Here are 20 songs (in no particular order) that have been speaking to my heart during this journey with Chiari Malformation.
1. Help is On The Way (Maybe Midnight) Tobymac
This song is my anthem right now! This song is such a beautiful reminder that God is always with us. In the unknown, God knows it and is continuing to make a way.
“Sometimes it’s days, sometimes it’s years But He’s in the darkness, He’s in the cold. Just like the mornin’ He always shows.”
2. Whatever Comes (Rend Collective)
When I was still in Spokane, a doctor told me I had “Cerebellar tonsillar ectopia extending 5mm below the foramen magnum.” The doctor told me it was a lifelong condition and that I should go home to my local doctors to come up with a plan. I had no understanding of what was happening or what would come. I remember going back to my room in student housing and praying for guidance and peace. This song came to me and was a reminder that whatever was coming God would walk through it with me. I wrote it out and hung it on my wall as a reminder.
Two weeks later I was in Vancouver sitting with my mom and doctor discussing our next steps. I had no idea what was to come. It’s been a lot of heartache, stress, waiting, redirections and answered prayers. Through it all God has been my source of constant hope and peace.
“Lord, whatever comes, Make me steadfast, make me rooted A cedar planted firm, deeply grounded in Your goodness. Whatever comes”
3. Hands of The Potter (Casting Crowns)
This song is so beautiful and has been on my playlist long before I was walking this path with Chiari. Now it feels more personal. I know that my life is in God’s hands. I’m the clay and He is the potter. He is using this trial (Chiari Malformation) to mold and shape me. I’m learning to see and count small blessings. I have seen God’s hands move in the big things and the small details. I know God will continue to use Chiari to shape and mold me into who He wants me to be. He will continue the work He started in me.
“My world is spinning, my life seems so out of control. Nailed scarred hands tell the story of love that will never let go of me. Through the sunshine or rain, I know where my hope is found. What You started in me I know You will complete from the inside out”
4. Magnify (We Are Messengers)
I remember when my family and I were at Winter Jam and we first heard this song by We Are Messengers. It was so beautiful and spoke to my heart. Feeling like so much has been lost, like college and living in Spokane with my sister, my job and my community, has been very hard. Also simple things like the fact that I run out of energy more quickly than I ever have. Most mornings I wake up tired. I often feel like I’m watching all my friends and peers participate in life while I just watch. I think God has given me this time to really think about Him and His character in light of everything that is going on. There’s moments when (especially before I found a specialist) everything seemed bleak.
I found myself just thinking about all the negatives and worst case scenarios. I realized that I needed to change the way I was looking at myself and this situation. I knew that I was not seeing the bigger picture. There’s so much in life than what we see, but God see it. He sees the full picture. In all of this craziness surrounding my diagnosis of Chiari Malformation, God has been faithful. Throughout everything changing and being taken away, God has remained constant. When I took my thoughts of myself and redirected them towards God ever changed.
“My sight is incomplete and I made you look small I’ve been staring at my problems for way too long Realign where my hope is set Until you’re all that’s left”
5. Even Then (Micah Tyler)
God has been with me every step of the way. From the very beginning before I even had symptoms and when the doctors didn’t know what was happening. He will continue to be with me and guide me.
“Even when it feels like my world is shaken Even when I’ve had all that I can take I know You never let me go And even when the waters won’t stop rising Even when I’m caught in the dead of a night I know, No matter how it ends. You’re with me even then”
6. Shoulders (for King & Country)
7. Why God (Austin French)
I was heart broken when I came home from school. I felt like everything was going so well. I moved to Spokane, started school, made friends. I loved the life and community I was building. Then I was diagnosed with Chiari Malformation and had to move back home to deal with it. I felt like I had the rug pulled out from under me. I felt very confused about why God would send me there and help establish everything only to have this happen. I still don’t know all the reasons behind this, but I know God will continue to walk me through this.
“I don’t understand, But I understand Why God, I need You. It’s, why God, I run to Your arms Over and over again It’s, why God, I cling to Your love And hold on for dear life And I find, You are right by my side”
8. Truth Be Told (Matthew West)
Whenever anyone ask me how I am, I always say I’m fine. I just don’t know what to say or where to begin. I don’t want to stand and list all my crazy symptoms or all the run around between doctors. I worry I will overwhelm them with information they don’t need or want. Most of the time though, I’m worried I’ll cry and I don’t want to fall apart.
“I say I’m fine, yeah I’m fine oh I’m fine, hey I’m fine but I’m not I’m broken And when it’s out of control I say it’s under control but it’s not And you know it”
9. Control (Tenth Avenue North)
When we got the appointment at UW I was so excited. I thought they were going to come up with a treatment plan and help me. Instead the surgeon there said that Chiari was absolutely not causing my symptoms and that according to all the scans and test I’m fine. Nothing should be holding me back from living my life. He made it very clear to me that he thought I had MS and to go to a specialist. I remember crying that night in the hotel room with my mom. I felt so defeated and worn out. She told me that this was something out of our control. That I needed to place everything in God’s hands and to wait on Him because He would hear me.
“I’ve had plans Shattered and broken Things I have hoped in Fall through my hands You have plans To redeem and restore me You’re behind and before me Oh, help me believe”
10. Oh, My Soul (Casting Crowns)
Even in this valley God is still with me. His promises are true and I know there will come a day when He makes beauty from these ashes. He is there for me and he is there for you too.
