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Heavy: A Guest Post by Kristin Neva

One of the great gifts in my life right now is my ALS Wives support group – ten or so women from all over the country, none of whom ever wanted to be a part of this club.  They are passionate, loving, brave and fiercely devoted to their families.  It is such an honor to call them friends.


Kristin Neva is one of the wives. Her husband, Todd, was diagnosed with ALS three years ago at age 39. They have recently finished writing a book called Heavy, available here.  I’ve asked Kristin to pinch-hit for me on the blog today and I think you’ll love the Neva family story of God’s faithfulness in affliction.





In a darkened sanctuary, a few college students laid prostrate in prayer and worship. About twenty people, passionate about showing the Love of God to those in the city, gathered for prayer in an old neighborhood church building, now serving as offices for a much larger church on the southwest side of Chicago. An older couple laid hands on my classmates. I wanted to know God in this experiential way, too, so I lay down and prayed. I didn’t feel much of anything.


The couple came and laid hands on me. The woman prayed that I would not just go through the motions, but that I would really seek God. I thought, I am trying to seek God. But, how do I not just go through the motions?


Sixteen years later, nestled in a warm country house in the U.P., I face my husband Todd’s terminal illness—watching ALS atrophy his muscles, picking up more and more of his physical care, juggling responsibilities of parenting two young children. I am overwhelmed. I often lie prostrate alone on my bed, door locked, crying, praying, needy and desperate for God. Though I am not seeking an emotional experience, my faith experience is emotional because of my sorrow. Sometimes I cry, “God, do you love us? Then, why don’t you take away the pain?”


But then I breathe. My tears dry. I come out of the room with renewed strength, ready to help Todd, ready to cook a meal for the kids. I have enough Grace for today. I am experiencing the presence of Emmanuel, God with Us, Jesus, who suffered for us, the Savior who sweated blood for us. I feel so much. I love my family so much, not in spite of the sorrow, but rather through the sorrow.


This February, as we think about love, let’s meditate on the love of God, not a romanticized, Hallmark love, but the kind of love that brings comfort in suffering. In Romans 8, Paul writes, “Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or word?…No, in all these things we are more than conquerors through him who loved us.”


Kristin blogs at along with her husband Todd.The fruits of a long, heartfelt process have been realized by Todd and Kristin Neva with the publication of their book, Heavy: Finding Meaning after a Terminal Diagnosis, A Young Family’s First Year with ALS. Heavy is their story, and response to live beyond the illness with which Todd has been diagnosed. Heavy is available on Amazon.  


February 22, 2014 - 7:00 am

Melissa Irvine - Love Endures All Things – Thank You For Sharing Your Love and Faith

February 23, 2014 - 11:06 am

Erin - Hi Bo! I just wanted you to know how inspiring your blog has been to me. You actually email with my mom, Jill. My dad has ALS and I have really loved getting to feel connected to people like you across the country who are all in the same community. Thanks for your posts, they are touching so many people.