Maddox’s Journey

Reflection Post: Receiving Maddox’s CF Diagnosis


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In my previous post I mentioned that “in time” I may write about the initial heartache, grief, and overcoming of receiving Maddox’s CF diagnosis. I guess this is the “time”. I was recently going through a journal that I keep and saw that my last journal entry was on June 8, only 6 days before Maddox made his surprise appearance. When I looked closer I realized it was a journal entry reflecting on the day we found out about Maddox’s CF diagnosis. This was the first time I was able to sit down and write about this since receiving the news. Unbelievable. It’s as if God knew my heart needed to both document and emotionally process this day – just a handful of days before He was going to send me out on my next venture. 

I decided I wanted to share it with all of you here. This blog continues to be my living journal and is both therapeutic and a place of memorialization for me. I joke that thousands of people are reading my diary. And yes, I said thousands – the blog site statistics don’t lie. There are so many of you keeping up and reading these posts – it’s absolutely astonishing and unbelievably humbling. 

The rest of this blog post is a word for word copy of what was in my journal from June 8.  It recounts my heart from that day and days following. Perhaps as you’re reading this, you can pinpoint a similar day or time in your own life. A day when you recieved news that flipped your world upside down or made your heart feel like it weighed a hundred pounds in your chest. I pray some of my words help you feel heard, give you some rest and encouragement, and remind you that God is still good. 

June 8, 2023 

February 13, 2023 was the day Adam and I found out our sweet baby had cystic fibrosis at only 18 weeks in my womb. We’ve never felt so crushed in spirit. I sobbed (so hard in fact that I burst a blood vessel under my eye… you can still see it) and Adam cried and yelled out in deep, deep anger. We were empty and defeated. Life felt unfair — and even though God felt distant, Adam held my hands in that moment and prayed “Jesus, you’re in control. We trust you.” I still thank God Adam had the strength in this moment to be obedient and turn to God. My weak, mama’s heart sure didn’t. 

For hours after we were surrounded by family and tissues. There were words of sorrow, encouragement, and reassurance. Jesus, in this moment, immediately reminded us of the army we had surrounding us. 

That following week was the hardest of my life. I’d never felt such deep sadness. I felt like I was grieving — grieving an expectation, grieving health, grieving my pregnancy journey. I slowly told friends and family when my heart was ready. I was downcast by the sorrow-filled responses and appreciated the ones that were positive; that said I was just the mama Maddox needed for these extra layers of care he would need. That’s what I kept telling myself, and Adam continued to remind me “how amazing is it that God trusts us with this child? This child who just needs more.” Adam was my rock that week. I cried out to Jesus in a meek voice here and there, but he was grounded and stead and prayed over us consistently and continually amidst his own grieving. I always knew he would be an incredible father, but during this week I saw that he was going to be a relentless father — a father who relentlessly loves and prayers — whose faith and spiritual leadership guide me and our son. 

For weeks following I asked for prayers of peace and strength. I leaned on family and friends. I cried to Jesus. And I did a lot of research on CF, to understand what it may look like for Maddox and our family and mostly how I could be the very best mom to this little boy. Adam and I took a long trip to New Hampshire where we got massages, nice dinners, and strolled downtown Portsmouth. It was a time of rest. We did a lot of praying and reflecting. God was giving us more and more peace and strength every day — I could feel him covering us with it. I was grateful. 

On March 4, I posted Maddox’s diagnosis on social media. The outpouring of love and support was overwhelming and humbling. That day was a good day. We built his crib with the strength we gained and I started doing “normal” pregnancy things again instead of avoiding them. I still wanted all of the little joys — the nursery preparation, the new clothes, the week-by-week belly bump pictures. God was truly shielding us at this time. I remember going to church and during worship, closing my eyes and seeing Jesus with his arms around Adam and I — wrapped in his veil of peace. Despite the storm in my heart and around me, God truly was providing a heavenly amount of joy, peace, and strength. I was even helping and comforting others around me with the news of Maddox.

The days ebbed and flowed, but Jesus’ provision was constant. He remained an ever-flowing fountain of grace. I started grappling with the fact that I knew our God was a miracle-working God, but also that He is a God who knows the plans He has for us. I needed to both trust that he absolutely could heal my baby, but also trust that whatever He did, even if it wasn’t healing, was part of His plan for Maddox’s and our lives. This was tough. 

Adam and I prayed over this a lot. We still do. We tend to pray deep and bold prayers declaring healing over Maddox then we follow with prayers of surrender, trust, and obedience of God’s plan despite it all. 

6 responses to “Reflection Post: Receiving Maddox’s CF Diagnosis”

  1. What an amazing testimony to God’s faithfulness in your journey. I have been leading a study of Bridges’ book Trusting God, and YOU are living it! I plan to read this to the class this week.

    I didn’t respond to your last post which was amazing in a different way. I knew nothing about CF and learned SO much. Thank you so much for sharing that. And it helped me know a little better how to pray.

    Love…mine, God’s, family and friends…abound!

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  2. This is absolutely beautifully written. I will always follow this blog. You inspire me and are the mom that Maddox needed. He is so lucky to have you and Adam, and I love watching you guys be the best parents 💙

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  3. So much heartache with so much love and complete strength. Maddox will be full of love and strength too, for he is so blessed to be part of such a loving family.♥️♥️♥️

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  4. There are no better parents for Maddox than you, Hannah and Adam! Your strength and faith are an inspiration. 🩵🩵🩵

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  5. […] Maddox’s Cystic Fibrosis Diagnosis at just about the halfway point of my pregnancy. I have a blog post that recounts the deep emotions of this news. Here’s one part that I […]

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  6. […] the day we got Maddox’s diagnosis (blog post here), they gave us strength. On this day, only a handful of minutes after we shared the news with our […]

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