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

October 30, 2017October 30, 2017Leave a comment

Have 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.

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!

Blue Blessings

April 11, 20162 Comments

There are moments that happen in our lives that I like to refer to as blue blessings. They happen when we are really down and heavyhearted. They seem to come out of the blue and whisper that it’s going to be okay. Surprise us with their simplicity to touch our hearts and encourage us to keep going, and that somehow what we face has purpose and meaning.

It’s been just over a year since my son, Luke, had brain surgery for Chiari malformation. He has come so far and I think it’s given him a love and compassion for others in ways that continues to surprise me. I have had so many tell me how special he is and inspiring to them.

Recently, I learned that a coworker who had battled cancer before and beat it had recently found out it had returned. My heart broke for her. Luke decided to make a large card for her. He spent hours on it, drawing and coloring. He would not let me help in any way.

When he was done, we packaged it up and also sent with it, a prayer bear. I included a note explaining how Luke and I had prayed over it and when she hugged it close, we prayed she would feel our love and prayers of healing and comfort for her.

Lately, I have been discouraged. Luke has had some health issues come up that have burdened my heart with worry. Because he has an incurable brain condition, he will never have just a normal headache or just a typical stomach ache. As his mom, it will always cause me to wonder if it is something more. It will cause me to question if I am doing the right thing, making the right decision for him on how to treat it or what doctor we see.

So the sweet card that we received this past week from my coworker came out of the blue and the words she wrote at the end brought tears to my eyes and to my little guy’s as well. Sometimes we just need to know that there is a reason and purpose for the bad times we face. We need to be reminded that we make a difference, that we matter. Sometimes it comes to us as blue blessings.

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

March 3, 2016March 18, 20164 Comments

Mighty blog 2 I 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.

Might post 3

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?

Guest Post: Chiari’s Plan God’s Plan

September 28, 2015September 28, 2015Leave a comment

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.

Why Purple Sometimes Makes Me Cry

September 15, 2015September 15, 20156 Comments

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 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.

But 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.”

My 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?

January 24, 2015January 24, 20155 Comments

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.

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!”

Help For The Chronic Worrier and Some Updates

January 13, 2015January 13, 20154 Comments

Just over a week ago, I found myself spending a quiet evening at home with just me and my two kids. My husband was working and my stepson (my sweet bonus son) was at his mom’s. It was a very cold night and it seemed the heat was heaving and sighing, moaning and hissing trying to keep our house warm. So I lit a fire in the fireplace and we settled down to play a game of Sorry.

As we sat there playing, giggling and taking turns sending each other back to start the thought came to me that this is what family to me is all about. My daughter wasn’t worrying about her end of semester exams coming up the following week. My son wasn’t worrying about his frequent headaches and upcoming surgery. I wasn’t worried about getting to work the next day or what was going to be happening in the coming weeks. No. We were all in the present; in the moment. It was warm there. It was peaceful and relaxing there. It was happy there in that moment.

I can be a chronic worrier. When you worry, you tend to be inside of your head. A lot. That means that you may be sitting in the present but in your head, you are in the future of “what if” and “what might”. Your mind is caught in a vicious cycle of worry and what might happen if what if happens. I have learned that the best way to combat this is to practice mindfulness. Mindfulness is where you bring yourself out of the worry and out of your head and look around. You literally start pointing out things that surround you and switch your focus on them. For example, my drive to work is where I really worry. I worry about whatever is going on with my kids, my job, what some one said, etc. When I practice mindfulness, I stop worrying and think about how bright the sun is at that moment or how blue the sky is, etc…

I use the term “practice” because it sounds simple but it is something I have to work at over and over again because the worry keeps trying to take over. Being mindful helps us to stay focused on the present; focus on the moment you are living in not what’s to come and especially what has been. In His word, God tells us to not worry about tomorrow. “³⁴“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.” Matthew 6:34

Here is something that we all need to honestly take hold of and remember: God actually wants us to be happy and enjoy the life He has given us. He doesn’t want us to waste it on our past or worry. (Who would ever want to know Him if we are walking around worried and sad all the time.) Being mindful and staying in the present allows us to live out our potential, to be the best we can be-who we were created to be, moment to moment.

^“18Even so, I have noticed one thing, at least, that is good. It is good for people to eat, drink, and enjoy their work under the sun during the short life God has given them, and to accept their lot in life. ¹⁹And it is a good thing to receive wealth from God and the good health to enjoy it. To enjoy your work and accept your lot in life—this is indeed a gift from God. ²⁰God keeps such people so busy enjoying life that they take no time to brood over the past.” Ecclesiastes 5:18-20

Now on to some other things that are happening. I was so excited to share that I was approached by Pigeonhole Books to do a blog interview for their resource page several months ago. They chose my blog to kick off the new year! Here is a link to that interview about me, my site and where I want to be in all of this. Check it out and show them some love! http://pigeonholebooks.com/2015/01/05/blogger-interview-donna-mott/

We also celebrated a big birthday in our family recently! Our beautiful girl, my oldest, turned sixteen! Where has the time gone?!

