How Parenting a Dying Child Changed All My Expectations

When we had a child on the way, we said we were expecting. What we expected was a healthy, happy, “normal” baby. When our child was born, we never really stopped expecting. We expected him to crawl, walk, talk, do well in school, get a good job, find a nice spouse, bring us grandchildren, perhaps care for us as we age.

Once we learned my son Lucas’ diagnosis of Menkes syndrome, all those expectations went out the window. It was devastating. But it was also liberating. We had to learn that any disappointment we felt was due to comparing our new reality with our imagined future. It was never hard to see him as the wonderful, shining boy who was full of joy and laughter. What took a bit of work was changing our mindset away from the wonders (or terrors) of the future to the happiness in the here and now.

Lucas has given us special permission. Permission to live for the moment. What we had was Lucas and each other and later his younger brother. In any given moment, that alone was precious. Lucas showed it to us. Not just with his bright, gleaming eyes. Not just with his ear-to-ear grins and deep chuckling laughter. Despite his limitations in communicating, he’d actually take us down a peg or two when we got off the path. Without fail, if my wife, Tina, or I was working too hard to the point of grunting and grumbling, Lucas would laugh at us. Instantly we’d be transported back to the big picture of the wonders of now. Smack your head against a cabinet? Lucas laughs at you, and you remember it’s not such a tragedy. Ditto for hitting your thumb with a hammer. Let some untidy bit of food fall from your mouth and Lucas would launch into peels of throaty laughter. It didn’t seem like too much over-interpretation to decide Lucas felt superior to us. We the able-bodied, who had to stuff food into our mouths and exert ourselves to try and bend furniture or the world to our wills. What silly struggles the rest of us have. Not Lucas. In some ways he strikes us as a more pure being.

Daniel's son smiling
Lucas can’t walk or talk or sit without support. Lacking the capability to do much at all means he can’t do really anything wrong. He never steals a toy from his brother, he never hits anyone, he never lies. Run down the list of sins; he never does any of them. Instead he’s an almost constant source of smiles, laughter and joy. It’s hard not to view that as some kind of distilled existence.

I know I’m romanticizing what to others observers is a cruel disability. Few people know better than we do how terrible a disease like Menkes is. In dark times I allow myself to imagine, to go back to old expectations, to try to envision a Lucas that might have been, if only. But that isn’t the boy we got. We got the one who never disappoints us. We got the one who has never once been less than loving to us. We got the one who made us see the world as a better place, one we might make even better if we try. We got the boy who’s turning his little brother into one of the kindest, most considerate children we’ve ever known.

With Lucas, it seemed we the parents needed to rise to meet his expectations. He expected nothing too difficult, but it amounted to an entire life shift. He expected us to be with him. As close as possible, as often as possible. That’s all. And that is everything.

When Lucas was born my wife and I asked aloud several times how did we get to be so lucky to have the greatest boy in the world. We still ask that question.

Find this story helpful? Share it with someone you care about.

Related to Menkes Disease

When the Internet Told Me the Way I Talk With My Daughter Isn’t Considered Communication

My daughter, Mae, is still little, and while she’s had what feels like a language explosion lately, she doesn’t have a large vocabulary compared to your average 4-year-old. If you go her therapist’s word count, Mae’s used her little voice to say somewhere around 200 different words over the course of the last 14 months. Sometimes that’s nearly [...]

Train’s Music Video Gave Me a Mommy Memory I’ll Never Forget

My 4-year-old and almost 6-year-old came out of the playroom dressed up in matching Princess Tori outfits, little fake high heels, matching Barbie guitars and crowns (that were on crooked). They were, as my 4-year-told me, “ready to rock out!” She strums the Barbie electric guitar, and the doll’s voice rings out and agrees with her: “Let’s rock out!” [...]

I Finally Figured Out What My Son’s Favorite Saying Means

He’s 5 and running at me. “I just got home,” I think. “Touch me, Mommy!” he screams. He wants a hug — at least I think that’s what he wants. I open my arms and bend down to his level. Aw man, that hurts, I think. My sore back reminds me I’ve been on my feet for [...]

This Groundbreaking Moment Only Happened Because of My Nana

We’ve had a lot of ups and downs, and I’m not too ashamed to admit, we’ve had a lot more downs than ups. It doesn’t help that I hate asking for help. It makes me uncomfortable. Especially with money. With my Nana, I never had to ask. She always offered. I tried to turn her down, but [...]