This year for Father’s Day, I ordered a basket of gourmet caramel apples from Amy’s Candy Kitchen, a little shop in Cedarburg, Wisconsin. Amy’s Granny Smith apples are large and covered with sweet caramel, salty pecans, or other nuts. It is an explosion of flavor, magnifying both the sour and sweet. I added a note to the gift basket that read, “Where it all began.”
While Todd and I were dating, we would drive north from Milwaukee to the historic town of Cedarburg, situated on the banks of Cedar Creek. We’d poke around in gift shops, watch a blacksmith practice the ancient craft, pick up caramel apples, and walk along the river. Cedarburg was, and remains, a special place for us. Over the years, we’ve gone back for apples while passing through town, and now that we’ve moved away, we order them on special occasions.
Living with a loved one’s terminal diagnosis is a heartbreaking, sour part of life. Experiencing such intense sadness has opened my eyes to the suffering of the world — abject poverty, violence, disease, and illness pervading the cosmos. I find being human is increasingly difficult. Yet, at the same time, I am more aware of the beauty that co-exists with suffering; the sweetness of life. The sun rises and sets in a glorious wash of color. Deer prance and jump through fields of daisies. Flowers bloom. Birds chirp. Children giggle.
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I see this contrast play out in our own lives. With each birthday we celebrate, each family photo we take, there is always the nagging thought: “I wonder if this is the last.” The last birthday; the last photo. The sadness of that thought is juxtaposed with joy. “We’ve made it this far! One more memory in the bank!”
This spring, I celebrated my son’s first hit at a Little League baseball game, aware that Todd was missing the moment because the weather was too cold for him. When we returned from the game, however, Todd asked Isaac for all the details of his first hit. Similarly, I took a video of my daughter’s marching band at our Bridge Fest parade so I could show Todd, who was comfortable at home in his office. Later, Todd watched the videos with Sara by his side.
Even with sadness, there is joy. We are watching our children grow into themselves. They do well in school. They’ve matured and gained confidence. They are helpful and compassionate. We lean into what we have left.
We recently discovered that McLain State Park installed a walkway down to the edge of Lake Superior. Last week, during a particularly warm evening, I held Todd’s hand as the kids explored the shoreline while the sky turned a brilliant pink. That moment wasn’t dampened by his ALS. Rather, it was made sweeter.
That is the paradox of joyful sadness. The suffering makes me appreciate the simple joys so much more.
Note: ALS News Today 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 ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.
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