The Mighty Viking

Conquering those things we must, one story at a time

Posts Tagged ‘disabled’

Sean‘s Mom

“Hi, I’m Sean’s mom”

The words carried the kind of lilt that only a mother can give them. A precisely indeterminate kind of lilt that sweetly invokes your middle name and implies unspecified doom if you don’t pay careful attention to whatever comes next, all at the same time.

The doctor smiled back, knowing already two things before he had finished closing the exam room door: first, that Sean, whoever he might turn out to be, was someone special and second, that the wee lad had a special mom.

“Hi, I’m Sean’s mom”

In the next weeks, and months, again and again through a maze of specialists, technicians, and departments, she spoke in that space where Sean’s voice should have been, but could not be. There were no text books for Sean, and he had no words of his own to tell them.  And so, she simply became his voice.

“Hi, I’m Sean’s Mom”

The words pushed back against a wave of busy educators, who mistook Sean for a child without a Voice.  The determined invitation of her voice caught each one, so they listened again, and looked again, and what they discovered in that second look at Sean changed them – that beautiful Being that had almost been overlooked, simply because he couldn’t speak for himself.

“Hi, I’m Sean’s Mom”

Over the years, Sean met the grocer, the baker, the teachers at school.  He met folks at the local pizza joint, bowling alley, the Church and the pool.  And each person, when they heard her voice, saw Sean afresh, as a person.  They learned to converse with him with other senses than their lips and ears.

“Hi, I’m Sean’s Mom”

it was a plea, a demand, a push – sometimes gentle but always firm – that drew people in to experience for a moment a kind of person they’d never witnessed before. They learned how to skip over the choreographed lies of social interaction and just be together with someone.  People experienced Sean only because of her.

“Hi, I’m Sean’s Mom”

Doctors said they didn’t know anymore what to do for the seizures that took from him strength and years, and paid him in pain.  She spoke at once as Sean, and as a dedicated mother.  She told of his symptoms, and interpreted his movements, made him real to the doctors and nurses.  And once they had truly met Sean this way, most would try a little harder to feel, to see more in their patient than flesh, bones, computer blips and beeps.  Each one of them uncovered themselves a little bit, and re-learned what it is to be human.

“Hi, I’m Sean’s Mom”

In the hush of the night a prayer escaped her heart, as it had ten thousand times before, for the relief that Sean could not pray for.  And at the insistent voice of her grief at his failing body, Heaven wept.

“Hi, I’m Sean”

A young man walked innocently into the brilliance of a new Spring Morning.

And the Good Lord smiled back, and said, “Yes, I know.  You’re Dianna’s Boy.  We’ve heard all about you.”

“We’ve been waiting for you.”

The peal of Sean’s laughter radiated with that Morning light across the heavens like through a prism, setting them ablaze with color.

Sense of Home

Inspiration seems to find me in the oddest times and the strangest places. This morning it was on the stairway, following my son up the stairway. Sean is severely mentally handicapped. This means that while he is capable of doing many things physically, sometimes he gets lost in the doing, forgets what comes next. He has a seizure disorder to go along with his other issues, which takes away his ability to hang on to new things he learns. He leans heavily on things he learned long ago, when he was young.


One of our big struggles in his daily routine is getting him up the stairway to the shower. It’s not that he lacks the physical capacity to get himself up, though it does test his endurance, but that he forgets how to do it. He is well over 6 feet tall, and almost 250lbs, so carrying him upstairs is usually out of the question. I am somewhat bigger than him, but even so, on the stairway, that size doesn’t make the trip upstairs much easier.

This morning I was trying to think of a way to explain to someone how to get Sean up the stairway safely. I was watching and listening to myself do what I do every day, to see what key element in it makes the whole thing work for Sean and I. It became clear after a little bit that I start by accepting that I can’t force him to do much. Well, I could simply push him up the stairs, being bigger than he, but when I start doing things for him, he stops trying to do them himself and focuses on hanging on to what he knows. Then we both wind up exhausted halfway up.


So what I focus on is his initial position. He’s pretty good at following repetitive things once he’s started, so I make sure he gets to a “home” position that then leads to him remembering the next steps (no pun intended) to moving up. I put his left hand on the rail, despite the fact that he doesn’t want to reach out. I put his right hand on the wall, against the strain of him trying to pull his hand back to his chest. Once each hand touches the holding-point, he relaxes that arm and grips it like he remembers how to do it again. When he’s all positioned, I tap on the back of his right hamstring which makes him instinctively draw up his leg, and then suddenly he’s in his groove, he has remembered what to do. He slowly takes over, lifts that leg, puts his foot on the next step, and shifts upward. As we go up, if he forgets what he’s doing, I tap that hamstring again. It’s always the same foot, he seldom alternates feet. Once he gets into position, and gets started, then step by step he makes his way up until he reaches the top. On good days, he does a little happy dance to celebrate making it up and then charges into the shower room. On bad days, I have to repeat the process for the next task, walking through the door, with its own “home position” and reminders that makes it ok for him to let go of the door jamb.

As we went, step by step up the stairway this morning, I got to thinking of other situations where this method is important to him. He has a certain way of getting into the car, one foot has to be in just the right spot or nothing else works for him. He forgets how to get in, so I take him by the hand, walk him in a short loop away from the car, and approach it again. Once his approach is right, usually he gets the rest of it right.

It didn’t take long for this thought process of mine to spill over into my own life, and thoughts about raising the many other children we’ve had, that have come through our home as foster kids, or been adopted. We often think of home as that safe place where we can hide from the world. It has come to mean, in our modern lexicon, a place to step out of the world entirely, to be ourselves without the world’s intrusion. And of course, it is that. But home is not somewhere we can stay, or even want to stay. I thought of Sean, and the “home position” there at the bottom of the stairway.  Many of our kids have come home again for a spell, to get their head back together, or to just remember where it is they come from.  Home is a starting place, a place to figure out where we’re at when we’re lost, so that we can get started toward the goal we remember again. “Home”, for our children, is not “Mom and Dad and a house”, but the collection of growing up experiences that gave them their sense of values, and goals. For each child it is different. But for all of them, Home is not a destination, but a good beginning.


And then my thinking spread to spiritual life. God has not spent a lot of time forcing me to do things, forcing things upon me that I could not handle. But He created me, and knows what I was created to do and what to be, in ways I only vaguely understand most of the time. He has spent some time over the course of my life sending me back to home, walking me in a little loop so I can figure out where to start, and orienting myself, remembering where I want to go, when I become hopelessly lost in the milieu of life.

For my children, most of whom have grown, I don’t hope to keep them here forever, though I love them and their company. But I do hope that when they become lost, they remember to come home, and that in that thought they figure out where it was they need to be, and which direction that was.  Maybe it’s as simple as “left-hand bannister, right hand wall, right leg up”.  Sometimes it is for me.

As for me – I realized, by the time I got to the top of the stairway this morning with Sean, that I have two homes: the one that I was born to, that gives me an awareness of who I am now, and where to start in pursuit of my life’s purpose, and the other that I am created to be, that for now is my destination, but when I get there, will again be my starting point.