How my husband and I try to teach our children well in life with ALS
Preparing them for life gives us a sense of purpose in the midst of pain
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Getting out of the house is always a challenge because my husband, Todd, has ALS and needs care almost 24/7. I never know if I’ll make it to my Monday night ukulele group.
When I do, I’m usually rushing to feed Todd, help him in the bathroom, and get him set up at his computer. He’s able to use his HeadMouse to text me or another family member if he needs help while I’m gone. If he’s having a day when his lungs keep filling with mucus, I don’t leave him. And sometimes I don’t go because I just don’t have the energy to add one more thing to my schedule, even though singing with a group is something I enjoy.
But I made it last week, even though I was half an hour late. I settled in and joined the group. After a few songs, someone asked, “Kristin, do you want to sing ‘Teach Your Children‘?” I agreed. That song by Crosby, Stills, Nash, and Young is one of my favorites and one I can even lead. We’ve been playing it in the group for years.
I started the intro, calling out the beats we give to each chord for the newer members. And then we sang:
“You, who are on the road/ Must have a code that you can live by/ And so, become yourself/ Because the past is just a goodbye”
Todd’s journey with ALS began when our children were only 9 months and 4 years old. Teaching them and preparing them for life has given us a sense of purpose in the midst of our personal pain. We’ve tried to give them a code to live by — to teach them to be compassionate and responsible.
“Teach your children well/ Their father’s hell did slowly go by”
When I strummed my ukulele and sang that line, tears came to my eyes. Their father’s hell of ALS has been going by slowly for nearly 16 years.
“And feed them on your dreams/ The one they pick’s the one you’ll know by”
Because Todd is paralyzed, he doesn’t have the ability to do many things we imagined he would, but he is a constant presence in our lives and has helped our children develop their gifts. He coached our son on how to use his tools and take on house projects. He’s cheered on our daughter in her artistic pursuits in dance, music, and theater, and he’s helped edit her college scholarship essays.
After we finished that song, I sat in the moment for just a minute before someone counted us into the next one.
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.
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