Legos Remind Me of Our Family’s Legacy of Love

When you have kids’ Legos in the house, you tend to have Legos everywhere! At least, that’s how it’s always been here with my “Party of 9.”

My oldest son and second child, Max, 16, got us started with the building bricks over a decade ago. Growing up, I didn’t live with brothers, and my sisters and I didn’t have Legos. So I didn’t buy them for my oldest, Lexi.

Years ago, Max, who lives with Duchenne muscular dystrophy (DMD), received a gift card to Toys “R” Us for participating in a DMD imaging study. The first of many purchases Max would make was a Lego set.

He was hooked, and he remains an avid Lego collector and builder to this day. All three of his younger brothers went through phases of Lego building, but eventually moved on to other things. Rowen, my 13-year-old who also has DMD, always struggled to use them because of his poor hand strength.

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I’ve recently cleared the boys’ closet space for new school clothes and other items. The result was three totes of Legos in a donation pile. Legos are a hot commodity. Within minutes of posting about the existence of our extras, I had several teacher friends willing to take them off my hands. I was happy to have a few fewer Legos!

My boys, however, were less than enthused, especially Max. But I didn’t get rid of all our Legos. I kept three totes of them for the boys. This doesn’t include the 10 or so Lego ships suspended from Max’s ceilings. His preference has always been Lego sets over freestyle Lego building. He likes to save the ones he builds and display them.

The discovery prompted days of sorting through, playing with, and building with our remaining Legos. As a result, this week, my kitchen table has no longer been used for eating, but for all things Lego.

Max and Charlie, my 11-year-old with DMD, had done most of the building. Rowen mostly stayed away, partly because of his hand strength and partly because he’s nursing a broken toe from a recent fall and didn’t feel up to it.

However, last night, after a day of rain that stranded our outside-living, backyard-loving family in the house all day, even Rowen made his way to the table for some Lego fun.

Last night, as my husband, Jason, and I were making dinner in the kitchen, just feet away from where the boys were playing, I turned around to see Rowen upset. Rowen isn’t a big talker and doesn’t always tell us what he’s feeling. I tried asking, but he put on his “I’m fine, I’m not talking” stoic face, and that was that.

Betty Vertin’s sons with DMD: from left, Rowen, Charlie, and Max. (Courtesy of Betty Vertin)

I had a hunch that he was frustrated because he couldn’t push the Legos together or pull them apart. I looked up to his brothers for confirmation. My three sons with Duchenne share a special bond, and they always seem to know what’s going on with one another. I think, in many ways, that is the most fantastic thing about having three sons with DMD. They can navigate this treacherous path together.

When I looked up, Max was crying. He felt what Rowen was feeling, and it moved him to tears. Max and I can communicate with facial expressions and few words. He told me all I needed to know. We hugged and loved Rowen. We cleared the Legos and decided it was a good night for board games after dinner. Rowen loves a good board game!

That was it, the extent of our moment. But it left quite an impact on me. The love that Max exhibited through his tears was everything. Our life with three sons with DMD is marked by many sad and challenging days.

My family doesn’t have a lot to give. Duchenne is expensive in every sense of the word. I often prayed and hoped that our love would be enough. There will never be buildings named after us; our monetary donations will never amount to much. But I’ve always hoped my family could leave a legacy of love.

Max’s tears over his brother’s loss is the love I always hoped for in my family. Duchenne robs the boys and us of so much and will continue to do so, but it won’t stop us from loving one another so hard that our eyes leak.

Note: Muscular Dystrophy News 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.