Our Journey

By Darci Steiner

In 2000, at age 35, I began needing care from my husband after falling down the stairs in our home. Mark was launched into full-time caregiving not only for me but also for our two young daughters. While confined to bed, I developed a nerve-pain disorder called Complex Regional Pain Syndrome (CRPS), which is very complex and measures the highest pain one can feel when ranked on the pain scale. Even the touch of a sheet on my skin sent me over the moon in pain. I was bedridden for four years due to the injuries incurred during that fall.

Mark and I agonized over how my decreased role in our daughter’s lives would affect them. One day, while our oldest daughter was in third grade, we received a call from the school—Jenny had forgotten her lunch. Mark found the lunchbox by the front door and brought it to the school. when he got out of the car, he saw the kids at recess. Mark spotted Jenny on the blacktop instead of on the playground, where she usually played with her friends. She was spinning a boy around in his wheelchair, the two of them playing together. We learned later from her teacher that Jenny played regularly with this boy during recess. God alleviated our fears that day. He was forming our children to be compassionate, something we prayed about regularly for them, and he was using my disability to do it. Our kids weren’t afraid of wheelchairs or the people in them.

Today Jenny works at a hospital as a child-life specialist helping children understand medical procedures so they are less afraid. Our youngest daughter Nicole is researching and developing studies in a Ph.D. program to determine when children begin to understand the concept of pain. God formed both girls to have deep compassion while growing up. The adversity they went through as young children is now blossoming into gifts in their adult lives.

After miraculously recovering from my first debility, nine years later, in 2018, I was thrust back into disability due to a foot injury I sustained during clean-up at Jenny’s wedding. The CRPS reignited, and I began another fight for my life. Mark has been there, again, to care for his injured wife. Almost five years later, I am still disabled, although improving. Because I sit a lot, I write a lot. My first book, Beauty Beyond the Thorns: Discovering Gifts in Suffering, discusses “our journey,” as Mark likes to call it. He wrote a chapter in the book about what caregiving has felt like:

I can identify with every character in the tale [of The Good Samaritan], including the donkey. At times I’ve been compassionate like the Good Samaritan. But like the priest, sometimes I make “spiritual” excuses not to care for her. Like the Temple assistant, I think the priest up ahead (spiritual leader) neglects her, and I get critical. Like the innkeeper, I’ve sometimes treated her like a tenant, providing food and shelter without really being connected. And like the donkey, I don’t think anyone cares or appreciates how heavy my burden is.

Very few people know what it is like or how to offer encouragement and support. Sometimes, I reach the end of my rope and can’t do it anymore. I tell people it can be like holding your hand in a flame. I suspect each caregiver has their own version of burnout. Some caregivers leave. Others turn to other sources of fulfillment, like affairs, alcohol, or work. My version is to “go zombie.” I grow cold toward her, go through the motions, and grumble. It’s odd how quickly I can go from caring about how my suffering wife feels to focusing instead on how her suffering makes me feel.

Frankly, caring for someone undergoing extended suffering exposes you. It brings out the truth about who you are—not the person everyone around you thinks you are, but the real you.

Mark is an exemplary caregiver and is the reason I am still alive. He hardly ever “goes zombie” on me, but it is challenging for anyone to provide constant care for another. It has taken deep spiritual wrestling on both our parts to understand that God has been forming him through our trial, just as he has been forming me. This is our journey.

As a caregiver, Mark plans wonderful dates for us. Just because I can’t get out much doesn’t mean we can’t have fun! One of the creative adventures we’ve gone on in our home is camping in the middle of our living room. It took hours for Mark to set up the pop-up tent, plants (trees), cricket, bird, and thunder sounds (from an app), stars in the sky (from a children’s constellation toy), bows and arrows (children’s rubber play arrows) to hunt for our food, our “catch” (Simba stuffed animal lurking at the top of the stairs), rain showers (spray bottle) when the lightning struck, a delicious meal we ate by the campfire (fireplace), then a dessert of berries and whipped topping inside the tent when the rain began falling. We climbed into our sleeping bags, opened the top flap of the tent, and gazed at the stars in the sky (ceiling). It was such a magnificent act of loving kindness! I will always remember that special day and many other creative dates we’ve had.

Recently we have become grandparents! Like when our children were little, we wonder how my disability will affect our granddaughter and soon-to-come grandson. It looks like God may be forming compassion in them, as well. How wonderful it is to have a heavenly Father who loves us, our children, and grandchildren and uses even suffering to form us and those around us. Suffering is hard, but my husband’s love for me has eased some of the pain for me and our entire family. He has been an example of what it looks like for a man to lay his life down for his wife (Eph 5:25).

This is our journey.

Darci J. Steiner is the author of the award-winning biblically-based book Beauty Beyond the Thorns: Discovering Gifts in Suffering. She began writing as a way to process her pain after becoming disabled. Darci writes to encourage others always to hold on to hope. Darci is an author, inspirational speaker, and nutritionist. She loves spending time with her husband, two adult daughters, and baby granddaughter. Please visit www.darcijsteiner.com to learn about her books and speaking details.

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