Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. (Romans 8:26 ESV)




“A diagnosis. No parent wants to be told her child has a condition she can barely pronounce, and I was no exception.”*

On the day the pediatric specialist phoned and told me that lab results indicated my toddler had a serious genetic condition, much around me looked the same as it had the day before.

The laundry pile sat in the same spot. The same stack of dishes needed to be washed. My four young children, including a newborn, needed my care.

However, for me (as for so many other parents who receive an unwanted diagnosis for a child), it was the day my world flipped upside down. I rolled the name Alpha-1 Antitrypsin Deficiency around on my tongue as my brain tried to make sense of our family’s newly defined reality.

“It has a name,” I thought. Here was an explanation for my son’s elevated liver enzymes and his perplexing medical history. A month earlier, his high fever and swollen liver had sent him, my husband, and me racing over the bridge to the emergency room at the Children’s Hospital of Philadelphia in rush-hour traffic. Although my child’s fever resolved, his liver numbers didn’t normalize. His confusing medical history went further back and included feeding issues, reflux, nebulizer treatments, and various childhood illnesses.



Now, with this name (an answer of sorts) came a host of new questions that were equally perplexing: What would this mean for my child’s future? What would this mean for our family? I wanted information, but more than that, I craved understanding. Where was God in this?

Even now, years later, it’s easier to state the facts than to relive the raw emotions of that time. The shock and grief that followed my conversation with the GI doctor that quiet afternoon were only compounded by another phone call about a month later. Because Alpha-1 is a genetic condition, our whole family had been tested; the pediatrician was calling to inform me that “two more of my children had a medical condition that I now understood could impact the liver and lungs with potentially life-threatening complications over time.”*

After asking my husband, Scott, to come home from work, I delivered a simple report to him – and I was undone. One child’s diagnosis was too much for me to process, let alone three children’s diagnoses. Was this really happening to our family? It seemed too impossible, too dramatic, too nightmarish.

Tears and questions overflowed as I clung to Scott – but one question stood out among the rest: “How do we pray for our children with a chronic condition?”


As Christians, Scott and I believe in God, and we understand the value of faith-filled prayers. We know that we can bring our burdens to the Lord and receive mercy and find grace to help in time of need (Hebrews 4:16 ESV), but part of what I was asking was, “What do we pray when we don’t know what to pray?”

At diagnosis, when it’s hard to wrap our minds around the words a doctor says, let alone grasp the implications of those words, it’s hard to know what to think, let alone what to pray. What a comfort to know Scripture tells us in our moments of greatest weakness that we don’t have to have the perfect words! Instead, we can find comfort in knowing that God’s Spirit helps us to pray:

Likewise, the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. (Romans 8:26-27)

If you don’t know what to pray, whether due to a new diagnosis or some other grief, you are not alone. It’s alright if you don’t know what to say or how to say it. As Jesus said, Your Father knows what you need before you ask him (Matthew 6:8). Humbly go to the Lord and ask Him to help you pray.



That afternoon, huddled together, my husband and I closed our eyes and cried out to God with groans and tears. We invited Him into our hardship. We poured out our hearts to Him (Psalm 62:8). As we did, the Holy Spirit led us to pray as Jesus did before us: Your will be done (Matthew 6:10). We asked that the Lord be glorified in our family’s suffering.

Three of our five children were diagnosed with Alpha-1 in 2013, and since then, our family has faced additional diagnoses, including food allergies, celiac disease, and hypoglycemia. The Lord has graciously guided my husband and me in praying for our family through all these different health challenges, and we’ve experienced His merciful answers along the way.


  • When have you not known what to pray for your child?
  • How are you encouraged to know that the Spirit of God helps you pray when you do not know what to pray (Romans 8:26-27)?
  • Take a few minutes to pour your heart out to the Lord and find refuge in Him (Psalm 62:8).

Additional posts in this series about how you and I can pray for our children with chronic conditions in the day-to-day and as we look to the future can be found HERE (Part 2) and HERE (Part 3). 

*Quotations in this article are taken from Katie Faris’s book, He Will Be Enough: How God Takes You by the Hand Through Your Hardest Days, published by The Good Book Company, June 2022. 

Yellow Bubbles
Parenting a Child with Chronic Illness

Parenting a Child with Chronic Illness

A Blessing in Disguise! Parenting a child with chronic illness requires more strength, resolve, perseverance, and courage than we likely ever dreamed possible. Yet, it also blesses us with the gifts of compassion, perspective, presence, and profound love as we are daily drawn closer to Christ.


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