I often hear the word “wrong” to describe my child.
“What’s wrong with her skin?”
“What’s wrong with her face?”
Or, simply, “What’s wrong with her?”
My daughter Brenna was born three years ago and diagnosed with a very rare and life-threatening skin disorder. Her skin doesn’t do the jobs for her body that our skin does — things like protecting her from germs or helping to maintain her body temperature. She can’t even sweat.
To try to make up for this, her body produces skin too quickly, leaving her with the appearance of a terrible sunburn all over her body.
This lifelong condition affects our lives every day, sometimes in profound ways, as we try to care for her skin the best we can, but also as we endure the various kinds of public reaction that come from looking very different.
As it turns out, not looking like everyone else means that our daughter receives daily stares, pointing, comments and questions — questions about “what is wrong?”
So her skin appears different than most, and it doesn’t function like most. But wrong?
To be wrong is to be mistaken. And I don’t believe that mistakes happen with our awesome God.
When Brenna was just a few days old, critically ill, and in the neonatal intensive care unit, a family member approached us and said: “I haven’t talked to God in years, but I’ve been praying for Brenna.”
In that moment God assured me that He had an extraordinary purpose for her life, that He was bringing His children closer to Him through our daughter, and that He was working through her to reach the hearts of others.
I also soon discovered that God was also working through me, too, by giving me the courage to stand up and say that my daughter is not wrong, she is beautiful.
God has given us the courage to find the beauty in this life, not the tragedy. We believe wholeheartedly that Brenna was given to us uniquely; she was not given to us broken. She is beautifully created by God.
Within this, we are learning every day how to discover the beauty in the different and the unexpected. Where society often mocks different, we have found God’s beautiful creation in our differences and are learning to glorify His awesomeness through our distinct personalities, talents, and yes, appearances.
But as we all learn to appreciate and celebrate our differences — our own and each other’s — may we remember as well that the God who created each of us with unique a purpose and talents also created us with a likeness in His image.
We are different, and we are the same — none of us perfect, but formed purposely by a perfect Creator. And there is nothing wrong about that.
Related: Invite a friend over and serve her coffee in this inspirational mug and relax and enjoy the time together! Perfect for gifting too!Leave a Comment
Anna Smit says
What a beautiful post, Courtney. Thank you so much for this. Yes, there’s so much beauty in the unexpected and it’s when we start looking for it that we draw closer to God. And yes “formed perfectly by a perfect Creator” and not “wrong”. I’ve spent a large part of my life telling myself there’s something wrong with me, with words spoken hurting more deeply than they should, because I took them as confirmation, rather than speaking God’s truth against them. No, I’m not perfect, but my Saviour is and He has not made a mistake in creating me.
Anna Smit says
Just found your blog and read your post about your weekend away. Such a joy and inspiration to read. There is much to be gained by changing our perspective to one of trust, rather than one of fear. Your daughter is a blessing to me too, looking at that beautiful smile and the world she’s discovering.
Amy M says
Oh, I got all teary-eyed reading this. I’ve been on a similar journey. My son was born with a heart issue, and while he outwardly looks normal (just very small), he needs extra monitoring and treatments. I have definitely had times where I wonder why God had him born with this condition, and this is such a good reminder to just let go and see the beauty in how he was created. And God has made him such a wonderful little boy, challenges and all!
Your precious Brenna is beautiful!! She is unique as all of us are – her uniqueness (part of it) is visible. You were chosen by God to be her mother and she will be a very great blessing to you. My son was born with OI (brittle bone disease). His first break was at 6 months followed by additional broken bone approximately every 6 months of his life. I am honored to be the mother of such an exceptional person. He is resilient, persistent, determined. Along with several other serious problems including asthma, allergies, and persistent respiratory infections, I never expected him to live to be a teenager. God is so very good!!! That boy is now a healthy 41 year old farmer. He still breaks bones, has asthma and allergies, but God had and HAS a purpose for him and created him as he is and chose me as I was to be his mom and I am awed by God’s amazing greatness as he still leads us through life.
C Dotson says
Psalm 139 immediately came to mind as I read your post Courtney. In particular the passage from verses 13-15. The Psalmist speaks of God forming our inward being, weaving us in our mother’s womb (vs 13) and then in vs 14 these amazing words appear: “I will give thanks to You, for [d]I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well.” The notion that we are “woven” implies great care, and even artistry. Fear in this verse refers to “reverence” – again the idea of great care, but care in directing our view to God who called us into being. We are a reflection back to the one who created us, God our Father and we are wonderfully made. There is NOTHING haphazard about how we are created by our Heavenly Father. Each of us has our own idiosyncracies – those feature, characteristics, personality traits – that are uniquely part of the very fiber of our being – traits that somehow set us apart from others. To see these as God endowed attributes is to give them a greater context and hopefully direct us to see our value and worth in God’s eyes. How marvelous that you see the value and reverence taken in God’s creation of your daughter. May those who come in contact with your precious God-reflection, your daughter, be reminded of God’s great care and love.
Susan G. says
May God continue to bless you and others around you through your beautiful daughter Brenna. God has counted you worthy to care for such a wonderful special child. I am praying God continues to give you, your husband and son, strength, wisdom and great love as you care for Brenna in God’s most perfect way.
Thank you for this!
Beth Williams says
Thank you for sharing such a touching story. God does not make mistakes! We are wonderfully and beautifully made in His image!! Sometimes God allows the imperfections to happen so as to make others appreciate what they have. And quite possibly to bring others to Christ by showing them that we can love people n spite of imperfections thanks to God!
Having a child with Down Syndrome, I’ve heard, “what’s wrong with him?” for the past 29 years. The answer? NOT ONE THING. We knew he was created by design and on purpose by the Lord. WE see it…we just wish everyone else would see it, too. Because of our life with him, our world has been opened up to see the beauty in the different and the unexpected. An old, country pastor told us something early on, and it has stayed with me all these years, “God don’t make no junk.”
Hi Courtney. Thank you so much for sharing your family, your little girl is gorgeous. I love that photo of her when she’s drinking and looking up at her daddy funny, reminds me of the way my granddaughter looks at her grandpa when she disagrees with him, she’s just turned 2. Your children’s books on differences, needs to be in schools especially kinddies, there’s not many such books out there. Children needs to be taught early to respect and to be kind to others. I taught my girls very early about the love of God for us and how we should love others as well. I’ve always taught them to see the beauty in others.
It’s amazing watching them grow up doing just that. They once saw a homeless man drunk, long shaggy hair and unshaven sitting at the bus stop with his trolley full of his junk. They spotted him from our window and they begged me to give them some biscuits to take down to him to eat. I did, I also told them that he might need some money too so they took that as well. They would see children or people that were different, that didn’t stop them from saying hello and smile at them. A principle in their school told me one day that the school needs more of my girls in it. I’m not saying this to brag, parents needs to learn as well on how to teach their children manners and respect and especially how to love. Go for it Courtney, publish those books.
Chelsie Cobbett says
Beautiful story of how God is working through your beautiful family. 🙂 Said a prayer for Brenna and you all! Blessings on you 🙂