The brothers of Duchenne: Watching my son begin to understand what DMD will mean

“What am I going to do when Matthew is in a wheelchair?”

There was desperation and fear dripping from these words. His eyes were brimming with tears and I knew that he was experiencing the sense of loss that I had experienced 5 years ago when Matthew was diagnosed.  

My son, Owen, is 9. He is old enough to grasp the difficulties that Duchenne brings, but young enough to process it in very selfish terms. He saw how the changes in his brother’s abilities were going to affect him. He cried as he mourned not being able to wrestle on the floor with his brother, the days when they would no longer chase each other, taunt each other and behave in the rough way that brothers do.  He got a glimpse into the future and it horrified him.  

I remember that feeling.

When Owen, Bobby and I talked about it, we did not sugar coat the effects of Duchenne, but did stress the honest hope that we feel. When we talked about the research, he perked up and said, “I bet those doctors can figure this out.”  I told them that I was sure that they would, but it takes time and a lot of teamwork.  

We talked about the race (www.parentprojectmd.org/milesformatthew) and he said that was one fun thing that has come out of Matthew having Duchenne. I cherish this response because I always want my children to see the glass half full. Finding something good in every situation is so powerful and it keeps us strong.

Duchenne does not just disable its victim; it disables and disarms all who love him. There is, however, some relief in sharing this burden with our son, however painful it is. It is not a secret, it is not unspeakable, and it is not taboo. It is part of what defines and drives our family and we embrace it in the sense that we all must own it. 

Nine-year-old boys are not often known for their empathy. This moment of pause, reflection and emotional outpouring was truly beautiful, to be treasured, because it is the greatest show of love and concern that a person of that age can give. 

So here is the glass half full: In a moment of painful realization came a connection between parents and child and a new outlook on family for our son. I believe Owen grew up a little last night. This is a gift to cherish.

Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, a wife and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy. 

Raising kids with spunk

Can you guess which one is my little man?

So today our little man, almost a head shorter than every other basketball player on his team, ran out on the court all fired up to play the last tournament game of the season. He was doing the masculine arm flexing you see NBA players do as they run onto the court along with a few chest bumps (in his case, chest/hip bumps) with his teammates. 

What he lacks in height, he makes up for in determination and competitive spirit. It probably comes as no surprise that he plays point guard. He’s agile and, like Wayne Gresky, he has a really good sense of where the ball is going to be. He’s always in the middle of the action.

He is also astute in knowing his weaknesses -- height and consistent shooting. He knows how to overcome them by dribbling well down court and passing to the kid who can shoot more consistently. Or when there’s a scramble for a ball, he grabs on tight and flops to the ground, pulling the bigger kid down because he almost always gets possession. Then he gets to his feet and gets away, running down the court faster than the other kid. 

Needless to say, his spunk is what makes it so much fun to watch him play ball.

However, this same spunk gets him in trouble at times. At school, at summer camp and even Sunday school, he’s had his fair share of discipline for being a class clown. Often times, he has an inability to contain his restless energy, he talks too loudly or he takes his competitive spirit to the playground. Sigh. 

As a parent it’s a struggle to navigate the balance between discipline and encouragement. But as I watch his team win the game and witness one of the taller players picking up my little man and slinging him over his shoulder for a court side celebration, I have to think that he’s going to be more than A-Ok with that competitive spirit and ambition. I think it shows that he is willing to overcome obstacles and utilize his strengths.

Tiffany Crenshaw is a  North Carolina native, wife, mother of 2 wild and crazy kids, and an entrepreneur. She loves her family, a delicious glass of red wine, girl time and the occasional spa treatment. As an enthusiastic member of Wednesday Night Whine, she rarely misses a “meeting” unless she’s traveling for business. She is the President and CEO of Intellect Resources, a recruiting and consulting firm specializing in the healthcare IT industry.