The Unsung Heroes of the Battle Against and With ALS

By now, you know doctors diagnosed my husband with ALS (Amyotrophic Lateral Sclerosis – https://iamals.org/what-is-als/) in May 2019.

To say that we took his diagnosis hard would be a gross understatement. But then, to make it even worse, we had to tell our children the news. Now, again, as you know, we lost our middle son to an accidental overdose in 2013, so our family is no stranger to bad news.

This was different. We were telling our three living children and our friend who we consider our second daughter that not only did their father have, to quote Brian Wallach, a “CURRENTLY terminal disease,” but we had to tell them how the disease was likely to progress, and how much time doctors were giving their father at the time of his diagnosis.

We told them. We cried together. We swore together. We promised to fight this together, and support each other.

And we have.

Our children aren’t the only ones doing this. It doesn’t matter if they are young, or adults. They step up and into a world they never wanted nor expected, and they do it with love, passion, dedication, humor, and strength.

The children of those with ALS are some of the unsung heroes of this hellish disease. They didn’t sign up, or take vows, to be part of such a journey. They choose to stand by their parent. Over time, they take on roles that previously the parent had with the child. For example, helping a father put on his socks. Wiping a mouth. Holding a hand to draw a square. Helping a father shave. They help in so many ways, ways none of us ever expected to need.

For us, our children are adults now. They help in more ways than I can count or list here. More than anything, they help with limitless, unconditional, unwavering love. They don’t shy away from the reality, nor do they hide the emotions inherent in this journey.

It isn’t just the children, but for us, our grandchildren, too. They know their grandpa has a terrible sickness, but instead of being afraid of it, or of him, they look for ways they can help; they ask questions; they accept the reality.

This is two of our sons, and one of our grandchildren, helping us to fix the walkway, so it is easier for my husband to maneuver.

No one wants a diagnosis of ALS. No one wants that diagnosis for a loved one. But, the one thing I am sure of is how amazing the children of those with ALS are – they truly are unsung and unseen heroes.