Good

All He Heard Was Music

Dawn Tucker
Like many new mothers I cried the day my son was born, but they were tears filled with sadness and fear. I knew there was a fifty-fifty chance my son would be afflicted with a genetic anomaly. Afflicted...why that word? It means to be made miserable by, cause problems or badly affect. My son's problems never made him miserable, caused problems, nor badly affected him in any way.

I had been born with a genetically inherited syndrome called Ehler’s-Danlos Syndrome. While the severity of symptoms can vary widely, the most common ones are stretchy, fragile skin and extra-flexible joints. I had passed it on to my son. We have loose, unstable joints with many dislocations, easy bruising, muscle fatigue and pain, and chronic degenerative joint disease. Having inherited the mutation, each of my children would have a 50 percent chance of inheriting the mutation from me.
Shortly after Gene was born the doctor removed each of his pinky fingers. Gene and I were both born missing the fifth metacarpal in each hand. In simple terms it means we are missing a bone in both hands that should be right below the pinky finger. Removing Gene's pinky finger would allow greater motion and use of his other fingers. He may be missing fingers, but he has never been missing in determination.

I worried what others would say. It is a mother's instinct to protect her child from physical harm. (Look both ways before you cross that street!!) Protecting them from emotional harm is harder. As I covered his hands up for his first baby picture, I wondered who I was really protecting, him or me? Cruel taunts from my elementary school days rang in my ears. I just wanted to protect my son from what I had gone through. Would he be able to do certain things? Would his differences keep him from achieving?

Memories of how hard he worked at every task flit through my mind. At five years of age, Gene struggling with his shoelaces. I was struggling to not jump in and help him. Having succeeded he looked up at me with a big grin and said "See, I did it!" Seven years old, he grasps a pencil clumsily. He maneuvers it in his hand so he can do his homework. He struggled but never gave up. Gene is ten years old and I hear the tap, tap, tap of a keyboard. My son was typing a book report. He grinned and showed me the finished product. I never dreamed he would be able to type.
After he turned twelve years old he wanted to play baseball. A stickler for rules he would stop a game midstream if he thought anyone was cheating. I see him gripping the bat tightly in his hand and *WHACK* he hits a home run. I find myself standing and screaming "That's MY boy!!"
My son has never come across a task he cannot finish. He is fiercely determined and possessed with a great desire to succeed. When I doubt he can handle himself the way the other kids can, he reminds me with a sly grin he can “take” his older brother Barry in a fair fight. Sometimes the younger our kids are the more you learn from them.

I almost cry when I hear his younger sister ask him “where did your fingers go Gene?” I do cry when I hear his patient response. “When I was younger I had an operation...” Later I ask my daughter if her brother explained why he was different. She told me “He isn't different mom… just special...he can do anything we can do...” My daughter walks off to play oblivious at how profound she can be. Years later when her and Gene are at odds, as siblings will be, I wonder if she remembers how patient and loving he was with her on that day?


I think to myself “she's too little to understand he is different and special.” Am I the one making him different in my own mind? Could I be holding him back by not letting him move past his differences? He is thirteen when he tells me in no uncertain terms that he is going to play guitar. His older brother plays bass and his cousin plays guitar and he wants to make music too. He tells me how they are going to be a band and how the crowds will be cheering for them when they make it onstage.

In my mind’s eye I see hours of struggling. I wonder if maybe he should try another instrument, like the drums? My son sighs and shrugs his shoulders saying “But, I don't want to play drums mom...I am going to play guitar.” He asks anxiously if he can get one for Christmas as it is right around the corner. I know he is secretly praying I will say yes. I simply say, “We'll see.” All I can see is the frustrations and struggles of him learning to play. I can hear him crying already. All Gene can hear is the music.

My son has grown before my eyes. He stands taller than me, his voice has changed and his hair has darkened some, but he still has that smile. I try to protect him still. My every attempt thwarted by his stubbornness. (Just like his mother) His determination is relentless in a way that sets him apart from everyone else, if it sets him apart at all.
My nephew is at my house with my older son Barry, playing guitar. They are practicing. I head towards the room though I know there is a “No MOMS allowed” rule when they are in there. Have you ever had a moment of clarity? A moment when you felt the hand of God, reach down and touch you? I had such a moment. A moment where I knew that even though I was the mother, that I could possibly be wrong. Gene never needed my protecting. All he ever needed was my love and encouragement.

When I opened that bedroom door, there stands Gene playing guitar. I look on in shock. My son gives me that mischievous grin I am so familiar with. “Isn't it cool mom?” he asks me. “I am playing guitar!” Well, he got a guitar that year for Christmas. No matter how far-fetched his dreams may seem to me, I never doubted him again.

He is in his twenties now and plays not only guitar, but keyboards as well. I was so busy worrying, I forgot to be grateful. Grateful my kids are all well and healthy. They all play an instrument. Me? I have a lot of earplugs. Shhhh, don't tell them.