The Worth of a Soul
The absence of normal 'frees us' (emphasis added - read the entire essay here) by Ian Brown
Without question the most common reaction people have, when they find out I have a seriously disabled son, is “I don’t know how you do it.”
It’s an interesting reaction, because in many ways, the act of physically caring for a boy like Walker is the easy part. Walker is 14, looks about 10, and has the mental function of someone who is about two or three. It looks like he always will. He can’t speak, and because he can’t speak, I don’t know how well he sees or hears, or why he hits his head again and again if I let him, or where he’s in pain. He can’t swallow, so he has to be fed with a tube, and he can’t figure out the routine of going to the bathroom, so he has to wear a diaper. But those are easy problems to fix, albeit time consuming and sometimes a little dreary: a diaper is a diaper, and sometimes it is full and needs to be changed.
What I found more upsetting, practically from the day Walker was born, was a bigger and more unknowable question: did he have an inner life? Did he have any intentions, and therefore did his life have any purpose, any meaning?
That’s a hard question for any of us to answer, but it’s especially hard to answer for a boy who cannot speak or reason, and whose care consumes countless resources and many, many hours of human effort. Because I did that calculation too, when Walkie was an infant: if he lives at 10 per cent of human capacity, and if the care of him reduces my wife and I to 30 per cent of our human capacity, and if my daughter Hayley is set back 30 per cent, because of him—well, add those up, and you have two and a half lives spent to sustain the so-called life of one broken boy. Is that worth it?
. . . it has taken me 15 years to see my way to this conclusion—15 years to see through the exhausting demands of day-to-day care of a boy like Walker, to a redeeming value of his life. I can’t help but wonder why it took so long, or why I had to conduct the search on my own. I also wonder why the medical profession, and the care profession in general, don’t help parents toward these insights—as the church might have in the past.
. . . The value of the human spirit, even at its subtlest and most obscure, is a question the whole world always needs to question, and answer.
I do not fully comprehend all that Ian's life entails, but I, in my corner of the world, understand when he speaks of 'dreary' times. Though we are potty trained, and do not require diapers, we do have our occasional problems. Showering, even at this age, requires assistance. Meltdowns, which occur less frequently with age are more physically demanding due to his size, and take more of a toll. Hormones, anxieties, compulsions, and obsessions color our daily world - sometimes to tears.
I appreciate Ian's candidness, and my heart breaks and rejoices for him. It breaks when I consider the fact that for fifteen years he struggled to answer a question that 'the church might have' answered in the past. His are questions I never had to ask, because of my understanding of the Gospel, I always knew there was a purpose to life, for ALL of us. I rejoiced in knowing that he has found that the answer to the questions are YES, it is worth it, Walker does have an 'inner life' as he says, and that there is purpose in all of this.
My words fall short in trying to describe how I know, but trust me, there is meaning! I can only give you glimpses into my world, just as we only have glimpses into Ethan's. But we take those glimpses and run with them. We cherish them for all that they reveal, even if they reveal more then we can adequately describe in words.
This last week Ethan was on the computer watching a video. The video was a cartoon depicting the visit of Jesus Christ to the people on the American continent as detailed in the Book of Mormon. On a sudden, Ethan paused the video on this image of Jesus.
He got up, walked half-way down the stairs and leaned over the railing so he could see the painting we have hanging over the piano. He stood there staring at this picture for several minutes.
Evie noticed, and stood silently watching. As the seconds ticked by he just stared at the painting, then said, 'Huh,' and turned and walked back upstairs. Evie followed, and discovered the stilled image of Jesus on the computer screen.
We may never know what was going through his head as he stared at the two images of Jesus. But as I contemplate that incident, Ian's questions, and our answers to them, I am reminded of the words from a blessing Ethan received last winter:
. . . As you think about the Savior you will be given ideas on how you can follow him . . . your spirit will continue to progress and to grow towards its potential.