A Tree Full of Memories

Kristin Neva avatar

by Kristin Neva |

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We decorated for Christmas this past weekend. The kids and I went out into the woods, and my 12-year-old son, Isaac, cut down a balsam fir. My 15-year-old daughter, Sara, carried it back to our house, and we put it in the tree stand in the living room. When we were ready to decorate, I went to my husband’s office where he was working on a project.

“We’re going to decorate the tree. Can you come join us?”

“Do you want me to?” Todd looked reluctant.

“Yes,” I said definitively.

Todd was editing a podcast for our church, and he’s also been busy working on my Christmas present — a photo book of the year’s highlights. He’s never been one to sit still, until ALS forced him to use a wheelchair, and it’s hard for him to just watch the action. He spends most of his time on his computer where he can be most independent and creative.

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We don’t know how many more Christmases the kids and I will have with him, so even if Todd can’t do much to help, I want him there with us. Because he loves me and values our family time, he agreeably rolled out to the living room.

We played Christmas music as we unpacked decorations and hung ornaments on the tree. Isaac asked about the plethora of fox ornaments.

I laughed. “When we got married, I didn’t know I was getting a fox collection,” I said.

“Isaac, my name means fox in Old English,” Todd explained. “And to be clear, I never collected the foxes. My mom and sisters collected them for me.”

Sara started hanging the lights, first wrapping them all around the base. Todd suggested she start over, and instead wrap the lights most of the way around, and then go back the other direction.

Isaac clipped the top off the tree and put the angel on.

Sara and I pulled beaded garland out of a storage container. “Dad and I bought this at Target our first Christmas together,” I said.

Isaac hung our four Christmas stockings, and my mind raced into a future year when we will be hanging only three stockings. That will be a tough moment. I know many people who have lost their spouses to ALS. They write social media posts about their challenges with their kids, and grief for an absent parent is often accentuated on holidays and at significant milestones.

I pulled my mind back to the present. We are still a family of four, and so we rocked out to Christmas music and decorated the tree with ornaments.

Christmas tree | ALS News Today | A closeup image of a Christmas tree with homemade ornaments of Isaac and Sara hanging from its branches

Homemade ornaments of the children, Isaac and Sara, hang from the Neva family’s Christmas tree this year. (Photo by Kristin Neva)

We hung many ornaments that were crafted with love by my Aunt Phyllis. She gave us beaded ornaments, fancy folded paper ball ornaments, and ornaments that featured pictures of Sara and Isaac when they were little. My Aunt Phyllis died seven years ago last spring.

We hung birch bark heart ornaments that my mom made with Sara, and a white fabric dove ornament that she helped me make years ago.

And we hung ornaments that trace the history of our family of four.

An ornament someone gave us the year we got married with two snowmen, one labeled “Todd” and the other “Kristin.” An ornament that was a party favor for my baby shower 16 years ago. A mouse ornament with the words “Baby’s First Christmas.” An ornament I bought at a gift shop in Minnesota the summer after Todd’s diagnosis. While Todd was still walking, we toured the North Shore of Lake Superior and hiked around Gooseberry Falls. A wreath Isaac made with puzzle pieces at school when he was in first grade. An ornament I bought at Bay Beach Amusement Park in Wisconsin, where the kids and I went with friends, leaving Todd at home with a caregiver because it was too hard for him to travel. An ornament with four penguins labeled with our names and “The Neva Family” written on the bottom.

Our Christmas tree holds so many memories that will live on, even as our future is so uncertain.


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, and are intended to spark discussion about issues pertaining to ALS.


Phyllis Gridley avatar

Phyllis Gridley

Hi, I enjoyed reading your story Kristen and can't help relating to your story written as a caregiver but also to your husband as he has ALS. My dad had ALS and so did his brother. Theirs started with speech and swallowing problems which led to breathing problems. I was my dads caregiver when we spent several months at the lake at his request. I was 19 when he passed. Fast forward to my May 2020 diagnosis of ALS at 68 yrs. Mine is familial and is starting in my legs. Like your husband I will be in a wheelchair soon. My husband died in 2019 of Parkinsons and Lewy Body Dementia. In March 2021, I met an awesome man who is my ray of sunshine. Long story short we are getting married Jan 30 2021! We enjoy each day and I accept his love and attitude which is so positive but also realistic. Like you he encourages me to do what I am still able to. It works for us. So sorry this got longer than I intended but I related to your story and wish your family all the best in 2022.

Kristin Neva avatar

Kristin Neva

Thanks for sharing your story! So much joy and sorrow in life. Congrats on your marriage!

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