When a Season of Life Is Fading Away

Kristin Neva avatar

by Kristin Neva |

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I’ve been preparing for winter. I drained the hoses and hung them in the garage a few weeks ago. We used the lawnmower to pull Comet’s doghouse from our backyard to the front porch, where he will still be able to get into it after the snow accumulates. I called to make an appointment to have the snowblower put on the tractor, so we’ll be ready for the 200-plus inches of snow we know is coming.

But then we had unseasonably warm weather for the Keweenaw Peninsula in upper Michigan. It was 52 degrees and sunny last week, so my son, Isaac, and I hit the mountain bike trails for what was likely our last ride of the season. I savored the beauty of light streaming through the trees, the smell of autumn, and the fun of the winding flow trail.

A few days later, the ground was covered with snow.

Reminded of life after an ALS diagnosis

It would be hard to live in a perpetual Keweenaw November. It’s a month of starts and stops. The snow comes, turns to slush, and melts — unless it doesn’t. You never know with November.

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The month reminds me of life after an ALS diagnosis. It’s a transitional time when a season of our life is fading away. We haven’t lost everything, but we have lost much.

Who am I now? I’m not a widow, and yet I grieve for my husband, Todd. I’m not a single parent, and yet much of the parenting responsibilities fall on me. I’m a full-time caregiver, but I know it’s temporary. At some point I will need to rebuild a career, but I can’t plan because I don’t know when I won’t be his caregiver anymore. I don’t feel like the same person I was before my husband’s diagnosis, but I’m not yet the person I will be without him.

We grasp at whatever beauty we can still find today. I give Todd a hug and place his hand on my back so it feels like he is hugging me, too.

Just like those uncommon November biking days in the Keweenaw, I savor the sunny moments in our ALS November.

Last weekend, we got out to see a New York dance company perform at the Rozsa Center for the Performing Arts with our dance-loving daughter. It was fun to share that experience. Our son has expressed an interest in drawing, so the other day, Todd coached him on drawing buildings with perspective by using a string taped to the table.

And then one evening, Todd instructed the kids how to make homemade pizza. It makes me happy when I get to see him invest in the lives of our kids in yet another way.

We find beautiful moments even in November.

***

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.

Comments

Roxanne Kusske avatar

Roxanne Kusske

Your paragraph "Who am I now? I’m not a widow, and yet I grieve for my husband, Todd. I’m not a single parent, and yet much of the parenting responsibilities fall on me. I’m a full-time caregiver, but I know it’s temporary. At some point I will need to rebuild a career, but I can’t plan because I don’t know when I won’t be his caregiver anymore. I don’t feel like the same person I was before my husband’s diagnosis, but I’m not yet the person I will be without him." hit home with me so much. I felt just like you described, but couldn't put it into words. However, I'm wondering again now, who I am, as my husband passed away from his 2 year battle with ALS on November 4th. It's so much harder than I thought it would be, losing him. I'm so fortunate to have family and friends helping me through this. I love reading your columns! Take care.

Reply
Kristin Neva avatar

Kristin Neva

Hi Roxanne, Thanks for sharing your thoughts and encouragement! More grief--and more rebuilding. I'm sorry for your loss.

Mona avatar

Mona

What a beautifully written heart warming perspective of your life. Eleven years of living with ALS, as hard as it is, is still fortunate for yourself and your children.
Thank you for sharing.

Reply
Kristin Neva avatar

Kristin Neva

Thanks Mona! Yes, thankful we still have him with us.

Margaret Broeren avatar

Margaret Broeren

Your stories always warm my heart. Great details and insight. Thank you, Kristen.

Reply
Kristin Neva avatar

Kristin Neva

Thanks for the encouragment!

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