I Am Savoring Our Limited Time as a Family

Kristin Neva avatar

by Kristin Neva |

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diagnostic delays

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.”


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Lisa Cross Bonahoom avatar

Lisa Cross Bonahoom

Thank you for the news you bring. I read it hopefully, waiting for the day you say that a cure is found!

Dave Reckonin avatar

Dave Reckonin

I have said several times here that, given the 'blindfold darts' profile of ALS research for new effective treatments and/or a cure, a serendipitous burst of accidental discovery in the labs would be our best hope.
I'm not sure the researchers themselves, committed as they are, would agree as they would claim their work is finely targeted.
I think the very recent and accidental discovery of a previously unknown T-cell by Cancer researchers at Cardiff University proves my point. This cell has been proved in the labs to kill virtually all cancer cells whilst leaving healthy tissue unaffected and intact.
Human trials with hitherto terminal patients might start later this year.
This exciting development in the field of another horrifying illness should give us hope that 'if it can happen with them, it can happen with us.'
Keep strong, all ALS families.

Peter WENDLER Heideweg 17 08340 Schwarzenberg avatar

Peter WENDLER Heideweg 17 08340 Schwarzenberg

Meine Frau wartet ungeduldig auf Hilfe. Sie liegt in einem Pflegeheim. Pflege ist gut. Aber leidet weiter nichts. Sie ist 56 Jahre alt.Im Mai ' 19 hat sie noch gearbeitet. Jetzt wartet sie nur noch auf ihren Tod. Schlimm


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