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.
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Faith Virginia Bartolotta
My name is Faith. I was diagnosed with bulbar ALS one year ago, last August, but my symptoms started in May last year. I love music too; in fact, I'm making playlists for lifting me, songs for sleep, and even one for when I'm in hospice. I was an ICU CVICU nurse, and I loved my profession. The hospital was my church, where I could be of service to people on their worst day, at their worst moment. I was there comforting, consoling, and medicating. No one suffered needlessly in front of people. I was also a house supervsor so i have a vast impression of care giving around me. Now, as a patient, not the nurse, see, I was that 1/100 BSN RN. It's especially tough when I love talking to everyone, cleaning my house, walking, and nature visits are affecting my quality of life. This makes me really re-evaluate my qualities. Now they are visiting with family and loved ones at home. Walking down the roads, coloring, painting, or side gardening flowers, a redwood tree, and an avocado tree as my expressions, and listening more, which is good. And because I'm so out of my wheelhouse, I'm so quiet because of the looks people give, or that microexpression people make when they won't slow down and listen. So they either dismiss my words or talk around me
Donna P Bollenbach
Reading the first line of the song almost brought me to tears. It rings true for anyone who has or cares for someone with ALS. You and Todd should be proud of yourselves for raising them to be wonderful children under the worst of circumstances.