Planning for a tornado emergency with 3 sons who have DMD

It’s now tornado season here in Nebraska, which is part of the U.S. Tornado Alley. I could write a column about Duchenne muscular dystrophy (DMD) being like a tornado in the way it came tearing through the life we’d established when my three sons — Max, 18, Rowen, 15, and Charlie, 13 — were diagnosed. Much like a storm, DMD ripped apart everything we thought we’d known and planned for life since the foundation of our family.

This column, though, concerns literal tornadoes — violently rotating columns of air, aka twisters, that extend from a storm cloud to the Earth’s surface and destroy everything in their path. Tornado season in Nebraska kicked off Monday night, and we were under a tornado watch from early evening until 5 a.m.

News reports and social media posts warned us that we were at a higher-than-usual risk of tornadoes forming. They also reminded us that severe weather at night is extra dangerous because people risk sleeping through the alarm systems.

My husband, Jason, and I have been married for over 20 years, and although we’ve had to go to the basement in our ranch-style house on several occasions when the sirens have sounded, our home and family have always been safe.

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But that doesn’t mean twisters aren’t deadly. When my husband was young, he lived through the night of the twisters in Grand Island, Nebraska, in June of 1980. A book and a movie tell the story of seven tornadoes that touched down that night, killing five people and injuring 266, according to the Omaha World-Herald. My husband’s family members were fine, but their house suffered damage.

Tornado threats are real and scary. On Monday, after we put our kids to bed, my husband and I made a plan. We had to make some changes from our past, when our sons with Duchenne were still ambulatory and strong enough to get down the basement stairs on their own — or when they were so small that we could carry them.

We have a chair lift, but as our boys have grown weaker and two have become nonambulatory, it’s not as helpful as it once was. And if we were to lose power, it’d be useless anyway. But we needed to get them to safety, no matter how difficult that might be.

Readying for tornado season

Here’s our plan.

1. If we heard sirens, I’d first take Callie, the 2-year-old, downstairs and give her to our 9-year-old daughter, Mary, whose bedroom is in the basement. I’d then return to help with Max, Rowen, and Charlie.
2. Jason would wake Charlie, who is still ambulatory, and have him start butt-scooting (a term we use to describe sitting and moving one step at a time) down the stairs.
3. Before our son Chance, 16, went to bed in his basement room, we told him that if he heard sirens, he needed to come upstairs to help get Max and Rowen to the basement as quickly and safely as possible.
4. Jason and Chance would get Rowen on the chair lift if we still had power. If not, we’d use our perfect lift (a sling used for two people to carry someone) for him. We had it ready at the top of the stairs so that I wouldn’t have to look for it, using time we might not have in an emergency.
5. While they were helping Rowen, I’d get Max out of bed and head to the stairs. If the power was on, Jason and Chance could carry Max downstairs safely (he’s lighter than Rowen) while Rowen took whatever lift we were able to use.

We hoped that our plan would take only minutes.

Getting Max, Rowen, and Charlie to safety was the priority, but it did occur to me that if a tornado destroyed our house, we’d probably also lose their power wheelchairs and specialty medicines. I might have an easier time dealing with our house blowing away than I would with Max and Rowen losing the independence, safety, and comfort they get from their wheelchairs.

We thus decided to park all three wheelchairs in the bathroom if we had time. Perhaps the chairs would be dry and functioning if that windowless room remained.

Thankfully, nothing came of this particular tornado watch except rain and wind. But I’m thankful we formed a plan we can use this tornado season. Twisters are one of those things you only think about once you have a reason, which can be too late.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.