as our surgeon for this surgery, and tibia straightening to fit a prosthesis later.
The surgery went smoothly and our hospital stay was only a few days. The harder part was the five weeks after the surgery when our little girl was in a spica cast that wrapped around her leg all the way up to and around her waist. No shower, creative diaper changes, and not much moving around made for a cranky girl who had nothing better to do than to watch movies on the iPad. Plus two weary parents who had to carry a cast-laden girl up and down the stairs. After the cast came off, we waited about six weeks for our surgeon to give us the go ahead to have the prosthetist make her new leg.
Shortly before our daughter’s surgery, my husband broke his toe and had to see a foot surgeon. He asked the doctor who he’d recommend for a prosthetist for our daughter. He recommended Swiss Orthopedics. And that’s eventually whom we decided to use. We were impressed with their professional knowledge and that they make their products in-house.
One thing they asked us to do was to decide on a favorite pattern. They would laminate it onto on the leg so it’d be more fun and meaningful to wear. I thought our daughter would pick a Queen Elsa pattern (and that’s probably what most little girls would choose, isn’t it?), but she chose the Little Mermaid instead. One of the first things we noticed about our daughter was her love of water – water for hand-washing, teeth-brushing, drinking, toilet flushing, water in any shape or form – and not to mention water for swimming!
And the day finally came. The prosthetist put that mermaid leg on her and for the first time, I saw my little girl standing with both legs. I couldn’t help but cry. Our little mermaid finally got her leg! She started to walk, to swing around and dance. She was so in love with her leg.
However, she isn’t too in love with the physical therapy sessions that we have to go through twice a week. Children’s Specialized Hospital has a great gym facility and nice staff, including a receptionist who always gives my daughter special treats. At first she was very excited to go to the gym. But between the hurtful stretches, difficult movements, and having to walk a certain way (the correct way) instead of her own way, she lost her willingness to cooperate.
Eventually – with mommy’s persistence, the dedication of a physical therapist and prosthetist, and the wisdom of Dr. Uustal, a rehab doctor who specializes in prosthesis – the little mermaid was able to walk and run like any other three year old in just two months.
Part of your world
In Disney’s “Little Mermaid” movie at the end when Ariel finally marries the prince of her dreams, the background music sings the song of her heart: “Now we can walk, now we can run, now we can stay all day in the sun. Just you and me, and I can be part of your world.” Although our little mermaid can walk and run with us, I feel it was not her becoming part of our world, but us becoming part of hers.
We’ve entered the world of special needs because of our daughter. When I see parents with children who have special needs, I’d want to pat them on their shoulder, let them know that they’re not alone, pray for them and cheer them on. I’d want to be their friend so I can find out what kind of incredible journey they’ve been on and how God has offered them hope on this long and difficult road.
As we have entered the world of adoption, we have realized that this is a world full of traumas and losses, yet at the same time of love and redemption. In one of the Empowered to Connect conferences I came to realize that God had called an army to join Him in the orphan care ministry, and what an honor it is to be a part of it.
I probably will never fully grasp the depth of my daughter’s losses and traumas, the extent of physical difficulty she does and will experience, or the emotional impact due to people’s lack of understanding of her special need. But through our little mermaid, God has opened our eyes to a world that we never knew existed. I am forever grateful that we get to be her parents, and to be part of her world.
– guest post by Yih-Pai