Butterfly Skin

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



To Infinity…and Beyond

When I look at the night sky and see the work of your fingers—
    the moon and the stars you set in place—
what are mere mortals that you should think about them,
    human beings that you should care for them?

~Psalm 8:3-4

I recently visited ASU’s School of Earth and Space Exploration to watch a 3D, live-narrated program entitled “To the Edge of the Universe and Everything in Between”. Unbeknownst to me, this school at ASU is a leading center for space discoveries and study.  Who knew, right?  Plus, the theater was overly air-conditioned, which was another determining factor to attend.  (Hey, it’s how we survive the brutal desert heat of summer.)

The majority of the program was to impress upon us the sheer vastness of space. It began by showing the planet Earth, then zoomed out to show the hundreds of satellites that revolve around our floating home, and continued to pan out to the solar system, the exoplanets, the Milky Way galaxy, the multitude of galaxies, and beyond.  Like waaaaay beyond.  To something called “cosmic background radiation”.  What’s fascinating is that new information and depth to the universe are constantly being discovered.  The edge of the universe is continually being redefined.  My mind was truly blown away by what the latest technology has discovered about the seemingly limitlessness of space.

But perhaps what’s even MORE mind-boggling to me is that there is not one shred of information, not one piece of technology, not one single image brought to our eyes that is new to God.  He knows it all.  Every galaxy, every star, everything in the entire cosmos is no mystery to the Creator.  Yet, while my mind could not even begin to comprehend the vastness of space, I began to wonder if the edge of the universe is as infinite as the love of God.

Just as the show was about to wrap up, the narrator told us to sit back and enjoy as we “zoomed back in” through everything we just saw to the planet Earth.  Once again, I was awestruck….but this time not at the vastness of God, but at His intimacy.  To go from the edge of 45 billion light years away, to our rotating home of green and blue….let’s just say it makes one feel pretty small in the grand scheme of things. And yet, God knows every detail of each one of us, down to our very cells.

The night before my son went to be with Jesus, I watched as he and his friend stood in an open field and stared up at the sky.  In curiosity, I wandered over to them to see what they were looking at.  The absolute blackness of the sky illuminated millions of stars in our view – something we don’t often see because of living in a large city.  We commented on how vast space must be…and how amazing God was to have created each star with just a word.  Joe was so blown away by the sight of the stars, he took out his phone in an attempt to photograph it.  I was not aware at that precise moment that the night vision camera recorded the final photograph I would be in with my precious boy.

But in that moment…God knew.  

He knew what the next day would hold and how it would change our lives forever. There was no mystery to the Creator of the stars that one of His beloved creations was going home soon.

That truth is one of the hardest to come to terms with, and yet, is one of the most comforting lessons a grieving mother learns.  To know that every day of my child’s life was ordained from beginning to end, and that there was no single thing I could have done to change the course of how it ended….it truly does bring comfort to my overwhelmed heart of grief.

“All the days ordained for me were written in your book

before one of them came to be.”

~Psalm 139:16

My grief is constantly being redefined.  But my God is not.  God is who He was, who He is, and who He will be forever.  The circumstances of my life do not change God’s character. Nor will they ever.  It is ME who is constantly discovering the depths of His love and the infiniteness of His grace.  And now I am the one who stands amazed, looking up at the heavens, blown away by what God has done and continues to do in, through and for me.

My friend, I don’t know what kind of valleys you have walked through or are walking through right now.  Whether you saw it coming or you didn’t, be assured that NONE of it was or is a mystery to God.  His knowledge of this vast universe is certainly wise enough to know every detail of your life.  His intimate love for you can fill the very depths of your broken heart as He has done for mine.  His grace goes to infinity.  And beyond anything we could imagine.

When I think of all this, I fall to my knees and pray to the Father, the Creator of everything in heaven and on earth.  I pray that from his glorious, unlimited resources he will empower you with inner strength through his Spirit.  Then Christ will make his home in your hearts as you trust in him. Your roots will grow down into God’s love and keep you strong.  And may you have the power to understand, as all God’s people should, how wide, how long, how high, and how deep his love is. May you experience the love of Christ, though it is too great to understand fully.  Then you will be made complete with all the fullness of life and power that comes from God.  

~Ephesians 3:14-19