It’s time again to send our annual Christmas letter and picture card to our friends and family. Since my daughter could talk, I’ve kept a list of cute things the kids say throughout each year. I pick the best to include in our letter.
When Sara was 2, we were riding in the car with a girl who was a little younger than her. The girl started babbling, and Sara asked her, “Are you speaking Spanish?” One evening that same year, Todd and I were putting Sara to bed, and she said, “I love you, Dada. I love you, Mama.” And then she looked up at the ceiling fan and said, “I love you, fan.”
In 2010, our annual Christmas letter included the news of my husband’s ALS diagnosis. The family picture from that year looks fairly normal, but I know the reason I’m the one holding baby Isaac: Todd’s arms were too weak.
The pictures that follow show the progression of the disease. Todd is standing, but his arms hang limply. One year, he is sitting on the bench seat in our living room, and the next he is on a stool because it was too difficult to transfer in and out of a regular chair. The following year, he couldn’t transfer at all, so he’s in his wheelchair. And then he got head controls for the wheelchair.
As I look over those letters and cards from the past decade, I feel the pain of the disease and the hardness of life behind the matter-of-fact updates on the disease progression. Todd’s muscles weakened, his breathing declined, and he had surgery to get a feeding tube.
Even though the decline is ongoing, in some years, I make no mention of Todd’s health. But I always include the fun quotes from the kids. The quotes from five years ago, when Isaac was 6 and Sara was 9, make me smile:
Isaac: “Did you know that some of the planes in my Lego City are handicap accessible?”
Sara: “I need a stunt double, so she can go to school and I can sleep in.”
Isaac woke up and found himself flipped sideways on his bed: “I don’t know why, but I think God put me in this position.”
Sara: “I’m going to take my hair down. Does anyone want to see the aftermath of my high ponytail?”
Quotes from past years make me laugh, and they remind me that we still found bits of joy in each of those difficult years.
This fall, we have been grieving the loss of Todd’s dad to cancer. In the midst of our sadness, we’ve found ourselves remembering the jokes and puns he told. And as our world seems to descend into chaos, I’ve been avoiding the news and listening to podcasts that make me laugh instead.
I find myself craving laughter as a way to cope with the sorrow in the world.
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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