75: Wrestling with Perseverance

75: Wrestling with Perseverance

From Chicken Soup for the Soul: Family Caregivers

Wrestling with Perseverance

Think left and think right and think low and think high. Oh, the thinks you can think up if only you try!

~Dr. Seuss, Oh, the Thinks You Can Think!

My boys love to wrestle. The youngest is the toughest—Ben uses all of his stout, muscular three-year-old body to bring his older brothers to the ground. My middle one, five-year-old Knox, is more cerebral; he gives play-by-play of who’s doing what and whether he’s stuck. My oldest just enjoys being in on the game. His secret weapon? The ear-twist. James Dylan’s fingers are unusually long and contracted, making for a unique pinching grasp sure to elicit lots of yelps from his stepdad and younger brothers.

James Dylan’s name has been shortened to “Dee.” He was diagnosed at age 10 with a degenerative neuromuscular disease. We called him James Dylan when he could say all three syllables. Around age six, we shortened it to James D, as he said “Nane D” back then. By age nine, he could only say “Dee,” so that’s what we’ve been saying for the past six years. Because Dee doesn’t know how not to smash his brothers during wrestling matches, Daddy Stan usually takes him down first and lets the others pile on top. It’s a sandwich that always brings a smile to Dee’s face and mine, too—until I think they’ve had enough. Then I plead with my husband to let the boys up.

Letting up is not something I am accustomed to doing when it comes to my eldest child. For eight years, he was my only child, and his development was my focus. He is developmentally delayed. I fought the school system’s label of mental retardation because from my experience that was the one label that caused educators to give up hope of progress. Fighting prejudice against his inabilities became another focus because I knew my son. His sense of humor, the light in his eyes, his antics to get what he wanted made me know that he could and would learn to be more independent than doctors and teachers wanted me to believe.

Then the seizures began, and his balance deteriorated. Although I was still taking him to physical, occupational and speech therapies and doing exercises at home, including an oral-motor program a speech pathologist friend designed, his word list shrank from 150 to 45 recognizable words. He went from wearing leg braces to help him walk at age three to needing no help at age five to needing leg braces again at age 12. Something was wrong.

Then I saw the evidence with my own eyes. The MRI done when the seizures began showed a cerebellum with a nearly normal cauliflower-like appearance, but just three years later, it looked like an oak tree in winter. Too much space. The neurons that typically renew themselves were refusing to do so. My son with the limited self-help skills would sooner or later have no way of helping us help him.

Each summer until he was 10, I attempted toilet training with vigor. This was going to be the year, I would tell myself hopefully. Each year, I would feel we were making progress. Each time I picked up packages of diapers, I would say to the clerk, “I don’t think we’ll need these much longer. He is becoming more and more successful.” But when I learned that his condition is degenerative, I was tempted to give up. And I did for four years. If he couldn’t stand on his own or pull up his pants by himself, what was the use of teaching him to use the toilet? Mess after mess, I would cry inwardly to God, “Why? I am going to have to do this for the rest of his life. Why can’t he learn just this one skill?”

And God answered as He often does in unexpected ways. Today, I did something I haven’t in four years—I pulled out the toileting schedule. Dee really has been more successful lately. Maybe we can try this again. My old optimism is coming back. God has given me hope. God is persistent in that way, giving me small, unexpected victories to help me persevere in my care for Dee.

A few weeks ago, Dee underwent a surgery to remove two of his salivary glands and ligate two others, leaving only his sublingual glands intact. For the first time in his whole life, I do not have to change his shirt four to six times a day. He does not carry a rag, handkerchief, or sport sweatbands to wipe the saliva from his face. Occasionally, if he is listening to relaxing music or bending down, a line of saliva will begin to form, but with a tactile cue, he will wipe his face or use his lips to bring the drool under control. He appears more alert and more talkative to others, though he is the same boy he was one month ago. It is only the perception others have of him that has changed. They now see him as I do: a bright-eyed, handsome, friendly teenager. And their excitement about his “new” potential has encouraged me to challenge him once more. The more I expect, the more he will accomplish. And I unreservedly believe he will master the art of staying dry, provided I trust God for the patience to persevere.

Perseverance is something Dee certainly possesses. I’ve been known to try to sleep in as I am not a morning person. But Dee rises with the rooster, even before the summer light. One morning, he was hungry and wanted me to get up to find him something to eat. He first said, “Eat. Eat.” Then he turned on the light in my bedroom. Then he opened and shut the microwave door in the kitchen. When that didn’t work, he found my keychain on top of the microwave and hit the alarm button on my car key. I jumped out of bed and poured that boy some cereal after I stopped the alarm. I know my neighbors did not appreciate the 5:30 alarm, but Dee enjoyed watching his mama move 10 times faster than usual.

My mother used to repeat the old adage, “If at first you don’t succeed, try, try again.” With Dee, it’s try, try, try, try, try, try, try... again, just as God in His mercy and everlasting love forgives, loves and teaches me again and again. Though the lessons may be trying and sometimes especially so, teaching my son to become independent is an endeavor worth every try.

~Ginny Layton

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