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.

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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.

How Do You Tell Your Son He’s Going to Have Brain Surgery Without Exploding Into a Million Pieces?

Luke meeting his baby cousin last year.

Luke meeting his baby cousin last year.

The house is quiet, really quiet. Every one is sleeping in on this rainy Saturday morning….everyone except me. I don’t feel like I’ve really slept since October. Since my son, Luke (I affectionately call him buddy) was diagnosed with chiari malformation. Words like “incurable”, “brain surgery”, and “severe pain” seem to be bouncing around as soon as my head hits the pillow, along with slight shock and disbelief. Wow! How did we get here?

I keep thinking back to the day when we learned Luke was going to have brain surgery….I got the call while Luke and I were riding home from another appointment. I remember we were singing and laughing when the neurosurgeon’s office called and told me that his test showed a significant flow reduction and we needed to come in and get him scheduled for decompression surgery.
My mind began to reel. My breath caught in my throat. I guess the shock of it all kept me from bursting into tears. I robotically went through the motions of scheduling the appointment but my knuckles were white from gripping the steering wheel so tightly. I turned to my handsome little man next to me. How do you tell your child that they need brain surgery without exploding into a million pieces? I sent a prayer for words of wisdom and began to calmly explain to him what was happening.

“Luke, do you remember how we have prayed and prayed that the surgeon would have God’s wisdom in knowing what is best for you? Well, God has answered our prayers Buddy.” He looked at me briefly as I saw understanding creep into his blue eyes. “He thinks I need surgery, right?” “Yes buddy.” He immediately burst into tears as that understanding was replaced by fear. “Luke, it’s ok to be scared and worried and cry. You might see mommy cry too, but we are also going to thank God for answering our prayers. It may not be the answer we want but I know He is going to take care of you and guide that surgeon’s hand. We are going to get you through it one step at a time and then we are going to praise and thank God and give Him the glory for answering our prayers and being with you through it all.” He slowly nodded as I watched him brush the back of his hand over his eyes trying to fight back the fear and the tears.

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When we got home, instead of turning on the TV, he ran straight for his room. Trailing behind him, I walked in to see him drop to his knees by his bed, clasping his hands in prayer crying. He was saying something over and over but I couldn’t understand so I went closer and sat next to him. “Thank you. Thank you.” He was whispering between gasps and tears. He then reached around to the back of his head with his small hands and began to pray and beg God to give him strength to make it through. It was one of the most precious and heartbreaking moments I have ever known. I let the tears fall quietly down my face as I prayed beside him and let him pour out his heart to his Heavenly Father. Oh!! The strength and faith in that little boy was astounding! I briefly thought of the verse in Matthew 18:4, “So anyone who becomes as humble as this little child is the greatest in the Kingdom of Heaven.

I gently pulled him up and into my arms. Drawing all my strength I said, “Luke, like I said before it’s ok to be scared and cry, but let’s wait until it’s time. You are not having surgery today or next week. We are going to enjoy the holidays and spending time together with family and we are going to pray until then. He has been with us so far and He will continue with us every step of the way. Let’s worry when the time comes.”

Well that time is now fast approaching and in a week my little guy will be going in for surgery. I am having a hard time with it. As a Christian mother I know that God is honestly truly with us. I have never felt His presence more than I have since all of this started; felt a peace in my spirit that I can’t explain. (Philippians 4:7 “Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.”)

But as Luke’s mommy, I am heartsick and terrified. My worries and fear seem to sit on my shoulder and threaten to drown me. I honestly do not know what I would do if I didn’t have the Lord giving me strength. My emotions are all over the place. And my sweet little Luke;  I can’t hug him enough. I can’t kiss his head enough. I can’t thank God enough for giving me the unspeakable honor of being that little guy’s mom. Of having the honor of comforting him, holding him and guiding him through this life.

There is that peace again, stirring up in soul, creeping up into my spirit and touching every corner of my heart. I will allow God to continue to guide me because He is allowing me to guide Luke. And I whisper just like he did between gasps and tears, “Thank you! Thank you!”

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