I thought my days of obsessively avoiding germs and examining poop would be over once my babies grew, but such is the circle of life now that my husband has ALS.
When I was a brand-new mom, one of my biggest pet peeves was when strangers in a grocery store would grab my baby’s hands while she sat in her car seat in the basket of a shopping cart. Germs. I don’t know you. Back away. I got pretty good at jumping in between people and Sara when they reached for her little fingers.
I even required people I knew and loved to wash their hands before holding her. I kept bottles of sanitizer around the house and in the car for Todd and me. I wanted Sara to build a healthy immune system, but gradually and over time, preferably after she started sleeping through the night.
Sleep deprivation was tough on me as a new mom, but it broke my heart to hear her cry. I tried twice to let Sara cry it out, hoping she would learn to self-soothe, sitting outside her room until I couldn’t stand it any longer. My baby needed me. And she continued to need me at night for many months. It was brutal, but I knew that we’d eventually get there. When Sara and I finally got a four-hour stretch of sleep, I felt the fog begin to lift. And when we finally slept for seven hours, I felt like a new woman.
When Sara was little, I found it easier to cocoon in our home, because getting out required work. On the first Valentine’s Day after she was born when she was just weeks old, Todd planned a special evening with dinner at home. It was so much easier than going out with an infant.
During those first months, I was concerned that Sara was getting enough nutrients from my breast milk and wasn’t reacting negatively to my diet. I examined her poop and her bottom. Was something I was eating causing a rash? Was she getting enough milk? Todd used Excel to make me a chart that he amusingly titled, “Quality of Life Tracking.”
I wasn’t as obsessed with our second baby, and he turned out just fine, but now these themes from young motherhood have reappeared in this season of life as I’m trying to keep my husband healthy and alive.
Todd was diagnosed with ALS in 2010, and he has been in a wheelchair for the last six years. His forced vital capacity has declined significantly over the last year, and a cold could be life-threatening for him. I remind people not to visit when they are sick, and the kids and I use crazy amounts of hand sanitizer.
I am vigilant when I am out. If someone is sniffling or coughing, I keep my distance and try to direct Todd and the kids away from germ sources, too. One of the oddest encounters took place at a restaurant. With nothing more than a quick, “Hi,” a stranger hugged and kissed Todd, and then gave him a card for “one free hug,” just in case he needed another. For some people, a baby, a pregnant belly, or a wheelchair negate social norms of personal space.
When Todd couldn’t get comfortable in bed, I was back to my sleepless nights. I explained our nighttime caregiving challenges to people using as an example those early days as a young mother, because most parents go through that tough stage until their babies eventually sleep through the night. But with ALS, sleeping only gets worse.
Again, I find it’s easier to cocoon at home. It’s a lot of work to go out with Todd, so instead we relax at home on our family movie nights, and my mother takes the kids once a week so Todd and I can have a date night at home, where I cook him a nice meal.
He is still able to swallow and is getting plenty of nutrients. But constipation is a potential concern with quadriplegics, so Todd supplements his diet with magnesium. I’m back to tracking bowel movements and examining poop to make sure the dosage is correct.
Even though parenting newborns is difficult, we look back and cherish the time we had with our babies. This season of my life is very difficult, too, but I now and will forever cherish the time I’ve had with Todd.
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.
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