Happy 365 Days!

A year ago today on July 22nd our sweet Jettyboy was diagnosed with CHAMP1. I can still remember getting the phone call, then calling Troy and telling him I had no idea what this meant for us… literally because the doctor who called actually told us she didn’t know anything about it (HA!) My body can still recall all of those feelings of fear, doubt, grief and questioning “why.” Although those emotions still rear their head around corners occasionally, I am so grateful for the growth I have experienced and the faithfulness of God to show me just how magical this boy would make our life. 

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At the beginning of our journey, I often think of the story of the bleeding woman in Mark 5 who was in search of healing. Verse 27-28, “When she heard about Jesus, she came up behind him in the crowd and touched his cloak, because she thought, If I just touch his clothes, I will be healed.” When I read this I think of Disneyland before covid, where you could barely walk down main street without giving someone a flat tire. I imagine this woman, getting as close as she can to Jesus, stretching her arm through the thick of the crowd in hopes that even if just her fingertips, she would touch Jesus’ garment and be healed. She didn’t need to see him or feel his touch to believe that healing was going to take place. She knew that he didn’t even need to acknowledge her or lay eyes on her! But ultimately, Jesus knew she was there because he had felt his healing power leave his body. Verse 33 says, “Then the woman, knowing what had happened to her, came and fell at his feet and, trembling with fear, told him the whole truth.” I love how real and raw this woman’s emotions are. She was just healed after 12 years of suffering, but she had true fear and reverence for the Lord, and her faith was rewarded. 

If I am being honest, sometimes I grow weary in praying and hoping for Jett’s healing. There are times where I begin to believe this is just the way God made him and I am only tiring myself out believing that things can be different for him. Now, you’re probably thinking, “but that is the way God made him, isn’t it?” Yes, it is. But, I do believe God has greater plans for him. The enemy would love for me to just sit back and allow life to move forward without me driving and steering my faith and hoping for something greater. In those moments of self doubt or just pure exhaustion, I ask myself, “if not me, then who?” Who will kneel beside his bed at night while he sleeps and pray for God to allow him to speak? Who will go into his room when it’s empty and invite the Holy Spirit to cover this space with healing? Who will rejoice over him with songs of praise when he wants to cuddle on the couch after just waking up? We are waging war against the enemy who would love nothing more than for me to raise my white flag in surrender to what this world tells me life is supposed to be like for Jett. Instead, I’m choosing to work hard everyday, surrendering to God’s will and that includes believing in His ability to bring healing and restoration to Jett in whatever way He sees fit. And I’ll be truthful, because I’m not trying to glamorize this process… usually God’s answer looks SO much different than what I expected. But I promise, it is without a doubt, SO much better. Every time.

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“one thing remains the same and that is the never ending, all consuming love of Christ that He graciously pours out to us every single day”

My eyes are filling with tears as I sit and write this. Not out of sadness, but out of pure gratitude for the work God is doing not only in Jett’s life, but in mine. My foundation of faith has been rebuilt and tested over and over again the last 365 days since Jett’s diagnosis. I have been knocked down and stood back up countless times, but one thing remains the same and that is the never ending, all consuming love of Christ that He graciously pours out to us every single day, right where we are. If you’re in need of healing, ask Him for it. If you need financial help, ask Him for it. If you need to restore a relationship, ask Him for it. But when you ask, also believe. Mark 11:24 says, “Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.” This is where I have seen God move the most in my life, through the fervent prayers. This is where my relationship has been built, through the process of constantly communicating and seeking the will of God over Jett’s life and my own. And to circle around on my last thought in the previous paragraph, that is exactly why HIS answer to our prayers are so much better. He takes the time to work in us and align our thoughts with his, so when the answer does come we see the true heart of God in it. 

I really am just so grateful for you taking the time to read this. I am not a writer by any means, and I often tell Troy how much I hate writing, but the Lord has been working on my heart for this post over the last week so I just did a big brain dump! Phew. Again, we’re so grateful for your love and support. If you need any prayer we would love to come alongside you, so please reach out. We love answering questions or just talking life, so you can do that too! Have a great day!

If you’re reading this and have a relationship with God, these are some of the verses I pray over Jett and would love to get some warriors behind us!

“Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.” Isaiah 43:19

“LORD my God, I called to you for help, and you healed me.” Psalm 30:2

“‘But I will restore you to health and heal your wounds,’ declares the LORD…” Jeremiah 30:17

“And my God will meet all your needs according to the riches of his glory in Christ Jesus.” Philippians 4:19

“He gives power to the weak, and to those who have no might He increases strength…Those who wait on the LORD shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.” Isaiah 40:29,31

“Trust in the LORD with all your heart, and lean not on your own understanding. In all your ways submit to him, and he will make your paths straight. Do not be wise in your own eyes; fear the LORD and shun evil. This will bring health to your body and nourishment to your bones.” Proverbs 3:5-8

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