To end Chiari awareness month, I have a few devotional thoughts on Chiari from some of my fellow moms. This was written by Jani. Not very long after Luke’s surgery, I was introduced to her at our church. Her daughter had just got the diagnosis. This is how she explains:
September is Chiari Malformation awareness month. Last September I would have not been able to tell you what that meant or why it was important. I saw no Facebook friends lit up with purple, no posts, no ribbons. This year, the word awareness takes on a whole new meaning for myself and my family. My 7 year old daughter Willow has been suffering from horrible headaches for years, headaches we were told were migraines. She has suffered from horrible insomnia, trouble swallowing, and random dizzy spells. When the constant calls from school got to be overwhelming, we finally demanded more answers about her headaches.
What followed was a whirlwind of experiences we never thought we’d have. Earlier this year we were told that she has Chiari Malformation. Huh? What in the world is that? Probably not anything to worry about we were told, but we need to have another MRI. That MRI turned into a consult with a surgeon, which turned into an appointment for my baby girl to have brain surgery. What you should know about me is that I am a planner. I like things to be predictable, orderly, and solution-focused. Suddenly I was tossed into the realm of the unknown; fearful, scared, and wondering how in the world we had gotten here. I would like to tell you that my first instinct was to rely on God, but it wasn’t. I went to the dark side pretty quickly, focused on the fear and worried for my girl. I am blessed to belong to a church where I serve with wonderful people, one of whom happened to have a son going through this very thing. We were put in contact with each other, and to say I probably annoyed the heck out of her with my questions was probably an understatement. It was that first point of connection, one of the more clear moments where I heard God say, “I’ve got you.”
I have learned that God made Willow a fighter, a fighter who had absolute trust that God would make her better. What I have learned is that all my planning means nothing compared to His plans. His points of connection are miraculous. The way He put me in touch with the people I needed, the way my daughter was a zombie in the hospital until her big brother showed up and she lit up with the biggest smile, the only smile, I’d seen in days. The way that He orchestrated us to live here, with the best medical attention we could get. I was slow in getting there, but this journey has shown me that I have to rely fully on God, because it really is all in His hands. In Jeremiah 29:11 it says, “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” When facing a silent disorder with no cure, plans for a hope and a future are the most comforting thing to have. I cannot wait to live out the way He has worked in our family, because I see the seeds of it sprouting even now.
Today she is 9 weeks post-surgery, with only one headache to speak of since then, no numbness in her limbs, and a happiness I wish I could put adequately to words. How blessed we are to see her discover life without the pain she had been dealing with for so long. What does purple mean for me? Sure it means Chiari and this thing we will always be aware of. But it also means hope and a future, and connections that only God can make. It means power and renewed faith. Purple is the color of royalty, so I suppose it’s a good thing I have a direct line to the King.