Hope in the Midst of a Hard Diagnosis

For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

2 Corinthians 4:17-18

Storytelling is a literary device used in every book of the Bible. Every chapter points to the greater metanarrative of Scripture. Every story points to Jesus, like The Jesus Storybook Bible says, “every story whispers His name.” In examining the stories of Scripture, it makes me reflect on how my teensy tiny story fits into God’s grand plan. The stories of the Bible seem so important compared to my simple, small life. But because of His great grace, He interweaves our stories into a bigger story that has eternal value. 

We all have hard parts about our story that may make our bottom lip still quiver, and part of my story about my youngest daughter does that for me. It is harder to watch your children go through painful things than to actually go through them yourself. It makes you feel totally helpless and out of control. Well the facade of my control was completely shattered two years ago, when my sweet new bundle of joy was diagnosed at two weeks old with a life-threatening disease. She came into the world with a sentence of death, but what I soon learned is that God is working in all of us to bring us true life!

Esther Joy Hall was born in 2018 after a very difficult pregnancy where I was on bed rest for 9 weeks, ending with her coming 3 weeks early. My husband and I knew that we were carriers of the gene mutation for Cystic Fibrosis and our other two children had already been tested at birth and were cleared for not having it. As God’s providence would have it, Esther did not receive the same diagnosis. I will never forget that morning at the pediatrician’s office where he was deciphering the gene code to tell me that my sweet baby girl would have lifelong complications.

For a year, every time I looked at her I felt a sense of loss and grief. I would apologize to her in my mind, “I’m so sorry, sweet girl,” and my eyes would well up with tears. She looked so perfect and healthy but there was so much uncertainty about her future. I wanted to take her plight upon myself because watching her suffer would cause me more pain. Life in the face of death.

Her name became very significant and even in this small detail, God gave me hope. “Esther” means “star” and it was the Persian name for Venus, which they called the bright morning star. (I know it’s a planet, but they called it a star.) I feel like God prophetically had us name her that because she was going to be a bright star, shining His glory for all to see. The fact that Queen Esther had risen in favor and influence with the king “for such a time as this” (Esther 4:14) also gave me reassurance of God’s timing for our Esther’s birth. Her middle name “Joy” has also been a self-fulfilling prophecy because she has the most joyful personality. Through all the extra things we have to do for her daily, she is full of joy. 

No matter what suffering, pain, or trials we go through on this earth, Paul says in 2 Corinthians that these are merely “light and momentary” and they are achieving for us “an eternal weight of glory” that is much better than what can be achieved on earth. I preach this gospel to myself when I am feeling weary or my fear begins to spiral out of control. I reign it in with God’s truth by focusing on these 3 things: 

1. He will not waste our suffering. 
2. He will use all of our suffering to work out for our good (Gen. 50:20) and His glory.
3. The unseen things that are being accomplished in human hearts are what last for eternity.

God has given me an eternal perspective and I cling to the hope that this life is not all there is. This life is but a breath and every day is a gift from God. Even my healthy children are not guaranteed tomorrow. But we all look forward with HOPE and confident expectation that God is going to use our story to be part of His grand plan. Without His hand on our lives, our stories would be transient and insignificant. But with God weaving His grand story, with Jesus at the center, we get to be part of something bigger than ourselves.