Unworthy: Does Anyone Else Feel Like I Do?

Today was the first Easter Sunday I have not been able to physically be in church. I’ve cried a lot this morning. And prayed. And worshiped. And thanked God for loving me anyway. And cried. And prayed. And worshiped. Well, you get the picture. It is my sad cycle. It is the swirling of overwhelming emotion and persistent thought that sometimes makes it way straight to my heart. I am unworthy. I’m not just talking about being unworthy to be a child of God. I’m talking about unworthy to be a mom, a wife, a woman….a person. Worthless.

I’ve had an invisible illness for nearly six years but the doctors didn’t know what it was. After a year and a half, I didn’t know it wasn’t gone completely, just in remission until I relapsed just over a year ago. This time, I was lucky enough to get a diagnosis. Spontaneous Mal de Debarquement Syndrome or MdDS for short.  MdDS has spread it’s ugly tentacles into every single corner of my life. Because of it, I wrestle with severe anxiety when my symptoms are high.

Being confined at home, not able to be free and independent as I’ve been most of my adult life has settled in my spirit as a dark bleakness that at times, such as today, has made me feel smothered with worthlessness.

So I tuned in to church live online. The song “Is He Worthy?” was playing, a song based on Revelations 5.

But no one in heaven or on earth or under the earth was able to open the scroll and read it. Then I began to weep bitterly because no one was found worthy to open the scroll and read it. But one of the twenty-four elders said to me, “Stop weeping! Look, the Lion of the tribe of Judah, the heir to David’s throne, has won the victory. He is worthy to open the scroll and its seven seals.” Revelations 5:3-5

And tears began to run down my cheeks. Because when you really think about it, we are all unworthy. There is no one worthy. But today, the very day we celebrate the most holy of days, the Resurrection of Jesus is a reminder that He is! And His spirit lives in me.

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Do you battle with feeling unworthy like I do? Worthless? Less than? Because of ______. You can fill in the blanks with so many things… Sickness. Sin. Shame. Mistakes. Weakness. Pride. Fear. We all have the dark bleakness of our pasts, our insecurities, our pain, our inadequacy waiting to smother us. BUT Christ won the victory and His spirit lives in us if we just accept and believe. He is the light and in Him there is no darkness. We are free to let go of that darkness and make room for everything He stood for like compassion, kindness, acceptance, grace and love.

In Him I am whole. I matter. I am worthy.

 

 

 

 

 

 

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Small is Big: What my son taught me about faith and compassion.

donnaandluke-1.jpgHave you ever learned that someone is facing a difficult time and just wanted to do something, say something, anything to ease the pain or bring a sliver of comfort? Often times, we truly feel helpless. Wanting to form words into a perfect sentence that will help them immediately feel better but the only thing that comes out is abject silence, because your mind is suddenly empty of any and all words. However, I have been shown first hand that there is so much we can do, no matter how small it seems.

When my son, Luke, was diagnosed with Chiari Malformation at age 10, our world flipped upside down. I was consumed and twisted with worry. Worried about his impending brain surgery. Worried about him being scared. Worried about what this meant for our future.

During this time, he was given a knitted prayer shawl made by a precious local ladies fellowship church group. Later, he was also given a prayer bear by a sweet friend of mine. His bear was placed at the right corner head of his bed and was there for almost 2 years. His prayer shawl went with us to the hospital and brought so much comfort to him. He told me he could feel all the prayers that had been prayed over it and love that had gone into it. That comfort and peace he got from a small caring gesture spilled over and brought unspeakable comfort to this mommy’s heart through surgery and the months of recovery that followed. DSC_0987

Nearly a year after his surgery, my co-worker was battling cancer. Luke and I wanted to reach out to her, to give her comfort, but in all honesty I simply CANNOT knit. So we decided to send her a prayer bear. Luke picked out the softest one he could find, just the perfect size to hug. We prayed over it, calling her by name and asking that it bring comfort to her as it did Luke. You can read more about this story published on The Mighty.

After that, we decided we could share love and comfort in a very small way through giving prayer bears. To start off, Luke sold some of his toys for donations. Since that first bear, we have given nearly 30 bears in just over a year to others who are sick or hurting, most go to children with Chiari like Luke and other conditions. It has been such an honor to be entrusted by these parents to pray for their precious children! And Luke always writes a card to each person, a kind message that he feels each one needs to hear.

And the sweet spring beauty that has blossomed from his painful surgical winter has been the most precious to me. Through the bears and prayers, I’ve seen my son’s faith and love flame into a burning compassion for others that has spread into all areas of his life. He is the first to meet and befriend others in new settings. He is kind to everyone and sees everyone as a friend. Whenever we are out, he greets strangers with a smile in passing in the grocery store or running errands and tells them he hopes they are having a great day, holds the door for them or helps them unload their cart.

This has taught me so much about the little opportunities we have each and every day. We can be consumed inwardly with ourselves and our struggles, (something of which I am profoundly guilty) or we can look outside of ourselves for small opportunities to share a moment of love.

Thank you my sweet boy for showing me that small things become big when love is in it! Chiari Card

 

 

 

 

 

 

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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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.