International adoption in China has changed dramatically over the past 5-10 years. I shared about this when we were in process for James because I was asked so often how we could so “easily get a boy.” One of the major ways that it has changed is that it is now primarily a special needs program, meaning that the majority of children placed for adoption have at least one identified medical or developmental need. These span the spectrum from a repaired cleft lip/palate, hearing/vision loss, limb differences, complex heart disease, spina bifida, cerebral palsy to global development delays and many, many other needs. In some cases it’s a mild form of these things and in others it’s more severe, or there are multiple conditions.
For this reason, the majority of families go into this process knowing that they will have to be open to at least one of these needs. The list of needs that we were open to in our first adoption was fairly conservative – at least to us. Things like hearing loss, cleft lip/palate, limb differences, hemophilia, etc. We felt comfortable that we could provide care for these needs and manage the impact within our family. But having walked the road of a medical need with James, and the road of behavioral needs with our other son, and having witnessed the amazing stories of so many other adoptive families who’ve brought home children with much more significant needs, we knew that our list would be longer this time. Because we’ve learned that by God’s power, we are stronger than we knew, and every moment of hard work is absolutely worth it.
So, our road to Emily was a little bit different because instead of signing up with an agency and then waiting for files or only looking at their list, we sought out our daughter first by watching advocacy pages on Facebook and advocacy websites and looking at files from a variety of agencies. The needs were a factor as we looked at files, but before we ever saw her file, we saw her face. We saw her personality as she bopped up and down in her crib and we found ourselves laughing and smiling as we imagined her looking up at us from the crib in our home waiting for us to hold her. We saw her need for a family. We wanted her.
But…she wasn’t available. Other families were reviewing her. We thought the door was closed. So you can imagine our excitement when the agency rep came back to us and said that her file had not been locked in and we could review it and consider her! We watched her videos again and were amazed because you would never know that this bouncy, happy girl was created with a medical need that often means a child has a lot of difficulty with gross motor development. As she crawled around eagerly on the play area floor, chasing a toy, we found ourselves cheering her on. This little one that wasn’t letting a spinal issue stop her from doing anything. And as she held on to that beach ball, in her FANTASTIC Celine Dion shirt, we knew we had to learn more because we really, really hoped she was the one.
Fast forward several days of intense conversations and research and our pre approval paperwork and agency application was on its way! We had learned that Emily has an official diagnosis of tethered cord syndrome and clubbed and shortened right foot. A tethered cord occurs because something is tethering the spinal cord – something is pulling it down. (This can actually develop in adults later on in life and the rate of adult diagnosis in the US is rising significantly.) In Emily’s case, what is pulling it down is a benign fatty tumor in the base of her spinal cord. The International Adoption doctor at CHOP believes it is what’s called “Lypomeningcele.” It is a form of spina bifida that occurs in the womb. In all likelihood, it’s impacting her hip and is what caused her leg to be shortened and clubbed. “Spina Bifida” can sound really scary to people and we understand that. It was pretty much all new to us. But it was not really scary. Why? Because of a little girl named Sydney.
Sydney was three years old when we had the privilege of teaching her Sunday School class for a year. She’s a teenager today (ummm…I feel old!) Sydney was one of four special needs students in our class that year. We had no training, no experience in teaching children with special needs. And at times we felt overwhelmed not knowing if we were doing it “right.” But God was at work even then. Because we will never forget the determined, joyful, spunky little girl that would walk herself into the room each week with the assistance of her red walker, ready to get right into the morning’s activities. Smart as a whip, this little girl never let anything stop her. She kept her family on their toes, determined to keep making progress and never look back.
Could we parent a Sydney? Yes. In fact, we wanted to, and now we GET to.
Emily will likely have minimal issues with things like walking or movement. But we don’t know. Her prognosis overall is really, really good from what doctors at both Mayo Clinic and CHOP have seen so far. She is likely to need multiple surgeries and she’s likely to have them within the first few months of being home. We know a lot, but we also have a lot of unanswered questions. So our first few weeks home will look like a lot of doctor appointments, second opinions, and scheduling therapy evaluations.
And here’s the rest of the story…
Emily, will likely blow right past all the limits and expectations we put on her. Just like her brother.
Emily, may get new diagnoses or they may change. And she’ll still be our Emily.
Emily, will face any surgeries with a family by her side to comfort, nurture, encourage and help. Any time of day, any time of night.
Emily, will be loved and treasured because she is Emily.
Yea, we have a lot of questions. And as waiting parents it is soooo hard to have unanswered medical questions. But the other questions matter more – questions like, what makes her laugh, what does her laugh sound like, how does she like to be comforted, what will it feel like to hold her, does she like being outside, what are her favorite smells, does she like to sleep on her belly or back, what’s her favorite food, what kind of music makes her happy…questions of the heart. Questions that aren’t skin deep. Because that’s the Emily we are bringing home. Not the girl with “xyz” diagnoses. She’s just Emily and she’s already so loved.