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In memory of Fred Drinkwater

someone we've lost to ALS

Florida


As a child of ALS, I learned a whole new definition of love.

As a child, I had a picture in my mind of what true love should look like. Inspired by the many fairytales I would read over and over, I thought love was easy and that finding your true love would be like one of those stories that ended with the prince sweeping the fair maiden off her feet and riding off into the sunset to live their happily ever after.

As a child of ALS, I learned a whole new definition of love. I saw an incredible love story unfold before my eyes as I watched my mom give every ounce of herself to caring for my stepdad. She became an extension of him, ensuring that he was able to live out his days on his terms. Her dedication to my stepdad’s care was inspiring. Her days were filled with caregiving tasks from the moment she woke up to the second she fell asleep at night, and she would do it again and again because she loved my stepdad that much. Seeing the daily acts of love between my parents opened my eyes to a new kind of fairy tale and taught me a very important lesson on what true love really was.

I learned that true love is loving each other when it gets hard, when you are giving more than your fair share, and when it is scary. When the worst case scenario becomes your reality and you still stand strong together, that is true love. When you are willing to give so much to your partner that it all but breaks you in half, but you still do it day after day, that is true love. When “until death do us part” starts knocking at your door and you stand by your love, holding his hand, that is true love. ALS took so much away from my parents, but the one thing that it couldn’t take away was their love and dedication to each other. I learned about a new kind of love as I watched them walk through an uncertain and scary chapter of their story together. I still believe in fairy tales and happily ever after, but I’ve learned that the real love story is written in the twists and turns that you never see coming.


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