Our LEMS journey has taught us to celebrate the road less traveled

I’ve always loved the start of a new school year. Freshly sharpened pencils and clean, untouched notebooks bring me a lot of joy. Each school year brings exciting opportunities, thrilling books to read, and, for our home-schooling family, quality time with my girls.

But this year is bittersweet. Our daughter Grace should have graduated high school in May and moved on to college this fall. Instead, we find all of that delayed a year as Grace catches up on her studies.

Social media is now filled with pictures of Grace’s peers decorating their dorm rooms. Many of her friends are spreading their wings and establishing relationships with roommates at faraway colleges. They’ve graduated high school and moved on to bigger and better things.

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Grace was 15 when she was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). At a time when most high school freshmen were gaining independence, she was losing hers. While her friends were learning to drive, Grace was relying on a wheelchair to get around.

Because it took almost nine months to diagnose Grace’s LEMS, she spent a bulk of her freshman year in and out of doctors’ offices. We spent weeks away from home, traveling to the nearest pediatric neuromuscular neurologist.

School took a back seat to Grace’s health.

As she approached her senior year of high school, we realized she’d need more time to complete the credits required to graduate. It was clear she wasn’t ready — academically, physically, or emotionally.

Learning to adapt helps Grace achieve her goals

It’s taken Grace time to regain the independence she lost that year. I’ve learned that many things take a bit longer for her, and that’s OK. Often, we put unneeded pressure on our kids to follow what’s considered a “typical” path.

Our family is challenging the stereotypes that permeate our culture. Does Grace need to go away to college to have the ultimate college experience? Is it imperative she drive at age 16? We know the answer to these questions. Grace doesn’t need to follow an invisible set of rules to achieve her goals.

I choose to fight through the difficult emotions of seeing all of Grace’s friends go off to college. I’ve needed a while to accept that her life won’t follow the timeline I thought it would. We weren’t prepared for Grace’s life to be interrupted by a rare disease, but here we are. We’re choosing to pivot and adapt.

This year already looks different from the previous four, as the majority of Grace’s classes are at a local college. As she gains more independence every day, we find we have much to celebrate. You do, too! LEMS may have interrupted your plans, but they aren’t lost forever. It might take longer to achieve your goals, but it’s still possible.

Let’s not neglect to celebrate the great accomplishments of our rare disease friends. Their achievements come at a higher cost than most have to pay.

Note: Lambert-Eaton 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 other 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 Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.