I am so so honored to share a new guest contributor today. She’s one brave and fantastic mom. I have loved connecting with Courtney of Blessed by Brenna and I know many will be blessed by her story today. The last series she did on “Celebrating Differences” was incredible. Courtney – I can’t wait to see how God is going to continue to use your gifts and your precious family to share His love with many. – Courtney DeFeo
When my daughter was first born, I thought they just needed to wipe her off.
At first glance, she seemed to be covered with a thick coating of white, causing confusion and near-panic with the medical staff in the room. It soon became clear that the towel the nurse was using to clean her wouldn’t alleviate anyone’s concerns.
Because the white covering was her skin.
Our daughter Brenna (our second child and sister to our four-year-old son Connor) was born in 2011 with a very severe, very rare genetic skin condition called Harlequin Ichthyosis (har-le-kwin ick-thee-oh-sis).
What this means is that there is a mutation in her gene that makes the top layer of skin. Her body recognizes this error and tries to make up for it by over-producing skin. She makes skin 10 times faster than we do, and she can’t shed it quickly enough, so she has thick, dry, peeling skin and we coat her in Aquaphor about 5 times a day just to keep her comfortable.
Basically Brenna’s top layer of skin doesn’t work. It doesn’t keep moisture in her body, it doesn’t keep bacteria out – which means she can get skin infections really easily – and it doesn’t regulate her body temperature. She isn’t even able to sweat, so she can overheat very easily and can’t be outside for more than a few minutes when the temperatures are over 85.
There are only a handful of people in the entire world who are past their teen years with this skin condition because it is so fatal. Still today, about half of the babies born with it die within days due to infection or dehydration.
Brenna spent almost 6 weeks in the neonatal intensive care unit, where we experienced every emotion possible, including an anguished Christmas Day as she battled an aggressive blood infection that nearly took her life.
Today, 21 months later, Brenna has fought through skin infections, surgeries and severe feeding issues (her body uses up all her calories to produce skin, so she had a g-tube placed in her stomach that we feed her through because she couldn’t eat enough to grow.)
We’ve never questioned why – we have believed from the very beginning in God’s plan for Brenna’s life. We feel that he is using her for so much good in our lives and in the lives of others across the world.
We have strongly felt since Brenna’s birth that she was given to our family to teach us about unconditional love, about the true meaning of beauty and to strengthen our relationships with each other and with God. And we also believe that God wants to use our family to teach others about these things, and about celebrating differences in all people.
There is a time in practically everyone’s life where the only place you can look is up. Up to heaven, up to God, placing all trust in Him. If you look away instead of up, you become lost.
I constantly hear the sentiment “God gives you what you can handle”, or that God gives you what you need to make it through a time of need.
But this can be misleading, because God’s strength is not simply bestowed magically upon everyone who is in a time of need. I myself look back on the first year of Brenna’s life and wonder “how?” How did we get through that time – physically, emotionally, mentally? And I know that it was all Him, working through us.
I think that God gives everyone the incredible opportunity to rely on Him. If faith can move mountains, then faith can also move us… faith can give us strength, hope, resilience, and love to not only endure our trials and challenges but to learn from them and to better from them.
There is no perfect. There is no normal.
But there is good, and good can be found everywhere, in every situation. It’s a constant decision we make to find the good and the happiness in life, regardless of what happens to us along the way. And having God on your side makes it a whole lot easier to discover and see that good.
Instead of thinking about what Brenna can’t do because of her skin, we strive to focus on all of the things she will get to do, and all of the things we will still get to do as a family. What I first thought was the worst thing that could happen to our family – having a child with severe physical needs who would likely die – has turned into more good than I could have ever believed.
Though she may have more challenges to overcome than most people, it is really up to only Brenna what she can’t do. And I am so thankful that God chose me to be her mom.