Trials

It was near the height of Jesus’ ministry.  He was going throughout the land teaching people how to live, teaching them how citizens of the kingdom would act.  He had just delivered one of the greatest and most meaningful of parables, the parable of the sower, when he decided it was time that he and his disciples take a boat to the far side of the Sea of Galilee, perhaps about the time he would visit the land of the Gerasenes, where he would encounter a man possessed with a “Legion” of evil spirits, which looked suspiciously like some form of mental illness upon careful reading. 

But on that voyage, the Master fell asleep, much to the dismay of his disciples.  Their panic was brought on by the sudden onset of a storm which threatened to capsize their small craft.  They woke him, he rebuked the wind and waves, they were calmed by his will through his words, and then he turned to the fearful followers and asked, “Where is your faith?”

That question has stuck with me for a long time, because I have found myself asking that same question of myself on many occasions. 

I want to believe. 

I really want to believe. 

But sometimes, I find myself questioning the sincerity of my prayers, because too many of them seem to be unanswered.  I don’t ask for wealth.  I don’t ask for ease and luxury.  I pray for things like strength to overcome weakness.  Strength to deal with the daily issues encountered with raising a child with autism.  But as often as not, there is no great improvement.  In fact, recently, we have seen worsening behaviors as the professionals have been tinkering with his medication regimen.  The guys are supposed to know what they are doing, but I have come to understand it’s more like a process of trial and error.  Trial is easy.  But trust me, error is hard to live with.

And I keep praying that there will be some way to help him.  Yes, it would make my life better.  But only because his life is better.  And then maybe my wife would experience less stress.  And our family wouldn’t be constantly on the verge of emotional and physical and mental exhaustion.

It is so easy for someone who hasn’t lived this kind of trial to offer platitudes like, “God gave you this child because he knew you could handle it.”  Excuse me?  Try living a week with the outbursts, meltdowns, hair-pulling, spitting, kicking, hitting, constant yelling, and constant vigilance to protect both him and the rest of the family and the house and the pets from harm….  There is no relaxation until he goes to bed, and lately, since a change in medication, he doesn’t sleep like he used to.  He doesn’t go to bed and stay asleep.  He gets up and starts another round of difficult behavior when we need to be resting.

We’d like to think that he is usually better in school or daycare, but he has his moments there.  We’ve missed more than a little work because of suspensions.  We live in fear of every phone call.

There is no joy.

There is no peace.

There is only the dread that this will never improve and that he will someday reach a point where we can no longer physically control him.  What will we do then?

It’s easy to say, “The Lord will provide.”

But that seldom happens with autism.  At least not in any visible, sustainable sense.

My wife has a full time job teaching and another full time job keeping track of appointments.  I get to be the muscle when needed, and the chauffeur to many of the therapies.  Well, someone may say she needs to quit her job and do this full time.  And then we couldn’t afford all the therapies he needs on one paycheck.  That’s right, not everything is covered on insurance.  We pay a lot out of pocket.

I’m not trying to garner sympathy with this discussion.  I’m trying to show the reality of autism.  It is enough to test your patience and test your faith and your perseverance.  James said to count it all joy when you face trials.  But James’ trials were not indefinite.  Even if he faced death, the trial had an end.  If we can’t find a way to adequately provide for our son after we are gone, this trial extends beyond death.

And until that point, there is the stress.  There is the heartbreak of seeing him rejected by other kids.  There is the heartache of realizing that although we are doing all that we can to help him, the positive results just aren’t apparent.  There is the conflict of parents with child, parent with parent, parents with teachers.  There is the joyless existence. 

For a sibling of autism to grow up in a house with this much stress and no joy is not fair.  She didn’t ask to be the sister of an autistic brother.

And that is but one facet of the ever present guilt. There is always the guilt.  I was the one who wanted a second child.  I was the one who thought it wouldn’t be fair for an only child to deal with the problems of aging parents later in life.  And then there is the guilt of realizing that it was possibly, maybe even likely something I did, some exposure to a chemical or radiation that may have led to this.  Sometimes, a little knowledge really hurts.

I want desperately to believe that God is watching, but much of the time, it feels like he is looking the other way.  I want an answer that isn’t “No” for a change.  I want to see that famous “way of escape” Paul promised would be there.  So far, there is no glowing exit sign marking it.

I want to believe that God is listening and preparing a big change to hit at any time now.

But maybe I need help realizing it.

Would more prayers in concert benefit?  If I pray and you pray and scores or thousands more pray, will any possible doubt be canceled, or will the smallest shadow of doubt spoil the whole exercise?  Faith is a hard thing to maintain when you see no results.

Make no mistake, I’m not blaming God.  I’m not like Job.  I’d just like to know we’re not in this alone.  A little glimmer of hope would build a lot of faith and help me keep going.

But no matter what, I will keep going.  And I hope the writer of Romans was right when he said all things work together for good.  (And, no, I haven’t forgotten the qualifier.)

So I’ll ask myself again that question Jesus asked: “Where is your faith?” And when I feel my faith waver, like the disciples, I’ll again make the request to increase my faith.  Maybe bigger faith here will translate into better resolutions.

And maybe someday, when all is made new, I’ll see my son whole and perfect, like every father wants for his children. 

But I sure wouldn’t turn down a little preview in the here and now.

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2 Responses to Trials

  1. Doris Lee says:

    I have been racking my brain for several days, trying to come up a with some comment that would offer encouragement and hope. Honestly, I have nothing. I guess the folks that give advice are trying in some way to give comfort and justify a reason that you were given an autistic child. I guess sometimes people just don’t know how to say “I am so sorry” or ” is there anything I can do?” and leave it at that. In the last 2+ years in dealing with a Mother that has had numerous health problems and a step-father that has some issues with health himself, I can relate to the feeling of hopelessness. I guess all I can do is sympathize and tell you again how sorry I am that autism happened to your family. Don’t beat yourself up, it wasn’t your fault.

  2. Darrell Ray says:

    Thanks again, Doris, for your kind words.

    As I said, I’m not looking for sympathy in this post: I want people to understand what autism is really like for families. So many times, we see the TV version of autism with maybe a mild meltdown or some despondent, self-stimulatory rocking or something like that. Or maybe that really cool sort of savant expression, with extreme math skills or musical talent. But most autistic people aren’t like that. The unpredictability that some people show makes you stay focused all the time which may lead to fatigue and even exhaustion, or potentially pay the consequences.

    I have often reflected on how much I admire you. Your mother is so fortunate not only to have a daughter who can help out as you do, but a daughter who is so willing to help, as well. Our situations are not entirely dissimilar. We do what we do out of love. But sometimes, the burden is almost more than bearable.

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