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A Life of Meaning

By Marianne Miles

Yesterday, our pastor told of interviewing survivors of D-Day, the allied invasion of Normandy during World War II. He told how the survivors of this horrendous battle viewed their future as they descended on the beaches, already strewn with bodies. They knew that this may soon be their fate. However, instead of lying down and joining the fallen, they fought to give their deaths meaning.

One soldier said, “Assured of death, we turned to fight for the possibility of a life given for meaning.”

As parents of special needs children, we may have a similar experience—or not. Sometimes we don’t realize that our child’s prognosis dictates that our dreams for them are, in fact, dead. We hope for another test that will reveal our child is perfectly normal after all. The first, second and third confirmations of her dysfunction were…well, wrong. And she will catch up with the rest of the “normal” people around her—soon. Right?

In the film, A Band of Brothers, about one company of the D-Day soldiers, a sergeant explains to one young soldier why he balked instead of going into action. The sergeant says, “You just haven’t realized you’re already dead.”

It’s not easy for us to face the truth when the truth hurts so very much. I know. The loss of the dream we had of this child to grow, be accomplished, marry, have kids, or whatever else one imagines—flies from our fingers like a ladybug we have imprisoned if we loosen our grasp. The truth is, those dreams already died with the birth of our child.

I understand denial is a normal part of accepting loss. Giving up the dream of your child functioning well does not die easily. This can be as true for the professionals who work with our children as well.

I read an account recently by a special needs counselor who worked for years with a girl who had Turner’s Syndrome, a dysfunction linked to a missing chromosome. This condition creates many problems, but for one of the counselor’s patients with this syndrome, the girl had no spatial relations. The child had astonishing language skills for a fourth grader, but her spatial relations deficit made math and the concept of numbers unattainable. Happily, the counselor developed a way for the girl to compensate for her inabilities, using her abilities.

When the girl had grown and was looking for colleges, she returned to the counselor to seek her advice about which college to choose. The counselor reveled in the girl’s success and gushed, “You should choose any college you’d like. You’re totally normal now.”

The girl answered, “No, I’m not. I still have Turner’s Syndrome, but I have learned ways to cope with this… and much more. You see, limitations provided opportunities for accomplishment that otherwise would not be possible.”

The counselor could not help return to the preconceived dream that a “normal girl” was the goal. The girl understood that dream died a long time ago, BUT SHE had turned and fought to accomplish a life of meaning, exactly as God had given her. The young woman certainly would have chosen not to have Turnder’s Syndrome, if given the choice, but she readily embraced her fate with the courage of one who chose to create a life of purpose.

It takes a huge amount of courage to die to ones self in battle. I cannot pass this idea without giving thanks to the military personnel of our country who have given this gift so freely to our nation and my personal welfare. I thank God for them.

Are you a hero? Look in the mirror. Have you allowed the glorious dream of your special needs child being “normal” to die? That’s huge, isn’t it? I hope you have found the courage. I hope, for your sake, and your child’s, that you have turned to fight, and encouraged her to fight, to make her life matter, just as God intended. I urge you to fight on. Leaving your dreams behind, as the D-Day soldiers did, for a life filled with meaning.

©2009 Marianne Miles. All rights reserved. Used by permission.

Marianne Miles is a free lance writer intent on bringing comfort to mom’s of special needs kids. As she and her husband raised their children, including a son with special needs, Marianne developed a passion to support hurting mothers. Her message revolves around the love and provision of God, even in times of trial. Marianne has worked as a volunteer in the public schools, home school mom, and a teacher in a private school. She writes on the subjects of family and education in the form of devotionals, magazine articles, and poetry. Marianne welcomes reader’s comments and publisher’s questions at Marianne_Miles@yahoo.com.