I would like to thank you all and ask that you please continue to pray for our son, my youngest, Luke. His chiari surgery is scheduled for February 2. Our family has a lot coming up but God has been so amazing and faithful. I will be sharing more about that later……

When You are So Overwhelmed, There are No Words

December 11, 20142 Comments

I haven’t posted in a while. My emotions have been so overwhelming that I literally have had no words to describe them. Which I’m pretty sure is bad for a writer. Words, for me, have always been an emotional outlet; expressing and processing my feelings; a way to scream while remaining silent. Lately I’ve been drowning in fear, worry, shock, determination, and focus with no way to get an extra breath except…….One.

Romans 8:26 “And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words.” (NLT)

It is so much comfort to me that as a child of God, I don’t have to find the words. I don’t have to articulate the storm inside my heart, the raging in my mind. My Heavenly Father knows.

He is my comforter. 2 Corinthians 1:3 “All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort.”

He is my strength and my help. Psalms 28:7 “The LORD is my strength and shield. I trust him with all my heart. He helps me, and my heart is filled with joy. I burst out in songs of thanksgiving.”

He is my hope. Psalms 71:5 “O Lord, you alone are my hope. I’ve trusted you, O LORD, from childhood.”

He is my rock. 1 Samuel 2:2 “No one is holy like the Lord! There is no one besides you; there is no Rock like our God.”

My previous post was about my son. The tests results have come in and we met with the neurosurgeon last week and my little guy will be having decompression brain surgery at the end of January for his chiari malformation. As I have said before, I am so grateful that this has been found while he is young and has not had to suffer, but I have also, as a mom grieved for my son. My heart has ached for what he is facing. I have cried out of fear of the horrible spiral of “what ifs” that could happen.

I don’t want him to go through this. I am scared about so many things but it has been during this time that I have felt God’s closeness more than ever before; His presence touching every aspect of our life; our Comforter, our Strength, our Help, our Hope, our Rock.

It Is Well: How God is Teaching Me About His Glory Through My Son

November 13, 2014Leave a comment

My family and I have been going through a very scary time with my youngest son. He has had some medical symptoms that have seemed to get worse. We were told a year ago he needed rest and hydration when he would wake up so weak he could barely lift a cup or spoon. The “spells” would only last a day or so and then he would go months without another. In between these times he has had headaches and dizziness but these too have been sporadic.

His most recent spell was just over a month ago. The pediatrician did a full blood panel workup. All of his tests came back normal so she referred him to a neurologist, who ordered an MRI. The next thing I know, I get a call that my 10 year old is being referred to a pediatric neurosurgeon for evaluation of possible brain surgery. The diagnosis is chiari malformation I. Here is a link with info about this abnormality to save you the trouble of googling it: http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm . He saw the neurosurgeon this past week and I will get to that later in this post.

The myriad of emotions that we all experienced during the days of waiting for that appointment are nearly indescribable. My little guy was actually relieved that there was an explanation for the way he had been feeling. For me, I was terrified of what he might have to endure and so unbelievably grateful that it was found early all at the same time! I posted, shared, text, and emailed asking; begging for prayer for my son! God created my son and my prayers was that He would press His divine knowledge into that surgeon to know what was best for him.

Everyone kept saying “I’ll be praying for him and your family”. Every time I heard that reply I would nod gratefully or post thank yous and please dos, seemingly calm but inside I was screaming! YES PRAY PRAY PRAY FOR MY SON! Don’t just say it because it is a challenging difficult time for us and you don’t know what to say. This is my son; this is my baby. This is something that has no cure. This is something he will have to live with; an invisible illness that to the outside world may seem completely made up. This is an absolute significant diagnosis that breaks my heart for him! So please please please do not carelessly fling out the most overused religious phrase known today “I’ll be praying for him” THIS IS MY LIFE, THIS IS MY SON AND I’M BEGGING YOU TO MEAN IT! PRAY WITHOUT CEASING!

During this time I would go to work and alternate between inward anxious thought spirals and outward quiet tears. I love the fact that I can listen to music while working. I would play songs of comfort and one song kept showing up in my mind, in my heart, and deeply in my spirit…. “It Is Well With My Soul” by Horatio Spafford. (The story behind this song is astounding.) The words began to minister to me. I added a new prayer to my initial prayerful cries to God for my son. I began praying that I would bring glory to Him even during this overwhelming, frightening experience, praying that even my fear would still bring Him glory. I Corinthians 10:31 “So whether you eat or drink, or whatever you do, do it all for the glory of God.”

It started to have an effect on me. I began to feel more at peace in the midst of fear and calm in the midst of confusion as I slowly began to accept whatever we would face with this deeply heartfelt knowledge that God really loved my sweet boy and no matter what it would be okay.

Wednesday came and I found myself staring into the kind, wise eyes of the surgeon. He said that surgery is to only restore cerebral flow if it is impeded by this condition. Based on the MRI, there seemed to be enough space for cerebral flow and surgery most likely will not be needed at this time. He ordered a spinal MRI and flow studies to be done next week to confirm this. This is so incredibly reassuring and solidifies that those prayers from all of us have already begun to work in my son. And I will say this without any hesitation what so ever and scream it: TO GOD BE THE GLORY! And yes please please please keep those prayers coming!