Of Broken Lives and Broken Dreams

NOTE: This post is not a cry for sympathy, or just random, self-absorbed, self-pitying or venting.  This is real.  This is what it’s like to deal with a never-ending stress every day of your life.  Many people have no idea how much baggage we carry around as parents of a special needs child.  We don’t have extra skills or abilities to deal with it.  What we have is simply stretched to the limit and beyond.  And our situation is far less severe than that of some.  But I wanted to give you a small glimpse of how life looks from the inside of this particular fishbowl.  It’s not always pretty.

Life happens.

No matter what the best-laid plans may be, there will always be something that will come along to upset the apple cart, and all the polished produce goes flying beyond your reach, becoming bruised and maybe even damaged beyond use.

When I was a young man, like so many other young men throughout history, I dreamed of finding a wife, starting a family, having a quiet but successful career, growing old, retiring, enjoying life, reflecting…. I dreamed of normalcy.

Long story short, the first part happened, and so did the second, but after that….oy.

My wife and I had both spent years in college and grad school and beyond, preparing for a career in higher education. We met soon after we both were hired into the same department at a middle sized, student oriented school. We became friends. And good marriages are made with good friends.

After our first child was born, we discussed whether or not our family was complete. Ever the pragmatist, I suggested that two children would be a good number, so that when we get old, the burden for decisions about our care would not fall on one. So we had a second child.

Then, the world caved in. That quiet life to which I aspired became a life of not-so-quiet desperation in what seemed like the blink of an eye.

Our son was slow to reach the early benchmarks of development. His mother saw it, I refused. He continued to experience developmental delays. His mother saw it, I refused. With each new problem that cropped up, it became more and more difficult for me to keep my eyes closed.

And then one day, we were faced with the diagnosis of an autism spectrum disorder.

The last several years have been filled with medical appointments, therapies, meltdowns, school suspensions, school conferences, more medical appointments, showdowns with disrespectful people in public, the odd police report…. In short, a nightmare of sub-epic proportions.

The epic part may yet arise.

We have experienced more lows than highs through the years. More than once I have nearly reached the end of my rope. And more than once, the stress on our marriage has been so severe that I have wondered if staying together was worth it. Of course, the realization that one of us would then be even more responsible for the daily care and upkeep of a child with autism was more than I could take. I couldn’t do it alone. And I know that she couldn’t either, nor should she. He is our responsibility. We must both share in it.

I have seen figures that the divorce rate among parents of children with autism is in the vicinity of 80%. Recent studies have disproven that figure, and the actual numbers may be lower than the national average. One writer speculated that it may be because of the support the couple provides for each other. But if I were a betting man, the scenario I just described is more likely the reason why. The marriage may be in shambles, but the shame of running away and the sense of responsibility are so great that a person of integrity will carry on despite the pain and agony every day may bring. As trite as it sounds, it feels like you stay together for the sake of the children. You hope for the best. You hope to rekindle civility if not passion; friendly tolerance, if not sustaining love.

The deeper pain there is not the loss of romance, although that’s stressful in and of itself. It’s in the terrible feeling I get sometimes that I may have lost my best friend, and I hate autism for having come between us. Make no mistake: I love my wife. But after the third argument or sternly serious (and usually well-deserved) “discussion” of the day regarding my inadequate actions and poor displays of parenting, I sometimes wonder if she still loves or even likes me anymore. I can’t blame her. She is the mother lion defending her cub.

The stress of trying to physically manage a boy who is big for his age, his weight disproportionately so because of the vicious side effects of medications, is getting more difficult with every day. He has outgrown my wife’s abilities, so the physical redirection tasks have fallen to me almost exclusively. Outbursts and meltdowns in public are harder to contain. Physical interventions are misinterpreted by well meaning people who think the child is being abused or abducted. The indignity of having the police called is one of the worst things I have experienced, but then it is not out of the ordinary for parents of children with autism in today’s society. Recently, I have started developing a lot more pains from overstressed muscles and tendons. I often reflect that this kind of parenting is a younger man’s game. And I’m never going to get any younger.

