A few years ago, I was introduced to a little Kindergartner down the hall from my classroom who was born with a genetic skin condition called epidermolysis bullosa (EB). I didn’t know anything about EB, let alone even heard of this rare connective tissue disorder. But one look at this sweet girl is all it took to see that her skin was markedly different than any other child’s skin I had ever observed. Her paper-thin skin was dotted with blisters, sores, and small tears. In all other aspects, she was a perfectly normal child, but we as a teaching team knew we would have to educate our students on why this little girl’s skin looked so different from theirs.
I’ll never forget how her mother so calmly and patiently sat in front of my class with several sheets of tissue paper to show them why her daughter’s skin was so fragile. She explained that for most children, there are several layers of skin to protect the bones and muscles underneath. One child came up to try to rip all those layers at the same time and struggled to do so. Then she laid just one piece of tissue paper over her arm. “But this is how her skin is,” she said, referring to her daughter. My students’ eyes widened as they realized just how easy it would be to rip through only that one piece of tissue. “You might bump the edge of a table or chair and it’s no big deal,” she continued. “But when a child with EB does that, it’s a very big deal. It will cause a huge bump or blister that will take a long time to heal.” The children’s heads nodded in understanding. Over the years, I’ve seen this brave girl limp around campus with blisters on her feet. I’ve watched as her friends pushed her in a wheelchair when walking was too difficult. I’ve observed her hands wrapped in gauze more times than I can count. And despite the smile on her face, my heart can’t help but break a little each time, knowing that she simply can’t live life as a normal little girl.
As I continue to walk through this second year without my son, I’m realizing that my grief now isn’t so much about surviving each day, but processing the reality of what happened and coming to a place of acceptance about it. And that is a very difficult place to be. Emotions constantly seem to be close to the surface and one slight little trigger…or bump…may just cause a huge wound to open up that will take a long time to heal.
It’s almost as if my fragile heart has developed butterfly skin.
We often think that walking through trials and tragedies in life makes us stronger. We admire those people who seem to have a “thick skin”, where nothing appears to bother them. We’re encouraged as children to “be tough” when we get hurt. But truth be told, dealing with loss and pain and the difficult things of this world only end up peeling off layer after layer of our emotional skin.
God knew this would be this case for His creation, even though it wasn’t as He intended it to be. He watched for thousands of years as His people walked though suffering, pain, and loss. He saw their skin getting thinner and thinner. And then He did what He had promised. He sent Himself with skin on. He sent Jesus.
The Word became flesh and made his dwelling among us… John 1:14
And not only did Jesus live and dwell among us, but He taught. He listened. He healed. And then He did the unimaginable. He willingly chose for His skin to be beaten, whipped, torn, nailed, and pierced. For me. For you. And for all of His Father’s creation. Because ultimately…He loved.
But he was pierced for our transgressions, he was crushed for our iniquities;
the punishment that brought us peace was on him, and by his wounds we are healed. ~ Isaiah 53:5
HEALED. And not only healed, but SAVED. Like a butterflies emerges from its chrysalis, Jesus emerged from the tomb after three days, with a beautiful new skin to prove once and for all that He overcame death forever.
I know the ultimate healing of my butterfly skin won’t come until I’m in the presence of Jesus. But while I wait, I can choose to see my fragile skin as a gift. Not because of how it came to be, but because of who it’s made me to be. Yes, my emotions may just be under the surface due to my own grief, but I also have discovered that I feel more deeply for others in their pain. Their bumps and bruises affect me more profoundly and it is a privilege to spend time in prayer with God asking for their healing as so many have done for me. May you be encouraged today to be “Jesus with skin on” to those around you!
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.
~ 2 Corinthians 1:3-4