September is Chiari Malformation awareness month. To be honest, I didn’t know there was such a month until my social media began to fill up with purple. So I began to look up quotes and things that I could post on my sites in order to bring awareness and as I was pondering this issue a flood of emotion began to squeeze my throat as I really reflected on just what Chiari has taught me.
Chiari Malformation is what my then ten year old son, Luke was diagnosed with two years ago. Chiari turned our world upside down. Chiari was a game changer. Chiari taught me just how strong a mother I really am. Chiari taught me about the warrior heart my little boy has inside of him. Chiari has shown me just how much God loves not only my son but how much He loves me.
The color purple typically stands for invisible illnesses and conditions that can be debilitating or even fatal with no cure. Invisible illness means a person painfully hears the words often uttered “he/she/you don’t look sick” and does not show outward signs of the battle raging inside their body.
Purple. Invisible illness. What no one sees. Like when my son was diagnosed and suddenly reality got very real. Invisible illness, purple as my spirit began to fill with fear as I read all the possible neurological problems that can come with this monster. Night time was the worst for me. Purple, invisible illness as in no one knowing how I would tuck Luke in, hug him tight and every time I turned out the light and walked out of his room, I felt I was leaving a dark presence hovering over him named Chiari.
Invisible illness and purple as in no one seeing from the time he was diagnosed until his surgery, night after night I would set my alarm every few hours to get up to check on him because Chiari can block the CSF flow and his brain would not send the signal to tell my sweet little boy to breathe or not tell his heart to beat. Words can’t describe how my feet, so burdened with such fear, would heavily walk me up to his bed, heart pounding for what I might find.
However, here is the amazing twist in all of this. Luke, after the initial fearful reaction to learning of his diagnosis and impending brain surgery slept with a peace that I had never seen before in him.
Because for him, where I saw purple, invisible illness, a monster named Chiari, he saw God. God turned our world upside down. God was a game changer. God showed him just how strong a mother he has. God showed him the warrior heart he has inside of him. God has shown him just how much He loves him and how much He loves me and has done it all through Chiari.
Now the color purple has taken on a whole new meaning to me and yes it causes me to cry. It is not because he has Chiari but because it reminds me of the warrior spirit of faith and the power of prayer that has grown from Chiari; grown in my family, in my son, grown in me. Purple reminds me of the absolute power, the incomprehensible grace and God’s perfect plan that although is not always understandable will always make us all the better for it.
For more information visit www.conquerchiari.com