Leap of Faith

Kayla is a home school mom who loves to read, write, cook, and travel. She lives in East Asia with her husband and four awesome kids – three biological sons and one daughter, Jubilee, who is adopted from China. She blogs at Life is But a Breath.

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:

Jubilee1

“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.

Jubilee2

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.

Jubilee3.JPG

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!

Jubilee4

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).

Jubilee5.JPG

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.

Jubilee6.JPG



Comments

  1. Cynthia in Denver says:

    Thank you for sharing. Two weeks ago, we accepted a referral for a daughter with hemangioma. Until then, I had never heard of it. It had been removed from the right side of her face. I am thankful to the surgeon who removed it; as it was attaching to her carotiod artery and juggular vein. He or she left a very faint scar, as to cause her little angst as a teenager. Now… We wait. For the LOA. For the article 5. For TA. For her. OUR Emma.

  2. what a wonderful post ! Full of love ! I adopted our daughter last year, she’s now 8 and was born with an hemangioma on her face. She had surgery as a baby in China (aged 9 month, because of infection, but is for us the most beautiful girl in the world !!
    Because she asked us to do something with this “thing ont her face”, we recently met a surgeon (THE French specialist of face-surgery) and he said her he can do something to let this disappear (with a far new process of skin-re-creation) .. Seeing her smile at that moment was a wonderful time for us. ..
    We’ll do it next summer, during the holidays.

    You have a wonderful daughter, so cute,
    Thanks for sharing your story.
    (sorry for my english, I haven’t written in english for a while)

  3. After seeing that beautiful little face I don’t think I could have not accepted the referral either. Wow, I can’t believe how wonderful it turned out. I have two girls that were burned in China and that is what Julbilee’s looks like to me.

  4. i simply LOVE this post and your honesty and your sweet, beauitful girl!!!

  5. Cheri Franklin says:

    Thank you so for your post! So honest and heartfelt.

  6. Made me cry! Jubilee is beautiful.
    My neice from China has albinism and needs a lot of uv protection, so my sister gets her swimsuits from wholesomewear.com. Maybe Jubilee could wear one of those?

  7. Beautiful girl….beautiful parents. Thank you for sharing your story and giving me a boost of courage in whatever journey we decide to take on.

  8. Thanks for taking the leap!! Two of our adopted kids (both from China) are hemangioma babies – bu t not so large as your darling girl! We too have “dodged the bullet” of deep / internal damage too! Thanks for sharing so completely the journey you are on – I hope it helps others “leap” as well!

    hugs – Blessings on your journey – aus and co.

  9. Your daughter is one of the most beautiful girls I’ve ever seen <3 While I'm sure the "leap" was incredibly hard, you definitely made the right choice!! :-)

  10. This made me cry tears of joy. Bless you and your family. What a beautiful little one.

  11. She’s beautiful! Thanks for sharing that! If there’s another child with that condition, I’d be willing to take that child, because of your story. Thank you for sharing!

  12. Aw what a sweet girl! Thanks for sharing your story!

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