We Have Learned to Celebrate the Little Victories

If anyone had told me three years ago how our life would look today, I would not have believed them. I never thought I’d be caring for a child with a rare disease. It is exhausting, rewarding, and I don’t think anyone can prepare for it. 

Looking back to the onset of our daughter’s illness, we didn’t see warning signs or precursors to the symptoms that led to her Lambert-Eaton myasthenic syndrome (LEMS) diagnosis. Our lives simply changed without warning.

One day, Grace was healthy. The next day, she wasn’t. 

I have written about our journey to a diagnosis and the grieving process as Grace lost mobility and independence. For a long time, our days were marked by decreased activity, loss of skills, and accommodating her lessening abilities. 

Now, almost two years out from diagnosis, we are finally feeling the swing of the pendulum back toward restoration of skills and abilities. 

As we witness these restorations, we realize the importance of marking the small and large achievements in Grace’s life. What may seem mundane and “normal” for a teenager is a great achievement for Grace. 

We applaud her resiliency, her strength to fight for independence, and her mental tenacity to plow forward to achieve her goals. This disease steals so much — we must applaud and recognize a win! 

One such win was when Grace finally got her learner’s permit to drive. She had a very strong desire to get it, just like all of her friends. I did not openly express my doubts, but I was unsure she would physically be able to drive. I didn’t know if her leg strength would be sufficient to drive a car. But after a year of physical therapy and the right treatment, the doctors believed it was safe for her to learn to drive. 

Due to COVID-19 restrictions, all driver’s education classes are accessible online in our state. Grace spent over a month studying and working through the drug and alcohol class along with the permit test questions. 

She passed both, and it was time to go get her permit! 

I can’t tell you how excited she was to walk into the Department of Motor Vehicles for her permit. Her smile lit up the room. It showed the pride she felt in doing something that most kids take for granted. 

Getting her permit was a symbolic step toward the independence Grace was never sure she would have. 

We will spend a good amount of time teaching her to drive. We will evaluate her health to assure safe driving practices. She will gain the confidence she needs before venturing out on her own. 

But today we mark this moment as a day of great achievement. We celebrate. We encourage. We eat lots of ice cream and go find an empty parking lot to practice driving. 

Today is a step in the right direction. We’ve been given something that had previously been stolen. It has buoyed us with hope and acted as a balm to this weary mama’s soul. 

Hope is a glorious thing. We all need these days full of hope and promise to pull us through the next hard thing. 

Mark these moments. Record them. Remember them. Celebrate. Then go have more ice cream.

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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.