A month after my husband, Todd, was diagnosed with ALS, I wrote in my journal:
“Squeezing in memories is bittersweet. Last weekend, we took Sara and Isaac to the beach. The sun sparkled off the water and Isaac pointed at the seagulls flying over Lake Michigan. I took pictures as Todd went into the water with the kids. Isaac splashed near the shore, and Sara dunked up to her neck. We don’t have as many pictures of Isaac with his daddy, so I took a lot of the two of them. I snapped away, aware I was taking pictures for the future. Someday, I’ll be telling Isaac, ‘See how Daddy was strong enough to pick you up.’ I’ll show him the picture of Todd kissing him on the head. ‘Daddy loved you, Isaac.’”
Nearly a decade later, I still grab my camera to capture moments of ordinary life: Todd coaching Isaac on his golf swing; Todd directing the kids on how to bake cookies; Todd posing with Sara after one of her theater performances. I don’t want to lose the memories.
I hear of people who say they didn’t fully appreciate their lives when their children were young. That has not been the case for me. With the diagnosis, I was struck with the fragility of life and I’ve been savoring the limited time we have.
I also acknowledge that ALS is terrible and looking at the upside doesn’t negate the losses.
Sometimes people point out the silver linings as if they are compensation. Because Todd cannot work, he gets to spend a lot of time with the kids. He’s not traveling for business or spending too many hours in the office. But that doesn’t outweigh the losses of things we can’t do. Todd cannot wrestle with our son, or throw a ball with him in the backyard. We can’t go on ski trips, bike rides, or beach vacations.
There is much that is good in our lives, but I would never say that it’s adequate to overcome the tears, heartache, frustration, anger, stress, and sadness of seeing a husband and father decline. Caregiving has an physical and emotional toll. I grieve that life with ALS is our children’s normal. They will miss out on much down the road: no dad at their weddings or give financial advice.
Childhood adversity of any sort can have long-lasting effects on kids, and losing a parent before adulthood is toward the top of the list for pain. My kids might be dealing with this in therapy in the years ahead. I had my dad until I was 38, and I felt I was way too young to lose a father. The time Todd has with our kids will be much too short.
Even though it doesn’t take away the pain of what we’ve lost and continue to lose, I savor the time we have. I’ve heard it said, “Yesterday is history, tomorrow is a mystery, but today is a gift. That’s why we call it the present.”
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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