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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How Covid Brought Healing

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Hi, it’s Stephanie! I want to start by saying NEVER in a million years did I think I would be starting a blog with my husband (like Troy, this is crazy right?) I’ll follow that up by also saying NEVER in a million years did I think I would be a special needs mama. In all honesty, that still feels weird saying. And it’s not that I didn’t think it was an impossible situation with every pregnancy, but I just really thought deep down that it wouldn’t be a part of our story. I truly mean it when I say a “part” of our story, because initially with Jett’s diagnosis it was all consuming. My mind went straight down the rabbit hole. Not only was I asking “why?” but I also had this overwhelming sense of guilt because I wanted my son to be different. I know this sounds terrible, but it was how I felt and I’m not trying to sugar coat it for you. I was struggling. 

Prior to the pandemic and Jett’s diagnosis, I was quickly becoming a nervous wreck in social settings. My insecurities assumed that everyone was wondering why Jett wasn’t holding his head up, or sitting, or crawling, or cooing… the list goes on. Clearly, these were all things I was struggling with, not the general population. I slowly began to withdraw and then covid hit. I was just as irritated about the shut down as everyone else, but as time passed I realized God had bigger plans for me and my relationship with Jett. (Quick side note: this might surprise many of you, but I had a really difficult time bonding with Jett. I absolutely loved him with every inch of me, but his early delays made it very hard for me to connect with him emotionally. Then add in all the postpartum hormones and I was a mess.)

Through all of the social distancing and lack of group gatherings, I finally felt this intense relief. Initially I thought this relief came when I was no longer striving to protect Jett from the outside world, feeling the need to explain why he wasn’t achieving milestones or why he needed eye patching or had trouble eating, etc. But in all honestly, God was showing me I was actually setting myself free. I was no longer feeling embarrassed or nervous about what others were thinking or saying. I stopped feeling like everyone was just staring at my son. I ultimately stopped feeling like Jett’s diagnosis was my fault. I was healing.

I vividly remember a moment of healing that took place one night while I was giving Jett a bath. He sat there, splashing the water and then suddenly locked eyes with me. The next moment he aggressively started to blow raspberries. All I could do was watch with tears running down my face while he laughed and continued to spit everywhere. When we were first referred to see a geneticist to begin Jett’s testing, Troy and I had to share an extensive family history with Bill the genetics counselor. He was so warm and welcoming, knowing how intimidating this whole process was. I remember him asking me, “does Jett blow raspberries?” and I felt my head slightly drop, I said “no.” He instantly perked up and looked at me and said, “You mean, not yet!” I wish he knew how much this simple statement meant to me. It has completely changed my outlook on Jett’s life. Time and time again I am being asked to record Jett’s abilities, and my favorite answer I now give is, “Not yet!” This answer reminds me of the hope I have in Christ, our Healer. It removes my insecurities and doubts and creates space for God to step into the picture and do what he does best.

“Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.”

Ephesians 3: 20-21

The healing that has taken place over the last year is nothing that could have happened if not for the isolation and stripping of outside influences. The song Defender puts my feelings into words best:

“When I thought I lost me

You knew where I left me

You reintroduced me to Your love

You picked up all my pieces

Put me back together

You are the defender of my heart”

God was doing just that. He was defending my heart in a way I never knew I needed. God has reminded me that CHAMP1 is not the whole story, but simply a part of it. Jett has brought a light to my life that only God knew I needed. He has brought purpose and healing. He really has reintroduced me to a love that only He can provide. How special it is to have a front row seat to all that God has in store for him.

Thank you so much for taking the time to hear more of our story! I try to be as raw and real as possible, hoping it makes others feel less alone in their journey. We are all doing our best and I’m so grateful we serve a God full of grace and redemption. Praying for each set of eyes that have read this, that you would create space for God to show His love like never before and bring healing.

2 Minutes

Two Minutes: Troy

“Two minutes” That is the answer that my two-year-old Cal has been giving me for the past year. This answer usually comes when I tell him that it is time for bed, or time to turn off a show. “Two minutes”. We have tried to explain to him that he doesn’t really know how long two minutes is. If he knew that it was only 120 seconds, he might be a little ticked off. We tell him that if he really understood time, he would ask for 10 or even 30 more minutes, but two minutes is all I ever hear, he just wants two more minutes.

Two more minutes to continue feeling the way he is feeling at that moment. All bundled up next to his Mimi, drinking a chocolate protein shake that Steph made him, watching the same episode of Scooby Doo for the millionth time, because in that moment he knows what to expect. In that moment, he feels safe, he feels at peace. It doesn’t matter how much longer this moment lasts, for Cali, it just has to last a little bit longer, “two minutes”.

I remember when we had no answers for Jett. I remember after every doctor’s appointment; Steph and I would drive home with so many more questions than answers. The car rides would almost be silent behind tear filled eyes and an overwhelming feeling of guilt. I don’t really know why we have these feelings that we do. I knew that there was nothing that I could have done to make anything easier in those moments and yet I still felt guilty. Guilty that I didn’t have more to say to Steph. I felt guilty that our world seemed to be crumbling before our very eyes and there was nothing that I could do or say that could comfort us. I remember thinking if we could only find answers, we would know what was happening and then we could start to be okay.

And then the answer came, and I was not okay. I was collecting eggs from a chicken coup when I got the call from Steph. (No, it’s not our chicken coup so don’t get too excited.) She was crying already and started to explain to me that Jett had CHAMP1. I told her that everything was going to be okay, even though I had no idea what was about to unfold and then we got off the phone. I just stood there and cried. Didn’t really know how to process the information and so I just cried. It was just me, a bunch of chickens, and one really mean rooster, crying.

I prayed for so many months that we would find out more answers to our questions and once we got them, I didn’t really want them. When Jett still wasn’t diagnosed yet, I was able to hang on to this belief that nothing was wrong with Jett, that maybe he was just really delayed because of ‘A’ ‘B’ and ‘C’ and he would eventually catch up. This diagnosis put that feeling to rest forever. After the diagnosis, I remember feeling like I lost something. I lost the vision that I had for my family. I lost the thought of my two sons playing sports together on the same teams growing up. I lost my vision and I wanted two minutes.

What I am learning is that my version of my story sucks. My version doesn’t actually have my family’s best interest in mind, because my version can only see the last two minutes. I am learning that God’s version is so much better than anything I could have ever dreamed of. The want I have for two more minutes is only because I do not know what the next two minutes will bring. The next two minutes will be part of God’s plan and they will be infinitely better than what I could have done on my own.

Philippians 4:4-7 “Rejoice in the Lord always; again, I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”