‘Cause this is the valley And even now He is breathing on Your dry bones And there will be dancing There will be beauty where beauty was ash and stone This much I know
11. Only Water (Brandon Heath)
This song has been so calming and comforting.
“And it washes over me Like a single river stone Changes everything But has no power on its own It’s only water”
12. Dawn (Rebecca St. James)
God’s mercies are new every morning. I read a Tolkien quote that said, “you can only come to the morning through the shadows.” No matter how dark the night is God will bring the dawn.
“Even in the darkness, even when it’s hardest You are faithful and You bring the dawn On every mountain, I’ll sing it even louder You are faithful and You bring the dawn”
13. Heaven Help Me (Zach Williams)
God has been my source of constant help and hope. I could not be walking this road without Him. He has been been paving the way before me. Every time I think I’ve hit the wall or that I’ve reached the end of my strength He’s there.
“Help me, help me’ Cause I can’t walk this road alone And I can’t do this on my own Tell me, tell me I just need to hear You say That everything will be okay”
14. Dream Again (Matthew West)
In the beginning of this journey, when a doctor told me I had a lifelong, rare brain condition and would most likely need surgery, it felt like a punch to the gut. I had the rug pulled out from under me. I felt like all my dreams and hopes for my future were just ripped away from me without warning. One doctor told me that I would live the rest of my life with a ton of restrictions. Not the life I want. I’m supposed to have adventures and go oversees. Not having to constantly be aware of my “illness”. Instead I was being told that my life would change because of Chiari. There was this period of time where I had tons of questions about my future, but no doctor was able to answer any of them.
Through countless prayers and begging God to bring peace, I was reminded of Isaiah 55:8-9,“For my thoughts are not your thoughts, neither are your ways my ways”, declares the Lord. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts higher than your thoughts.”
My way and all my plans are nothing compared to God’s. I don’t know the full purpose of me being diagnosed with Chiari Malformation and having all my plans thrown off course and my life changed, I do know that God still he plans for me. I’m having to surrender my dreams to God and place them in His hands. Sometimes it feels like a daily thing I have to remind myself, God’s plan are more than I can ever imagine.
“Your lungs are still breathing Your heart is still beating The end’s where the future begins Open your eyes Just open your eyes And dream again”
15. Fragile Heart (Leanna Crawford)
The worst of it is not over yet…, but I am holding on to the promise that the Lord is close to the broken hearted and He heals their wounds. It has been a stressful week with preparing for brain surgery. I’m feeling the weight of what’s to come and I am overwhelmed, but I know God will continue to hold my heart.
“When a fragile heart finds healing hands The places numbed by pain start to feel again Where you fell apart becomes where you begin When a fragile heart finds healing hands”
16. Out of My Hands (Jeremy Camp)
Our trip was almost cancelled yesterday because a key piece of paperwork hadn’t been approved yet. We decided to go forward in faith and trust God that it would be okay. He has already brought so many things together in ways we never thought of. The insurance rep called while we were on the last flight and confirmed, although we could hardly hear her over the plane noise, that the urgent missing pre-op piece had been approved. Praise God! There has been so much stress and confusion over the last few days, on top of the fear of the unknown. All the what if’s are heavy weights, but they are not mine alone. God has continued to show me clearly through all this chaos that I have no control over any of it. Sometimes, the thought of not having control is it’s own stress, but right now in this time, it’s bringing me to so much peace. To know that it is completely out of my hands, but knowing with my whole heart it’s in God’s loving hands.
“Every day this never-ending pressure Tries to take its claim over my heart I have tried to hold it all together But time and time again I fall apart But that’s where I find my life was never mine at all You are the one inside always in control”
17. Just Be Held (Casting Crowns)
I could never have come this far without God bringing everything together. In the mess of confusion He brought clarity. He brought all the broken and missing pieces together. In the middle of the chaos He’s there, standing in the storm with me, giving me rest.
“Lift your hands, lift your eyes In the storm is where you’ll find Me And where you are, I’ll hold your heart I’ll hold your heart Come to Me, find your rest In the arms of the God who won’t let go”
18. Let There Be Light (Steph Macleod)
In the middle of this storm God is with me surrounding me with His love. He will lead me out of this storm. Today my head, neck and body hurt, and a ton of other symptoms. I’m thinking about having brain surgery on Tuesday and I have a storm of emotions. Lord bring me peace.
“When I sail the lonely deep When the midnight watch I keep I stand amazed as stars on the billows gleam And though I know a storm is rising High above the dark horizon I know oh Lord, I know you are here with me”
19. There Was Jesus (Zach Williams)
Through everything that has happened I can clearly look back and see that Jesus was there with me. In all this hardship He has always been walking with me. I know with all my heart that He will always be there.
“In the waiting, in the searching In the healing and the hurting Like a blessing buried in the broken pieces Every minute, every moment Where I’ve been and where I’m going Even when I didn’t know it or couldn’t see it There was Jesus”
20. Psalm 139 (MercyMe)
Psalm 139 has always been one of my favorite psalms. This morning (March 23 the day of surgery) I am holding it close to my heart. The Lord has perfect knowledge of me and my heart. He is always there no matter where I go, there is no that He is not there also. He knows my heart and all my anxieties.
“You saw me before I was born. Every day of my life was recorded in your book. Every day was laid out before a single day had passed.