When I write for Chosen Families, I try to discuss issues that might touch the hearts of others living with a family member with a hidden disability. We all have situations in our homes that are unique to us … specific to our family and the type of disability we are facing. But because we are created in God’s image, we also experience issues that are common to man (I Cor. 10:13).
As I write this post, I have been living in a hotel room for the past 10 days hosting a large conference for work. The travel involved in my job is unique to me. But I also spent the week before I left creating structures and routines to help my family succeed while I’m gone … and the need for routine and structure are common to those of us who live with someone experiencing neurological challenges.
My husband suffers from memory loss and cognitive difficulties. Although his mom came to help during my trip, Ben asked me to create a menu for the 10 days that I would be gone. I chose our family’s favorite (and easiest) meals and left Ben with a daily menu plan, recipes, and ingredients that would be simple for him to follow. As we were talking, I casually told Ben “the chart I made is really just a starting point. If you feel like mixing things up and serving something on a different night or making something else, you don’t need to follow the chart exactly. It’s meant to be a guide, not a rigid schedule.”
“No!” Ben looked stricken. “It’s the schedule that helps me succeed. I need rigidity. I thrive on lists. I panic when I don’t have a list to follow.”
I am so thankful for a husband who understands his own disability. Ben knows that mental flexibility is something that he has lost. He is aware of the anxiety he feels when he needs to think outside the box, come up with plan B or make quick decisions on how to deal with a problem (skills necessary for successful parenting … are tantrums ever planned in advance? But that’s a post for another time!).
It has taken Ben eight years of struggling with his disability to learn and accept the tools that help him succeed. Structure gives Ben a sense of security. Doing things the same way each day helps him feel more in control as he struggles with a brain that at times can feel chaotic and out of control … a trait that seems common among those who live with hidden disabilities.
Understanding how important routine is to my husband’s sense of safety and well-being prevents me from being bitter and short-tempered. God’s spirit allows me to be kind, gentle and self-controlled. How thankful I am for both!
We are fearfully and wonderfully made.