Monday, July 13, 2015

When Life Changes, It Doesn't Mean it's Over

Paul and his guide dog, Chicago

I wrote this at the request of a dear friend of many years. Thank you for asking me to write it, Sarah Blake LaRose, and I hope it comes close to what you might have had in mind.  I took your suggestion to write about my sons' lives after losing their vision, and I let my mind and heart go wherever they might.

When Life Changes, It Doesn't Mean it's Over

When I was a young teen, some of us discussed the question, "If you had to be one or the other, would you rather be deaf or blind?"

Since I was already deaf in one ear, I figured I could handle the deafness. But blindness? Oh no. I had viewed myself as a writer since fourth grade. So, I thought, blindness would mean my life would pretty much be over. But it was just a game, anyway, kind of like asking, "Would you rather have your arm broken or your leg broken?" Yes, we asked that, too. And then we ran off to play.

Never in my wildest dreams did it occur to me that one of my sons would one day become legally blind or that, later, another son would become almost totally blind (only able to perceive a little light).

So, what about my childhood fears? Were my sons' lives "over"? Not hardly.

My son who became legally blind at age nine got behind academically for a bit, while the doctors worked out a diagnosis and while we arranged to get him adaptive equipment for reading. For us, personally, as homeschoolers, getting a little behind was okay, because we could catch up on our own timetable.

I'm not going to kid you. Of course his vision loss was hard for him! He couldn't play baseball anymore, and he'd been enthusiastic and a good catcher. He couldn't see the squirrels or deer someone would point out, just outside our back door. He was no longer allowed to go out and ride his bicycle by himself, and he had been more active than his siblings, so he suddenly became less active. There were many things that he lost, but he didn't lose his personal drive, and he adapted. I don't just mean he adapted and learned other ways to do things…although he did that, too.

He adapted to the joy of life as it had become now, rather than longing for the past. That doesn't mean he doesn't occasionally wish he could drive. And if someone offered him back the vision he lost, he would gratefully take it. But he doesn’t dwell on those things. He golfs with his dad on occasion. He walks with his white cane for identification. He takes the bus to his paid internship in accounting. He takes the train or flies for business trips, by himself, always with his confident walk and his friendly smile. He's active socially, and he is a leader in a church club and in a business organization at his college.

Twelve years or so ago, his life changed, but it wasn't over.

About seven years ago, another son lost his sight at age 22. He was an artist. Within a few weeks, he couldn't drive any more, and within a few more weeks, all he could see was some light.  Naturally, he didn't get very good grades that first semester that he lost his vision; but later on, he liked to say, with a laugh, that he got better grades after he lost his vision than before. Like his younger brother, he lost many things. He lost the freedom that went with driving and the joy of his art. But like his younger brother, he didn't lose the core of who he was. He was thankful for what he had, and he trusted in God, saying, "The Lord gives and the Lord takes away. Blessed be the name of the Lord."

He laughed as much as ever, and he enjoyed crazy adventures with his friends. Where his younger brother used screen magnification, he used a screen reader. He wrote stories; was active in leadership at college; graduated; and gave speeches at churches and schools.

Seven years ago, his life changed, but it wasn't over.

As some of you know, though, four years later, his life actually was over. He died in his sleep, and no one knows for sure why. Of course, as he would tell us if he could, his life wasn't really over, but only beginning. We believe a better life awaited him, and I like to imagine it with the ability to see beauty again and with the freedom that he had lost when he could no longer drive…the freedom he had regained in spirit even before he passed away.

But the lives of all my family changed this time.

How does life change when a mother loses a son? I don't know, really, because I am only one person, only one mother. For me, in the beginning, I cried easily and often; I obsessed over things I hadn't done for him in his lifetime, especially during those recent years; I worried over things I had said to people after he died and things they said to me; and I took wrong turns while I was driving to somewhere I had been a hundred times. I once drove away from the grocery store, leaving my purse in a shopping cart in the parking lot (fortunately, I got it back).

I can't say all of that has completely gone away, but all of it happens less now. I'm still a serious person but I always was a serious person. However, I was always a lover of life, too, and I still am. I'm still friendly; I still smile; and I still laugh at my own silly jokes.

Three years ago, my life changed, but it isn't over.

If you or your children have had major life changes, your experiences might be different than ours were. Some of it depends on individuals, and I'm guessing maybe some of it also depends on the kind of changes that have occurred too.

But sometimes I think we look at what happens in other people's lives, and we think, as I did as a young teen, that we could not deal with that particular trial, that life would be "over". I wonder if that very thought is sometimes what leads to fault finding thoughts. "I couldn't deal with that, so it wouldn't happen to me, or mine, right? So, it was someone's fault, right? So, I can prevent it, right?"

While we need to exercise some caution in life, most things happen because we are human: genetics, accidents, and so on. But we aren't each going to experience all the difficult things in the world, so there is no reason to go to the defensive-offensive mode. We can just say, "I'm sorry".

Is there anything else we can do? Thank you for asking, yes. This: Please don't run away. And believe me; I know this one from both sides. I still have a tendency to run away…or to stay away, if someone is suffering or has gone through a loss. After all, I might not know what to say. I might even – gasp – say the "wrong thing". (I've been known to do that a time or two, or a dozen or...).

You know what I've found in my own life? If someone says the "wrong thing" to me, I might get hurt or annoyed, but I'm usually glad for their presence, anyway. But if they say the "wrong thing", and then they don't come around after that, then I'm more apt to dwell on the hurtful thing they said, than I would if they continued to be there for me.

So, we can put on our moccasins and try to tread softly, and we can try to walk in their moccasins. But let's not take our moccasins off and sit by our fire when our friend's life has changed. Let's keep on being there for them, and especially if they have a harder time getting around, like my son who lost vision in college and was no longer able to drive.

From my experience, another thing we can do for those who experience a major or traumatic change is to accept it. When my youngest son suddenly lost so much of his vision, many people prayed, and I really appreciated that. But after we got a diagnosis - after we found out it would be a permanent loss - a few people would respond to that by telling me to pray to this saint, or pray that novena, in order to get my son's vision back. I told them: "Thank you for your prayers. The prayers are being answered. He has accepted his loss, and he is adapting to it well."

My feeling was kind of like this: I know it hurts you. But it hurts me more than it does you. And it hurts my son more than it hurts me. But we are going to go on living life as it is now.  And we will adjust to a new normal and a new life. 

Life has changed, but it certainly isn't over.

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