Over the next few months, I’ll be writing about some of my thoughts and experiences with ALS from the perspective of a caregiving spouse. You can find my Joyful Sorrow column on ALS News Today or follow NevaStory where I’ll link to each article.
My world changed forever 13 years ago when I became a mom. I lay in the hospital bed with my newborn daughter’s crib next to me and my husband sitting nearby. I was in so much pain I felt like I couldn’t move.
“Sara’s turning blue!” Todd said, panicked.
My pain ceased to exist. I leaped out of bed, pulled the call cord in the bathroom, ran into the hall, and yelled, “Baby’s choking!”
A nurse came quickly, but by that time Sara was already fine. Todd’s lifeguard training had kicked in, and he had turned her facedown and patted her back to help her get the mucus out.
With my heart still racing, I held my little girl, acutely aware that my precious child was vulnerable. It was my duty to protect her from the world.
Every night I prayed, “God, thank you for Sara. Keep her safe and healthy, and help her to keep breathing.” I worried about sudden infant death syndrome. I charted her poops. I researched vaccines, nipple confusion, and BPA. Sara grew, and I managed our lives.
On a family vacation to Disney World when Sara was 3 and I was pregnant with my son, Isaac, Sara picked out a small, stuffed dog to bring home as a souvenir. Lady was Sara’s new best friend. Sara took her everywhere and slept with her.
One night, we couldn’t find Lady at bedtime. Sara was in tears. After a week of searching the house and looking into my heartbroken little girl’s eyes, I decided to buy a replacement Lady.
It was not so easy. The Disney Store said Lady was available only in the theme park. Eventually, I found a seller on eBay who made occasional trips to the park to purchase toys and then resold them for twice the price to distressed parents like me. A new Lady arrived, and all was right with the world.
But a year later, Todd was diagnosed with ALS, and our world changed forever — again.
I felt blindsided, struggling to process the diagnosis. This was a problem I could not solve.
My mind raced. What was our future going to be? Anxiety filled me. How was I going to raise the kids by myself? How would I support them with my liberal arts degree?
For the sake of my family, I was desperate to get a grip, so I found a counselor. “I want my children to feel like they are in a secure world,” I told him. “I want to protect them from pain.”
“You can’t protect them from pain,” he said, “but you can prepare them to go through it.”
We all need to prepare our children to face life’s inevitable challenges. Children who have a parent with ALS will have that struggle to deal with. Other kids will face different problems.
One evening during the year after Todd’s diagnosis, our family, along with my mother, went out to eat at Red Robin, which is much loved because they offer the kids free balloons.
Later at home, the kids were playing, and we heard a loud pop! followed by silence, and then “Whaaa!” Sara’s balloon had hit a hallway light. She was heartbroken.
My mother tried to distract her, but Todd said, “That’s OK. She needs to grieve.”
Supermom me would have promised that we’d get a balloon at the dollar store in the morning, but I let Todd take this one, instead.
“Come here, sweetheart.” Todd grabbed her hand and led her to the living room. Sara crawled up onto his lap. He held her, and she cried. He whispered, “It’s OK. It’s OK.”
Before Todd’s diagnosis, I tried my best to shield my children from pain and hurt. Post-diagnosis, I sometimes let them be sad so they can develop grieving skills.
If our child is being bullied or if we need to mediate sibling conflict, we should obviously step in and act, but at other times, we can recognize that our role is to support and comfort through the pain rather than try to erase it.
This article originally appeared in ALS News Today: Sometimes in Parenting, We Decide to Prepare, Not Protect.