Faith is a daily execution of one baby step after another believing in the unseen and the unknown. So for my family, we are exactly on that adventure through a dark forest without a flashlight and unable to see what is ahead. Yes, I said, “adventure” because it is all about perspective. Walking out a medical journey with my children isn’t something I ever expected. You see I have had to re-adjust my dreams for them and their future. But that re-adjustment came last after the acceptance of their new diagnosed limitations. Accepting my children’s medical diagnosis felt like what I imagine drowning and falling off a cliff at the same time would. In that moment you are trying to suck the air into your lungs and instead you are taking in water as you feel yourself falling into an abyss of despair. I have wrestled with God quite a few times since that fateful day the doctor hurled those hateful and fatal words our way. I have been angry, self-reliant, and independent of my heavenly Father. I have found myself standing in the middle of grief alone. I chose it.
Alone. I built a fortress around my stony heart instead of putting my armor on. It got me absolutely nowhere. I felt dizzy and the ground beneath me shifting sand. I have been parenting on a tight rope trying to find a balance between over-loving and discipline, grace and consequence, doctors and living in the moment. Sometimes I feel like a racehorse at the gate, digging my hooves madly into the dirt, waiting, waiting for someone to open the gate and let me run across the finish line. At the finish line would be the answers to all of the questions that this medical journey continues to uncover. In Proverbs 27:17 it says, “As iron sharpens iron, so one man sharpens another.” It is on the road to seeking and searching that we sharpen one another through fellowship and prayer. And let me tell you without God and prayer I would be face down in the mud.
God is good and he is a loving Father. We cannot possibly lean on our own understanding. His ways are not our ways.
I do believe this is truth but I still have to remind myself daily. When you have children walking out a medical journey you celebrate the small wins and most importantly, life. It took time to wrap my mind around God’s ways not being like mine. It also took a great deal of humility to stop trying to understand the purpose in all of this madness that suddenly invaded “my” plans for my children. Initially I had to choose to trust that God is good. But as life happens along with wisdom and revelation being poured into your heart trust becomes easier.
One of the songs that penetrated my heart near the beginning of our journey was:
“Trust in You” by Lauren Daigle. “Letting go of every single dream. I lay each one down at your feet. Every moment of my wandering never changes what you see.” “I’ve tried my best to win this war I confess. My hands are weary. I need your rest. Mighty Warrior, king of the fight, no matter what I face, you’re by my side.” The chorus is my favorite part: “When you don’t move the mountains, I’m needing you to move. When you don’t part the waters I wish I could walk through. When you don’t give the answers as I cry out to you, I will trust in you.”
I started a habit with a friend of mine years ago and that was to spend time at the beginning of the New Year in prayer and listening for the Holy Spirit to give me a word, song or a scripture that I could hold onto for that year. I didn’t always get it that very day. Sometimes the word would reveal itself repeatedly over the course of several days or weeks. I would wait until I was certain that the word was meant for me and then I would ask God to show me what he wanted me to see and what he wanted me to learn. In 2013 I kept hearing the word ABIDE and so I did just that. I simplified life and said no often and entered into a season of rest. 2014 brought JOY. I learned what it was like to fully embrace the joy of the Lord even in the midst of struggle. 2015 brought STRENGTH. I needed to understand how to lean in on my Father in heaven and rest in His strength as that year ended with a hard medical diagnosis of my firstborn son. 2016 brought an entire scripture to my heart, Joshua 1:9, “Have I not commanded you? Be STRONG and COURAGEOUS. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” In April of 2016 my second and last son was diagnosed with the same brain disease as his brother just not quite as severe. I keep reminding myself that with God all things are possible. 2017 has brought the word LISTEN and believe it or not it feels like the hardest word to embrace so far. I almost didn’t want to type it or put it out there because now it holds me accountable but I am choosing to “listen” even when it is uncomfortable and not easy. I don’t want to mislead you to think that I am always on top or always hopeful. This is the hardest thing I have ever done. Some days I can barely breathe. It is a daily dying to the enemy’s plan to draw me into a spirit of despair. It is a physical and mental choice to choose hope and to move towards Jesus. Sometimes I scream and shake my fist at the heavens then fall to my feet in a puddle of tears. But God knows my heart and yours and He can handle that. He stretches my faith and when it all seems more than I can bear and I have nowhere else to go but to draw near to Him then He is glorified in the journey. The Word of God fills me with hope.
As a parent you have to make a choice for your children, you can give up or fight. I am here to fight and to stand on hope. The definition of hope is: the feeling that what is wanted can be had or that events will turn out for the best. Romans 8:24-27 in the English Standard Version says, “For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience. Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God.”
The Irish word for hope is “dochas,” and it means that you are bringing faith to the future. The Irish word conjures up a sense of trust, belief, confidence and optimism. After many sleepless nights, groanings of my own, worn out knees and much too much weeping I have been given hope. Hope in God alone. He reveals himself through scripture time and time again. God reveals himself through the hands and feet and the love of friends that are willing to roll up their sleeves and dig deep with me when life is messy. He has sent loved ones into the dark with me wielding their swords and the light of Christ has shown up every time, without fail, without ceasing. Now do we have answers? No. We may never have answers for our children. I am learning to be okay with that most of the time. Sometimes I feel the weight of every hour of every day and carrying it around is hard. But it is never without hope.
It is intriguing to me how God walked me through how to ABIDE in Him so he could lead me into a season of JOY, so that I could learn how to lean on His STRENGTH and be STRONG and COURAGEOUS through the hardest season of my life so He could prepare me to LISTEN to His truth. And through all of this I have had to trust Him and He has stretched my faith and given me hope for the future. I have learned to live life in the moment, fully engaged and present. Be encouraged to hold on to your faith when life gets messy. Be courageous. Being courageous means that we press on despite our fear. Remember that God is good. He is our comforter, keeper, provider and present hope in the time of trouble.
And finally, remember to live in the moment. When you have a conversation with someone, look directly in their eyes and listen, really listen. Put your phone down. Go outside and play with your kids, the dishes can wait. Go slow into your good morning. Say no without explanation. Eat a popsicle or a poptart. Forgive often. Be the first one to say you are sorry for that takes courage. Own your stuff. Communicate. Drink in the sunshine. Let your guard down with the ones you love. Life is too short to build fortresses around stony hearts. And most importantly of all let us all walk out this adventure of faith with our armor on.