In the face of a devastating diagnosis and overwhelming challenges, one family’s journey through childhood cancer and disability reveals the transformative power of faith, community, and finding joy in the darkest times.

On a very dark day in June of 2014, we sat in front of a team of doctors at CHOA and heard the words no one would ever wish to hear: “Mariah has a very aggressive form of brain cancer. She has a 50-50% chance of survival after two years. Treatment will be so aggressive that we estimate her to be admitted to the hospital very sick for the majority of her year of treatment.”  UGHHHHHH!!!!!! My mind raced and raged with fear and anger. SO MUCH anger. How could God allow this after so many prayers and positive and encouraging thoughts?? How could this happen to a sweet, full-of-life 10-year-old girl?

Little did we imagine what would eventually become a veritable storm that wreaked havoc on Mariah and our entire lives. Much to our dismay and denial, our little girl was losing all of her mobility – a RARE side effect of treatment for childhood cancer. We soon found ourselves in a fight for her life. She was finally healed from cancer, and now the aftereffects threatened to take her life again. Complete and utter devastation. It was as if we had fought a war and were left to pick up the pieces of the aftermath on our own. No help was in sight. No advice on how to gracefully navigate this new normal well. No remnants of our previous carefree existence. Friends, relationships, and everything else we knew had gone silent. How do you rescue someone you see drowning?? Sadly, most of our society doesn’t know how to help or sit with someone who is suffering, and at that time, it felt like a very lonely journey.

That is how it has felt off and on during the last several years as we have learned to take full care of Mariah – with the exception of the love and embrace we have encountered from our church body at Bethlehem Church. Through the invite to be held by our special needs ministry, Bethlehem Buddies, and subsequently, much of the church community, we have felt seen, cared for, and loved. We are known in the midst of our ugly, which has literally been a healing balm to our souls.  Sharing our story with others and having them listen empathetically is a direct path to healing our hearts. Mariah needs help with all activities and is unable to walk, sit up, or use her hands, but at Bethlehem Church, none of that is important. What God sees and what He shows us through His people is that we all have something to offer His Kingdom, no matter our physical status or capability. He truly does bring beauty from ashes.

Along my own journey of healing from the grief of everything we had walked through and lost with Mariah, I started seeking out people, influencers, and ministries that spoke of the phenomenon we were now learning: one of having a “normal” life followed by an event that wrecked and changed everything. One of the most influential people in my journey has been Katherine Wolf, a woman who was devastated by a brain stem stroke at the age of 26. She is left with many disabilities, deficits, and struggles. Once past the initial grief of this, Katherine and her husband, Jay, have both gone on to write books and subsequently start a camp for people experiencing disability: Hope Heals Camp in Alabama.

My family recently had the privilege of being chosen to attend camp. We were all a bit hesitant and insecure about the whole thing. I mean, our lives caring for Mariah are already challenging at home, and this sounded even more challenging! But, in the end, off we went to see about this camp. 

We were greeted by a celebratory group screaming and clapping at our arrival…awkward! I’m a people person, but this was definitely out of my comfort zone! We pressed on and were greeted with lessons on being honest with God about our true feelings and struggles. We were challenged that God longs for us to bring ALL our grievances to Him. By drawing near to Him with vulnerability, we were inviting Him into our hurts so He could help us heal. 

We were taught songs based on Psalm 126: “Those who sow weeping will go out with songs of JOY.” We were given space to sing a song of lament, admitting that this life is hard and sometimes such a struggle. We were brought into a Luke 14 worship service: a service where not only the popular, good-looking, or powerful are invited, but also the poor in spirit, the broken and disabled, and the sickly. We sang songs of worship. Of God’s goodness. Two people down from me sat Mariah, and over all the voices in the sanctuary, I could hear her, in her wheelchair and broken physically, singing praise to Him. HOW??? Behind me, also in a wheelchair, shouted a physically impaired young man, “Praise you, Lord!”  HOW??? How is it that even in brokenness, we can find joy?

In the words of Katherine Wolf, “Isolation is often the deepest wound inflicted by suffering of all kinds.” Isolation is what Mariah’s disability has brought on our family for so many days. At Hope Heals Camp, you are not only seen in the midst of your struggles and differences – you are taught that some of the greatest gifts are found in the darkness of struggling.  Some things, such as stars, you can ONLY see in the darkness. At camp, we cried, sang, lamented, and learned that God’s goodness is He is WITH US in the dark times. He walks with us; therefore, we get to experience treasures in the dark times because we are drawn closer to Him. 

Getting to experience Hope Heals Camp has been a gift in our darkness.  We are loved, held, seen, cherished, celebrated, and desired by our Heavenly Father. If we can work past the wreckage – and I challenge everyone to try – we see HIS hand working on making us more like Him in our pain.  No one wants this initially, but after you experience the joy in the midst of sorrow and pain, you realize you are actually honored to be at His table.  

“We are hard pressed on every side, but not crushed; perplexed but not in despair; persecuted, but not abandoned; struck down, but not destroyed.”
2 Corinthians 4:8-12