Tuesday, October 26, 2010

God Created Butterflies

EB children are referred to as butterfly children because the fragility of the butterfly’s wings is much like the skin of a child with EB.  The butterfly is also a beautiful creation.  When I look at AJ as a butterfly child, I can’t miss his wounds and fragile skin but I also enjoy seeing the beautiful child that God created.  Society looks so much on outward appearances but there is so much more to be seen.

Psalm 139:13-16 (New Living Translation) states,
   You made all the delicate, inner parts of my body
      and knit me together in my mother’s womb.
 Thank you for making me so wonderfully complex!
      Your workmanship is marvelous—how well I know it.
 You watched me as I was being formed in utter seclusion,
      as I was woven together in the dark of the womb.
 You saw me before I was born.
      Every day of my life was recorded in your book.
   Every moment was laid out
      before a single day had passed.

I believe God created AJ and sculpted him exactly the way He intended; EB included. After AJ was born a geneticist searched for the, “defect” responsible for AJ’s type of EB and he found what he was looking for.  It is considered a defect in Type VII Collagen.  That’s why AJ was given the diagnosis of RDEB.  Different types of EB have different causes.  I encourage you to consider that God had a plan and purpose in creating AJ with that missing Collagen.  It wasn’t a mistake or some quirk in his development.  I believe the Bible directs that God is our creator and it is only in Him that we live.

Acts 17:28 (New International Version) states, "For in him we live and move and have our being." As some of your own poets have said, "We are his offspring."

What a privilege to be the offspring of the Living God; created in His image.

I hope you will join me in my search of God’s word to bring encouragement and truth into our lives.  I welcome your comments and questions.  Tonight is an early to bed night as AJ will have his G-J tube replaced tomorrow.  We are praying for a smooth tube change with as little damage to his skin as possible.



  1. Barb, Thank you for starting a blog and sharing AJ's story and your own. We are blessed to be able to participate in the journey with you! Love, Laurie and family

  2. Barbara,
    Thank you for starting this blog. May ever word you share bring glory and honor to our Lord.
    Elaine Sheffrey

  3. Baebara..what a nice tribute to your son..love the inspirational and positive outlook you have on life..You inspire me...