In life with LEMS, celebrating the little wins is a big deal

When a family outing at a theme park becomes a monumental day

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by Lori Dunham |

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There are things in this life that amaze me. The generosity of a stranger and random acts of kindness rejuvenate my view of mankind. The family that chooses to march forward in hope after the loss of a child is a sacred thing to see.

It’s in these moments that I revel in the resilience of the human spirit.

One such event happened last week. It brought me to a renewed place of deep respect and admiration for those of you who are living with a rare disease, including Lambert-Eaton myasthenic syndrome (LEMS).

I have written at length about all that my daughter Grace has regained since LEMS attacked her little body. It never ceases to amaze me how far she has come since her diagnosis four years ago.

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Last week was yet another benchmark moment highlighting how strong Grace really is. She, and those like her, amaze me with their resiliency, adaptability, and positive outlook on life in the face of adversity.

We had the rare blessing of having our adult son and daughter-in-law visit from California. We spent a week celebrating Christmas, birthdays, and each other. The week ended with a trip to Universal Studios here in Florida.

Going to theme parks has always been a popular family outing for us. When Grace was diagnosed, we had to learn the best way to visit them while taking into account her needs. Usually this entails renting a wheelchair, going when the weather is cooler, and finding activities and rides that are suitable for her.

Right after her diagnosis, Grace didn’t have a lot of core strength or neck strength. When she was at her worst, we would help her sit up in bed, but if we weren’t attentive, she’d fall right back over. At one point, she could barely hold her head up on her own.

Thankfully, her strength has returned with physical therapy and treatment that works for her. However, we know that a full day at a theme park still zaps her energy. Oftentimes, she needs to leave after only a couple hours of fun.

But this time was different.

Grace’s strength was downright impressive. She stayed at the park from when it opened until almost closing. She walked the park at various times throughout the day and stood in long lines for hours on end. She rode moderate roller coasters and other rides with intense motion, including Harry Potter and the Escape from Gringotts, Harry Potter and the Forbidden Journey, and even Hagrid’s Magical Creatures Motorbike Adventure.

It was a great day. Grace was proud of how well she had maneuvered the park. She was thrilled to be able to do what everyone else was doing.

Did she push herself? Absolutely, but her body didn’t rebel. She knew how far to push and then was satisfied with her level of activity.

Grace’s life — and yours — is so much more than an illness. You are resilient and strong. You face adversity the rest of us can only imagine and fight your body every day. But every now and again, you get a win. And that win serves as a reminder that better days are to come.

Now that is a reason to celebrate.

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.


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