We all face that moment of truth when the referral comes in, and we stare at our potential child’s special need for the first time (can “potential child” be an actual term?) Sure, we checked “yes” in the box for that particular special need, but now we have three days to decide whether or not we want to check “yes” to it for the rest of our lives.
Talk about a leap of faith!
During the paper trail phase of our China special needs adoption, my hubby and I spent hours pouring over all of the conditions on the special needs list. We researched their implications and their complications, in full deliberation over what to “accept” and what to “reject.” It felt more like buying a car than adopting a child. Passenger side air bag? Check. Heated seats? Check.
But what about a bad transmission? Would we accept a car that had no power steering? Or one with faulty brakes? Driving a car like that would be risky. Forget impressing our neighbors with our new ride. Forget driving long distances without a care in the world. It would be a battle just to get to Wal-Mart and back in a car like that.
It would be a leap of faith.
In the end, we felt limited by the fact that we live overseas, in a country where healthcare is undependable at best. Still, we checked “yes” to as many boxes as we could, and submitted our form to our adoption agency. Then we waited, prepared to see a referral for a child with cleft lip and palate, or an ear malformation, or a lazy eye.
We were not prepared to click on the attachment in my inbox and see this:
“H-h-honey,” I muttered to my husband, who sat beside me at the computer with his jaw hanging open wider than mine. “What in the world is that?”
Thus began our journey as the parents of a child with a vascular anomaly.
Jubilee has an hemangioma attached to her torso. It webs her armpit and includes a crude nipple. During her first three years of life, it stuck out several inches from her body and weighed at least a pound or two – oozing, cracking, bleeding, and causing her physical and emotional pain.
The weekend that her referral came in, we hardly slept. The doctors were telling us that her hemangioma could be connected to her organs. It could be affecting her motor skills development. She could have other anomalies, external and internal, which the orphanage had not detected. There were lots of question marks.
But what I couldn’t get over was her beautiful face, and in particular the look in her big brown eyes. There was a spark of life in those eyes, but only barely! I had a strong feeling that she needed to go home soon, before she lost that look of life altogether. As we prayed over her file, it became increasingly clearer to my husband and me that Hong-Hong was our Jubilee, and that her home was with us.
One. Two. Three. LEAP.
I’ll never forget the first time I saw Jubilee’s lesion up-close. I pulled her shirt over her head that first night at the hotel, and I’m sure my face revealed my shock, despite my efforts otherwise. She looked back at me searchingly, asking with her eyes, “What do you think of me now? Do you still want me? Do you still think I’m cute?”
I answered with a smile, touching her hemangioma with my bare hands. How hot it felt! The blood that filled it warmed it like a hot water bottle. I watched the expression on her face soften, though, as I applied cream to the rough, craggy surface of her chest.
And over the past year-and-a-half, we’ve watched the spark of life in her eyes become an awesome, roaring flame.
We went on furlough several months after “Gotcha Day,” and while in America she was accepted for treatment at Arkansas Children’s Hospital in Little Rock. There, surgeons started at the middle of her sternum and cut across her chest, under her arm, and around to the very tip of her lesion (which wrapped just onto her back). For several hours, they painstakingly removed the filling of her hemangioma, scraping it away from the muscle tissue beneath. Incidentally, it had not grown connected to any of her organs nor major blood vessels! Another win: the doctors were able to find her breast-bud in the mass, and they secured it in place behind her salvaged nipple, so that when womanhood hits she will look normal in clothes. We were thrilled for her about that!
When the surgery was over, the nurses returned to us our groggy, gorgeous little girl, complete with an enormous incision across her body. It would bleed for almost two weeks, and when it healed, the scar would be gnarled and sore. Hemangioma skin is very different from normal skin and doesn’t scar well. But with the help of special creams, we have been able to keep the scar soft and painless. Jubilee’s hemangioma now looks like this (and always will).
Our daughter’s torso no longer bulges. It no longer looks as if someone stuffed a pillow in her shirt. She plays Star Wars with her brothers, cuddles with her Daddy, and follows me around the house in a flurry of endless chatter. In fact right now, as an almost-four-year-old, Jubilee’s hemangioma (which still peeks out at her collar, and out from the end of her T-shirt sleeve) doesn’t bother her at all.
But when she gets older, it will be a different story. Jubilee won’t be able to wear a bathing suit, for example. Hemangioma skin burns easily and should be kept covered outdoors. No v-neck tees for her. No tank tops. And she probably won’t choose a strapless wedding dress, either.
So, what will her daddy and I say when she asks the question, “Why me?”
I have no idea.
I guess that’s why they call it a leap of faith.