Wednesday, June 12, 2013

Drastic Reduction

Part 2 of an on-going series explaining what it's like being the father a severely disabled daughter.

Watching dreams die is a hard thing. Dreams inspire our endurance. They give meaning to mundane labors. They energize us with the expectation of reward. And when they die, they seem to take with them some portion of the human soul, leaving in their place a heart prone to self-pity, doubt, bitterness, and despair.

Watching my child succumb to the effects of A-T has been like watching the death of so many dreams, and not just mine. My daughter, my wife, and my other children have all had to say, “I guess we will never get to do...or have...or be...”

Some dreams are pretty silly. I mean, is it any loss that we never get to go waterskiing as a family? Not for us. Our interests lie elsewhere. But what about other life-defining events? Marriage? Grand-children? The ability to walk at a graduation ceremony? Drive a car? Live self-sufficiently? Swim? Eat ice cream without choking? These are lost realities for my daughter, and they affect the whole family as we live each day with her losses.

I grew up under parents who encouraged me to expand, to broaden my horizons, to try new things, to take on new challenges. They inspired me with constant reminders that I “could do whatever I set my mind to.” And they gave me opportunity through such things as music, sports, and a list of hobbies that captured my attention—if only for a time—like model trains, leatherwork, wood-working, scouting, hiking, biking, and skateboarding (which I did well enough to be cast in a low-budget movie).

This made for a wonderful up-bringing, and I took the “I can do it ALL” mindset into adulthood with panache beyond my years. I expected life to turn out big; I believed all the obstacles would strengthen the glorious outcome and I would finish in an enviable place of success and triumph in a number of inspiring venues and endeavors.

Then came the introduction to disability brought on by my daughter's diagnosis. To be honest, it took far too long for me to recognize that our lives, from that moment on, would be more about the loss of opportunity and the restriction of activity rather than fulfillment of ambition and expectation—in short, the death of so many dreams. My expansive view of life was forcibly reduced. Indeed, I have been forcibly reduced, and in truth, I'm grateful for it. But more about this gratitude in a moment...

I remember the time our minivan arrived from Arizona where the wheel chair modification was completed. The first thing I noticed was the missing hitch. “Where's my hitch?” I asked the technician.

“What do you need a hitch for?” was his response.

“The trailer! How're we going to pull the tent trailer without a hitch? How're we going to go camping?”

The tech gave me a funny look, one I have since seen in many other faces. He didn't say words, but he could have. “How're you going to go camping with a kid in a wheelchair?” Zing. A dream dies. And what a dream! I grew up camping. I always camped on vacation as a kid. It's what we did. And I knew I would take my own kids camping and would teach them how to fish and build fires and play Boggle by lantern and cook eggs and potatoes and bacon in one pan and call it “casualty” and enjoy it. But not now. It would have been possible, of course, but so difficult. Too difficult. And how could I think of camping as a family hobby without the whole family present?

I saw that same look in the face of the nurse who handed me our first can of “Thicken-it.” She was answering my stupid questions with a measure of exasperation: “Mr. Achilles, your daughter must never drink untreated fluids again. If she does, she will aspirate. It will infect. She will die.” Ouch. There went all simple dreams associated with drinking—a cup of hot chocolate on movie night, a sip of Martinelli's at a wedding, the convenience of handing a bottle of water to the back seat on a long, hot car trip. Gone. Now our life is run by the schedule of a G-tube and the necessity of a pump. For 12 years.

More than any other face, I have seen that look in my wife as she reacted to my tendency for spontaneity. How many countless, quick ideas have been met with that incredulous expression? “We can't do that. What about Cathryn?”

