Words for Those Who Care

Like many parents, we worked to “get our act together” before we had children. Assuming we could shield our children from unnecessary hindrances, our six and half years of marriage prior to children helped us mature our relationship, our finances, and career options. Prepared as anyone can be, we welcomed our babies into a safe home.

But, Dermatomyositis did not respect our plans. In the end, that is okay because our children have learned grace and resilience and sensitivity to people who struggle.

Still, our world was rocked by what we overheard one evening from our two and half year-old daughter mere weeks into my wife’s illness.

My wife, Kathy, was severely weak in the first few years of her illness. So, she had to explain to our daughter that she couldn’t pick her up. Thus, our daughter, Emma, was learning to crawl into mom’s lap and find new ways of accessing her mother’s snuggles. We generally assume that children are oblivious to what the adults are talking about, but as the following scene unfolded, we learned otherwise.

Speaking to her favorite doll (Mandy was her name), our daughter calmly explained in her squeaky little voice, “Mandy, Mommy can’t pick you up right now because she is sick. So, you’ll have to crawl up onto the sofa and then you can get in Mommy’s lap.”

Listening from the back of the living room, my wife and I looked at each other with instant grief. Kathy swept into the living room and sat beside Emma to comfort her, while I was caught off guard by a wave of emotion that sent me to my knees reeling.

Our daughter was affected whether we liked it or not. Our newborn son was affected, and in an unexpected turn of events, we learned that our daughter’s baby doll was affected as well.

It may be that you are caring for a child, or perhaps you have children in the home of care or in the daily rhythms of care. They are not oblivious. They are listening and learning. Love them and trust them to process the adversity. The children in your world are more resilient than you might think.

Worth Repeating
No man is an island, entire of itself.

-John Donne

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Kristen Roden

My husband was dx with ALS when our boys were 4 & 1. While our older son remembers when daddy was strong and could throw him up in the air and wrestle, our younger son has always known daddy's muscles don't work. It's heartbreaking. We knew we had to tell our older son at some point, and when my husband finally did, in a light and playful manner, he told our son that daddy has a sickness that is hurting his muscles. Our son, then about 5.5 yrs old, told daddy that he knew that already. We had tried to shield them from the situation but they certainly do pick up on it. \n\nWe've welcomed their questions and in so many ways, it's just a fact of life now. They are now 7 & 4, and they help in little ways. They get wheelchair rides (though the 7 yr old is a little too big now), and still play in lots of other ways with daddy. We try to keep the home environment positive and not dwell on the circumstances of the disease. \n\nOne of the hardest things is looking back at pictures or videos. ALS causes the voice to weaken, slur and fade over time, so watching Christmas videos from just 2 yrs ago, my husband sounds so different and he's walking fine, and it's crazy that we've lost so much in a relatively short period of time. But you are right... kids are far more resilient than we give them credit for. They keep us young and playful, and that has brought us so much life even while facing a disease that only means death.


Thanks for sharing that sweet story. I think of how my grandkids have been effected by Papa being sick, about the things they have said and might not have said.