When I Felt Judged at the Grocery Store After my Son’s Diagnosis

Mighty blog 2I only had a moment to run in for an emergency stop at the grocery store. I had so much stuff to try to fit in that day, (like trying to find big boy pajamas that buttoned down the front). I had just found out my sweet little boy had to have brain surgery.

During the first few days of learning he had Chiari Malformation, an incurable condition and needed surgery, I had such a hard time being in public. It was difficult seeing everyone go about their normal lives when it took everything I had to not fall apart with worry about what was to come. The hysterical emotions rocketing through me at that time made it exceedingly hard to fight the urge to scream, cry or both, so a trip to the grocery store was not an easy task that day.

My goal was to just get in, get out and I had almost succeeded when I turned the corner and passed her. She looked me up and down, judgement etched on her face, then scoffed and smirked as she passed. Maybe she was just having a bad day. Maybe she didn’t like the way I looked or what I was wearing. Who in the world knows? I made a beeline toward the register swallowing back tears, refusing to allow them freedom until I got to the car.

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The whole incident only lasted five seconds, but in that brief moment, my fragile spirit was crushed. Although it’s been over a year since my son’s surgery, I have still not forgotten the look on her face that day in the grocery store. It woke me up and got me to thinking. We have hundreds of five second interactions every day and we really have absolutely no idea what others around us are going through. It made me realize how in just five seconds, we have the power to change things, to go a little farther, or to do a little extra for others, (even encourage a mom who is carrying a world of worry on her shoulders).

In just five seconds, I can smile and ask how you are doing, or give you a compliment. In five seconds, I can look you in the eye and acknowledge you instead of making you feel less or even invisible. In five seconds, I can give my children a few more kisses or a big bear hug rather than say I’m too busy. In five seconds, I can take my husband’s hand rather than push him away. In five seconds, I can give my loyal furry friend an extra scratch between his ears. In a matter of mere moments I can truly make a difference in those around me and in the lives of those I love so much.

In just five seconds, we have the power to encourage or discourage. What are you doing with yours?

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Guest Post: Chiari’s Plan God’s Plan

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.
IMG_2905What 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 Willow chiari 3happiness 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.

Why Purple Sometimes Makes Me Cry

My Son Chiari WarriorSeptember 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 just one year 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 the Lord Jesus 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 meaning a person painfully hears the words often uttered “he/she/you don’t look sick” or 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 not send the signal to tell my sweet little boy to breath or not tell his heart to beat. Words can’t describe how my feet, so burdened with fear, would walk me up to his bed heart pounding for what I might find.

IMG_20150203_055813668But here is the twist…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. (You can read my post here: How to tell your son he’s going to have brain surgery without exploding into a million pieces.) 

Because for him what I saw as 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. 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, in me. Purple reminds me of the absolute power, the incomprehensible grace and God’s perfect plan that although is not always understandable but will always make us all the better for it.

Psalm 138:3 and 138:8 “In the day when I cried out, You answered me, And made me bold with strength in my soul.” “The Lord will perfect that which concerns me; Your mercy, O Lord, endures forever; Do not forsake the works of Your hands.”

blog chiariMy son Luke feels better than he has ever felt since his surgery. It breaks my heart how he must have suffered before being diagnosed, when we were told he was just dehydrated. Please help share and spread awareness about Arnold Chiari Malformation. Someone you may know and love could be suffering with this and not know. For more information on Chiari and how to help:

http://asap.org/index.php/disorders/chiari-malformation/

http://www.conquerchiari.org/index.html

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm

Disclaimer: These images and links are used for the sole purpose of awareness and information. I am not receiving any monetary gain.