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.
Finding Joy with Jett 