The death of some dreams has not kept me from coming up with new ones. And God has granted to our family the fulfillment of many wonderful hopes. He's given us new, exciting, and unique opportunities that go hand in hand with Cathryn's disability. But the simple reductions that seem to occur daily continue to put me in my place and remind me that I have a higher calling than my own self-actualization. I have a needy family for which to care, and they need my service regardless of how I feel at the moment. They don't pity my feeling “reduced.” They simply expect me to be there for them when they have need. And I hate failing that calling more than I hate the reduction it has brought to my ambitious life.

I suppose if I were to categorize the reductions, it would look like this:

1. I've been reduced to the day.

I have always been a forward thinker, a visionary. I see things more for what they will be rather than what they are. I never finish one vacation without the next one on the calendar. I am always looking forward. I pass an old run down house and see the restored home and think about how cool it would be to live in a place with such character. My wife has made me promise to never buy such a home, because she is not a visionary, and would not see what it would become. She would be stuck living for years in the way it truly was, all the while losing hope that I would complete the restoration. She's a realist. I need her. She keeps me in check.

But with my daughter's illness, I have had to set aside my tendency for focusing on the future. What future do we have with Cathryn? She will die from A-T. And until she does, she will slowly continue the degeneration process. And when she's gone, what joy will we have in her absence? We have difficult tasks leading to a difficult death and future freedom we do not wish for. What is left but to focus solely on the day at hand?

We still make plans, but they are always made with the knowledge they could change in a moment depending on our daughter's condition.

This is good. Jesus Himself told us not to worry about tomorrow. “Sufficient for the day is the trouble therein.” Boy, that's for sure!

But this reduction has not been a choice. It has been laid on us in love.

2. I've been reduced to the need.

I've always been an ambitious man. Big vision calls for big plans. I don't like sitting still. I want to accomplish significant things during my limited time here.

Guess what I do a LOT of now? Sitting. Waiting. Waiting for Cathryn's meds to finish. Waiting for her doctor to come in the door. Waiting for her to get ready to leave the house so we can go some place together as a family. I sit and wait because the moment I become involved in actually doing something else of value—that very moment is the moment I will be needed. I might be called upon as my household alter ego “Transportation Man” to carry Cathryn to some other location in the house. Or sent fetching the glucose meter from the bag. Or loading the car. Or unloading the piece of luggage that I loaded too soon because it wasn't fully packed yet but I didn't know and I got tired of waiting...

My priorities have all changed. Everything I do now is examined in light of the need in my home.

I love to play golf. I don't do it very often, and never without some kind of invitation. I can't. It would take me from home for hours on end. If there's a purpose behind it—like getting to know my boss who is an avid golfer—I can go. But to initiate it? To plan hours away from home doing something for enjoyment's sake while my wife bears the brunt of our daughter's care? No. No, unless I so desperately need some time away that the relaxation becomes the priority, if only for a short time.

The need dominates everything. But this is good. I have been forced into a situation where I must examine everything I do. I must carefully prioritize my life because I can't afford to short-change my family.

3. I've been reduced toward humility.

Here's why I'm grateful to God for all the reducing. I know enough about myself to see the benefit that has come to my soul. I'm a proud man. Pride colors every part of my being. I am prone to selfishness and ambition. I love being proven right. My pride is fed by success and accomplishment.

Every derailment of my plans dices my self-confidence and smug self-satisfaction by forcing me to place the needs of others first and subject my ambition to the call for loving service.

I know what the Bible teaches: those who want to be great in God's kingdom are to be servants here and now. Biblical leadership is done through service. Spiritual advancement is gained by dying to self, not living for self. “Through love, serve one another.”

God has replaced my dreams—even silly “wish we could all go camping together” dreams—with His plans for me. He intends for me to be a godly man, a compassionate man, empathetic and discerning, careful and sober and loving. He wants me to be filled, not with self-confidence, but God-dependence. And in the process He rewards me with His joy.

If I am ever considered by others to be a humble man—a label I truly never expect—it will be because God has used my daughter's disease to humble me. And since “God is opposed to the proud but gives grace to the humble,” the reduction has been more than worth it in every way.