In a past post, I’ve shared that our adoptive daughter, Eden, has a brain disorder called, “schizencephaly.” The longer we wait for her arrival, the more time we have to learn about this rare condition. Recently, we discovered two new things that provide insight into Eden’s special needs.
I always knew that schizencephaly was uncommon but I never knew just how extremely rare it was. There are currently no studies that have assessed the total number of people with the disorder worldwide, however one California study conducted in 2005 estimated that 1.5 in every 100,000 people are born with schizencephaly. That means an estimated 0.000015 percent of the population is born with this condition. Part of the reason why it’s so rare is because most babies who have schizencephaly do not survive past birth. What does this mean for us? There’s not alot of conclusive and helpful information about schizencephaly out there. It’s not a condition we can be plan for or predict.
Secondly, we recently learned that the separation in Eden’s brain may not only effect her mental and physical capabilities but even her emotional control as well. People with clefts in one hemisphere of the brain typically have paralysis on one side of the body. This is true of Eden. They also have many seizures. This is not true of Eden thus far. But, she has been known to have prolonged episodes of uncontrollable crying. Until recently, we never knew that this could be related to her disability. Of course, much of the crying can be caused by legitimately sad circumstances, her unique personality and/or even a sinful heart. The challenge will be to know how to respond appropriately when she has these emotional outbursts. Giving comfort, speaking the truth in love or even discipline could all be appropriate responses depending on the root of her response.
So, we now know two obvious but important things. One, because schizencephaly is so extremely rare, there is not a lot of information to prepare us to be well-equipped parents. And secondly, because the brain controls so many different aspects of personality and because Eden’s separation spans across many control centers, it will be difficult to discern what is a natural part of her personality that can be changed and what part is permanently effected by schizencephaly and cannot be changed.
All this is to say that we don’t know much about the current or future effects of Eden’s brain disorder. At times, this can feel quite overwhelming. Control is a favorite idol of mine that is not easily relinquished. The more I know about schizencephaly, the more obvious it is that I don’t know much about anything. All I can do is learn to trust and call upon Eden’s Creator. She is fearfully and wonderfully made in the image of God by God. Her brain, her personality and her entire life are all extremely rare because God created no one else like her in the world. He created her special. And because Eden has been specially created by the Father, then I feel special to be her dad. I may not know much about schizencephaly but I do know I love my daughter just the way God made her.