By Wayne Ogata
Recently, I returned home to find my son Alex (7) and daughter Tracy (16) arguing with each other. As customary, I turned to Tracy and told her she needs to understand Alex better and be aware of his limitations.
Alex was diagnosed with Ullrich Muscular Dystrophy back in 2009. Like other parents who have received this news, my parental instincts immediately kicked in and I found myself trying to protect him at every instance, perhaps a bit too much. I try to hold his hand when we walk outdoors, though he does not always like it. I try to carry him when we approach stairs, but he shrugs me off preferring to do it on his own. I tell him to slow down when he tries to “run” too fast, I even monitor his breathing pattern several times each night. His diagnosis has had a profound effect on our lives, but through it all, Alex remains a trooper. You see, I don’t think I have ever met anyone who tries as hard and challenges himself as much as Alex does, both physically and mentally. His favorite bedtime story is a math quiz. He says that he cannot sleep until I give him a math question. Really? Who does this? Alex. He is my buddy and an inspiration. When I do punish him, he just turns to me and reminds me, “Daddy, Buddies Never Break.” To this day, the phrase he has coined remains dear to my heart.
Recently, I was watching him take swimming lessons (true to his style, he insists on taking lessons with the other able bodied kids). As I watched him attempt to swim from one end of the pool to the other, kicking and flailing infinitely more times than the other kids yet advancing at a fraction of the speed, all I could think about was that he was going to drown. Why was the instructor not at his side the entire time? I was already mapping out the route I was going to take to jump into the pool and “save” him when I noticed his head emerge from the opposite end of the pool sporting a large smile and ready to turn around and challenge himself again. It was then that it dawned on me; perhaps Alex can stand on his own and does not need me to always be by his side protecting him. My buddy had shown me that I was acting very un-Alex like.
Back to the argument with Tracy. She often complains that I give Alex special treatment and that it’s not always fair. I have often said to her that no matter how unfair you ever think your situation is; keep in mind that nothing is more unfair than what Alex has to deal with each and every day. But, the reality is that Alex does not feel this way and perhaps neither should I. Perhaps this is just a perception I have created in my own mind and not the reality as viewed through the eyes of my children. You see, Tracy has truly been an amazing sister to Alex, often volunteering to look after him, agreeing to play various games with him when he is bored, and even including him in activities with her friends. She does not give him special treatment or view him as a disabled person, but rather as just her nagging little brother, just as I treated my nagging little brother. Perhaps she is the one who truly understands Alex.
I sometimes think as we get older, we tend to add more complexity to our lives. Perhaps occasionally viewing life through the eyes of children can help put things in perspective.
To all the children who have siblings with disabilities, I tip my hat to you as I’m sure it is not always easy. To my daughter, Tracy, I remind you “Buddettes Never Break, either!”