Those earlier years with ALS seem like a different life
For our first decade, we sought a normal life, but we are in a new season now
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Nine years ago, and seven years into my husband Todd’s ALS journey, we were still trying our best to get out and have a normal life.
That fall, our 8-year-old son came home from school with a flyer from a local church. They were hosting a Harvest Festival and would be racing Hot Wheels down a 20-foot ramp. He really wanted to attend.
It seemed like just another thing to try to squeeze into our already hectic life — our 11-year-old daughter would be in the middle of her violin lesson when the event started. But Todd said he’d go with our son.
I loaded Todd into our accessible van and dropped them off at the church, and then I picked up our daughter from her lesson.
She and I went out to dinner where she chatted away. We went shopping, and she found a cute necklace and some clothes. I showed her how to spray perfume on tester strips.
A normal life
I loved the experience because it just felt so normal. We were having a girls’ night out while Todd and our son had a guys’ night out.
After a couple hours, Todd called and said they were ready to be picked up. Our son was enthused about the event. Todd said it was OK, but his neck was tired from sitting up and driving around in his wheelchair. I felt sad that even this little outing was so physically hard on him, but I was glad we were able to give our kids a taste of what I imagined our normal would have been had Todd not gotten ALS.
For our first decade with the disease, we fought for normalcy — pushing Todd’s wheelchair through snow to get to hockey games or school events, bringing ramps to get into the house of the host of our small group Bible study, elevating hotel beds with wood blocks so we could get a Hoyer floor lift under it. It was so much work to fight for those ordinary experiences. We made memories, but it was exhausting.
Todd has been homebound now for about six years, and those earlier years with ALS seem like a different life. Now I attend school events solo and take videos for Todd, or he watches online if that’s an option. I go on rare trips with our children while Todd stays home with a caregiver. When family and friends visit us, we play board games such as Scrabble with Todd. We watch shows and movies online.
We’re living through a new season of ALS.
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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