The stress of preparing for the future is daunting for anyone, but when autism is factored in, it goes off-scale. How will we provide for our child after we are gone? For typical children, there is hope and expectation that they will grow up, get the training they need to get a job, find a job they love and become successful, even more so than we have been. But the future for a child with autism is not as bright, no matter what rosy pictures are painted in the movie of the week.

Through it all, we are expected to be happy and involved and engaged with society. The reality is that we are prisoners of autism. Sometimes, it seems that for every step we make in progress, we lose two in other things. Trying to make sure a sibling gets enough care and attention is hard, and there is always the nagging question as to whether we have done enough for either of them.

When your life feels like it is in a downward spiral, faith should be a refuge. I have no complaints about my fellow church members at the tiny congregation where I worship. They have shown nothing but love and concern as we have gone through this crucible of a trial, and I love them dearly for it. My concern is with the specific emphasis of the teaching that goes on in so many churches. Sometimes I come away wondering why I bother anymore. The teaching focuses more on frequently ineffective evangelism and first principles and minutiae of doctrinal differences among denominations and less on things that I, for one, so desperately need. The emphasis is on getting people in, but when they get there, they are supposed to be fully self-sufficient and functional to make the rest of the trip on their own. Too often, the teaching they get deals more with the “correct” organization of the church than dealing with real-world trials and problems.

There are so many things I need to hear from a pulpit, and so many things I either don’t hear or don’t need to hear. I need practical things that help me get through the next hard day and the next endless week, or even the next public meltdown. I need to be encouraged to keep going even when it feels like I can’t go on at all. I don’t need to be told that many of the painful thoughts and feelings I have revealed in this very essay could get me eternally damned. I need to know I am not alone, that God really does care about me, and about my suffering family, and that things can get better. I don’t need to be told to buck up and pull my weight. I need to hear ideas and suggestions for dealing with this difficult, soul-quenching life, not a constant barrage of dogmas and damnation.

When you get right down to it, life is more than church membership. It extends beyond the doorway of the so-called “sanctuary.” It’s out there in the streets and in the home and in the workplace and in the marketplace where people interact, maybe in tense conflict. What spiritual armor will protect me from the slings and arrows of outrageous fortune?  How do I cope with all I have to deal with, day in and day out?  Why is there so little emphasis—especially in the conservative churches—on helping people in the here and now? Why did Jesus heal the sick, and relieve people who were oppressed and afflicted with many other things, from accusations of sin to evil spirits? It was not only to show his power and divine nature. It was to show his compassion. I need that compassion and understanding and deep comforting help.

I don’t think I’m alone in this. I think many other people are feeling the same thing.   I need help with this life. If I can’t fix my life here, I’ll never make it to the next one. And just focusing on the sweet by and by only means admitting defeat in the not so sweet here and now. It means we give up on trying to make things better here, because all of our suffering will just make that ethereal bliss of heaven sweeter.

I can’t buy it. I can’t give up, and I won’t. But there are things I have come to know as I have floundered about these last years in a seemingly losing attempt to find my way. In order to get to where I need to be, I need more action and less axiom. More faith and less formula. More compassion and less condemnation. More Savior and less system. More love and less law. More emphasis on the church family and less emphasis on the church organization. More Christ and less conflict.

“Pray about it.” I have. “Work on it.” Always. But sometimes, I just need to shout down the pain and stress and turmoil.

We will continue to provide everything in our power to help our son. But we need to remember to save something for ourselves and for each other, too. I know Jesus never promised perfect comfort in this life. He told his friends to expect hardship. But he also told them to love each other and bear each others’ burdens, no matter how heavy.

Right now, I’m about as broken as I’ve ever been. My hopes and dreams lie scattered, shattered and fading. I could use some mending.

Oh God, I could use some mending.

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