We had no clue what was about to happen.
We have many folks in our circle of friends and family who have fostered and adopted, both domestically and internationally. We have loved supporting them, praying for them, and wearing the t-shirts. Shared stories and advocacy posts were a regular occurrence on our news feeds, but we never took the time to read them. We were content in our supportive role in our nice, comfortable bubble.
One day at the end of April 2016, an advocacy post appeared in my feed. For whatever reason, this time I decided to read it. It was for a 13-year-old boy in China who wanted Americans to know that his medical need wouldn’t keep him from being a great son in someone’s family. My heart was ripped right out of my chest. I had no idea. As a former middle school teacher and youth group counselor, I have a heart for pre-teens and early teens. And here was this boy trying to prove his worth.
I showed the post to my husband, and I didn’t expect him to even read it. But he did. And he was just as moved as I was. I’ll never forget his response. “It says right here at the bottom to click for more information. Let’s click.”
Wait, what? We’re clicking things now?!?
What is even going on???
That boy was not our son, but I will forever be grateful that his story led me to the list of other waiting kiddos, which was where we saw Elijah, our son. There he was – a 12-year-old boy listed with Klippel-Trenaunay Syndrome (whatever that was). We saw his picture, we watched his videos, and we saw quick references to his medical need. We did a little researching of our own and decided it was nothing we couldn’t handle. After all, we are in an area with an abundance of medical specialists! We decided to move forward.
What? It had only been a couple of days since we even began entertaining the idea of adoption!
But sometimes, when God says move, he means right now.
We had no knowledge of the “aging out” thing or expedites. We had no knowledge of the extra caution that comes with adopting out of the birth order of the family. We had no knowledge of vascular anomalies. But we were about to get a crash course in all three.
Seven of the longest yet shortest months of our lives followed and, in December 2016, we found ourselves in China meeting our now 13-year-old son. We were armed with information about Klippel-Trenaunay Syndrome (K-T), which affects his right leg. He has scarring and malformations from his hip to his foot. We did not expect him to be so ashamed.
He refused to talk about it. He refused to acknowledge it. He would change his clothes under the covers in the hotel. I think he believed he could hide it from us and we would never even know! But we knew. His right leg is noticeably larger than the left, even under pants, and his gait is clearly affected. Still, he continued on as if he had no trouble.
In the hotel room in China, my husband was watching some basketball and asked Elijah if he liked basketball as well. Elijah quickly replied, “No – my body doesn’t work right.”
It wasn’t until the very end of our trip that we had to really address the elephant in the room for the first time. We had decided to spend a day at Hong Kong Disney before flying back to San Francisco, and we needed him to tell us how his leg was feeling while we trucked around the park. The conversation was incredibly awkward and done sentence-by-sentence through a translator app:
“We know about your leg.”
“We’ve known all along.”
“We are here to take care of you.”
“You do not need to be embarrassed.”
“You must tell us if you feel tired or pain.”
It was an entirely one-sided conversation with zero replies. But he got the message, and we had an amazing day at Disney. We addressed the leg again for our flight as we used compression socks and walking around as much as possible in the air. Still, he wouldn’t respond and would only comply.
A few days after arriving home, I realized Elijah wasn’t using his robe for shower time but was instead trying to get dressed while still wet in the bathroom. I told him he needed to use the robe as our other children do – and how cool that it matches that of his brother! His response (via translator app) stopped me in my tracks.
“But everyone will see my flaw.”
I didn’t realize how much shame he carried until that moment.
My quick reply? “Don’t you worry! We ALL have flaws!”
The day before Elijah’s first visit to the specialists at the Birthmark and Vascular Anomalies Clinic, I was showing him the pictures of the team of doctors. I told him they were actually experts in medical needs like his. He was shocked. “I thought I was the only one.” Wow. Not even close, buddy!
Since then, we have are working to get updated images and a treatment plan. Recently, he has begun telling us when he feels pain. He still downplays it tremendously. We are working hard to encourage him to feel comfortable and confident. We are encouraging him to be as active as possible and to try new things.
He takes PE at school (where basketball is his favorite PE activity), he participates in frisbee golf after school, we go for hikes, and he has his eye on marching band in the future! We have even gotten him in pajama shorts at home, and the occasional shorts over full-length compression pants at school. Perhaps the heat of his first California summer will encourage him even more to let it all hang out!
With the help of a mandarin interpreter, the doctors told him over and over, “Your body WORKS! It can do amazing things! It will tell you when it needs a break! So go ahead and be active!” It was all I could do not to cry.
We are only at the beginning of our journey. There will be so much ahead for Elijah medically. He will deal with pain, bleeding, surgeries, MRIs, ultrasounds, blood clots, limping, and stares. But, he will no longer deal with them alone.
I know one of the things we are meant to do for this boy of ours is to help rid him of his shame. His whole life he had been taught that he had a flaw that must be hidden, that his body didn’t work, and that he was damaged. No sir. Elijah is fearfully and wonderfully made in the image of our Creator, and he is dearly loved.