During the international adoption application process you go through a lot of training. A LOT of training. The goal at times seems to be to anticipate every scenario you might encounter with bringing a child into your home who has suffered immeasurable loss—of their birth family, caregiver relationships, heritage, language and culture.
You also talk about the losses that adoptive parents face. You don’t get to hold your baby from their first breath. You might not know their medical history. In many scenarios you miss out on the first, second, third year of life…or perhaps more. Your precious little one may not have the capacity to emotionally bond with you for a long time and could have emotional scars that extend well past childhood.
It’s hard to anticipate what will come. But you do your best.
In spite of all the training, recently we discovered something that they don’t (and really can’t) prepare you for in the adoption process. After all of your praying and planning and training and hoping and waiting:
Little “Meg” might have been just what we had been hoping for. About to turn two, she is a happy, social little girl, with some slight developmental delays that would be expected of any child raised in an institution. Our case manager Julie admitted that she didn’t know a lot about the rare genetic skin disorder little Meg suffers from: epidermolysis bullosa (EB). It initially sounded like she had sensitive skin that required some extra care to prevent infection.
Julie asked if we wanted more information. Meg is a waiting child, meaning that while attempted, no matches with an adoptive family have been made. While this wasn’t an official referral for us, our agency asked us to consider her because we had indicated that we might be open to some special needs. I agreed to receive an email with more details.
Based on Meg’s medical file, some photos, and a short video clip, we could decide if we wanted to continue to move forward with the referral. Nothing committal except a verbal agreement to get more answers. We had to respond within 24 hours.
It’s a strange feeling, knowing that you’re experiencing a moment that could change the rest of your life. I was oddly emotionless, though hungry for more information. Skin problems didn’t seem so bad. Was this like eczema or psoriasis? That sounded very manageable—and we didn’t care if there were cosmetic issues.
It turned out that epidermolysis bullosa is often called “the worst disease you’ve never heard of.”
I won’t go into great detail (I’ll add some resources at the end of this post), but with this disorder, the body doesn’t produce the protein the skin needs to keep the outer layer attached to the lower layer. With even the slightest friction, the skin blisters. Sufferers basically walk around with second-degree burns all the time. You have to drain the blisters, carefully clean the wounds and bandage them daily, as well as manage the pain (often with narcotics). You can expect lifelong medical interventions including skin graft surgeries. There is always risk for infection, which can be life-threatening. There are varying degrees of severity, but even mild cases require constant attention and care.
There is no treatment other than wound care and pain management. And there is no cure.
I looked at the pictures of this sweet little toddler. She had red splotches on her face and her ears. Her arms and hands were bandaged, and you could see flakes of skin on her fingertips. According to her file, she can only eat pureed foods, presumably because the blisters inside her mouth and throat make it painful to swallow.
She needs a family. Parents to tenderly dress those wounds, kiss that sweet little face, nurture her, gently rock her and assure her that she is loved and she is special and she is beautiful. As wonderful as her caretakers have been to help her survive thus far, this delicate “butterfly child,” as EB kids are often called, needs much more.
“We can’t take her.” The tears finally came when I said that out loud.
We’re not heroes
I hear a lot of feel-good stories about the adoptive families with the victory stories. The ones who takes in the “damaged goods” from our damaged world: the older foster kids, the sibling groups, the little ones with debilitating diseases and special needs.
You don’t hear so much about the families who say “no.” Yet I’m sure I’ll remember Meg for the rest of my life, with that nagging “what if?” and “where is she now?”
When we started this whole adoption process, we were challenged to stretch our thinking. Why do you want to adopt? Do you want to pat yourself on the back, do your good deed for a lifetime? Do you only care about certain orphans and not others?
It’s complicated and it’s hard.
A couple we know who are also adopting internationally had nearly the exact same thing happen a couple of weeks earlier. The wife said the only way she could describe it was that it was almost like a miscarriage. You lose something that you didn’t fully have to begin with—only the idea of it. And no one really understands what that is like unless they’ve been through it.
Marc played out a scenario in his head in which we were standing in a room full of potential kids we could adopt. Imagine if someone hand-selected one, and specifically asked YOU—“Can YOU take this one?”
And you say, “Nope. Good luck with that.”
I’ve seen waiting child lists before and while our hearts go out to them, we know that we’re not obligated (or able) to save all the sick babies. We hope and pray that if we can’t find “the one” on the waiting list, a better match will come.
So when a potential match DID come, our hearts went through a sieve.
On the one hand, I’m confident and faithful about the prayerful decision we made. When I looked at Meg’s files I couldn’t imagine her life with us—and I know that she will do better in a home where someone can be very attentive to her, where she won’t be in danger from her rough-and-tumble siblings.
But on the other hand, how can we not feel guilty? Someone asked if we could help, and we said no. It’s too hard, too inconvenient, too painful to deal with for the rest of our lives.
As adoptive parents, we’re not heroes. We’re not anyone’s saviors. We’re just people trying to navigate some tricky emotional waters and choose what’s best when every decision is hard. This situation has been humbling, and I believe that is a good thing.
All hope is not lost
I texted my adoption buddy the day we said no. Her response of love and understanding filled me up:
“This is just a small part of your story—and a small part of that child’s. Right after we had to decline our referral, we had a good friend, who adopted a girl with severe special needs about six years ago—who is absolutely thriving in their household—say to us, ‘You guys have to know, there were multiple families who needed to say no to her. And we’re grateful that they did, because it wasn’t God’s plan. He already knew she was ours, and they just had to say no for her to get to us.’”
I’m very hopeful knowing that this was only a little piece of Meg’s journey (unbeknownst to her!). Our adoption agency will continue to advocate for her, and I’m faithful that there are wonderful parents just waiting to welcome her home and give her everything she needs and more (in fact, if your heart goes out to her, please email me and I will refer you to our agency).
Here’s the take-home, friends, whether you’re an adoptive family or not. There will always be more needs in this world than we could ever hope to meet as mere humans. There are refugees, orphans, victims of violence and inequality and discrimination. We can’t help everyone, but we can help someone. Sometimes we have to say no, but that doesn’t mean that God is saying no. Maybe we can’t adopt, but we can advocate; we can donate; we can pray. Our family has been praying daily for this little girl ever since we found out about her. She’s not “ours” but she is HIS. It stretches my faith to know that he is working in her life…in ways greater than I could ever ask or imagine (Ephesians 3:20).
Through this very quick process I’ve learned about this rare and heartbreaking disorder called EB and if anything, there’s an opportunity to spread some awareness about it. There are 25,000 people in the U.S. who live with it. You can learn more at the Dystrophic Epidermolysis Bullosa Research Association (DEBRA). I also read some very touching blog posts on No Hands But Ours from families who did go through with adoptions of EB children: Binding Her Wounds and Gia.
I suppose we have even more surprises on the journey ahead. Thanks as always for your prayers and words of encouragement.
UPDATE: November 20, 2016
I just received word that sweet little Meg was placed with her forever family! My kids have not stopped praying for her and we were all thrilled to hear the news. She will be joining a family that already has a great deal of experience with EB, which is just perfect. Some wonderful people at a new organization called EB Promise advocated for her and continues to advocate for EB orphans around the world by providing their caregivers with necessary supplies and education, find them adoptive families, and support families through the process of adoption of a child with EB. You can learn more about EB Promise at their website or their Facebook Page.
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