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Nothing Stands in His Way
As I sat outside in the garage watching the rain fall from the skies, my tears did the same down my face when the doctor confirmed the news I was dreading for the past four weeks. How could this happen to such a precious young boy, he was only four years old. He had dreams of being the best baseball player on his t-ball team. He wanted to be his school’s best running back they ever had. How was I supposed to tell him that none of that is ever going to come true? How do I tell him he’s different? That he is going to live in a world none of his friends will understand.
I took my nephew, Xavier, to get some tests done a month ago on his feet. He seemed to always be tripping over his feet, falling, and complaining of them hurting him more and more each day. The doctor was very nice; she didn’t grab his ankles too tight and kept him calm the entire time. That was until they told me they were going to need to take blood samples.
I sat in the chair, with my fingertips rubbing his thigh telling him the doctor had to take a few more tests and then we could go and get lunch like he wanted. At first, he was okay with what I had told him, but then the doctor walked in with a tray of cotton balls that looked like big marshmallows and long, sharp needles with different colored tubes aligned in a row next to each other. Xavier’s eyes grew as big as golf balls; he jumped into my arms and started to tell me over and over how he wanted to go home now. I told him how sorry I was but the only way to help him is to take his blood. I picked him up and tried to place him on the patient seat. He clung to my hair for his life, screaming at the top of his lungs, the ringing in my ear made my heart ache, his tears poured out of his eyes like a thunderstorm. That’s what he was at that point, a thunderstorm ready for destruction. I stayed up by his head while two other doctors came in holding his arms and legs from flaring around trying to stop the doctor from taking his blood. I kept repeating it’s going to be okay, that it will be over soon. Seeing him scream my name and cry for help made my body cringe, my heart sink, and my emotions sky rocketed. I felt like a terrible person doing this to him, but I knew we had to find out what was wrong with him and this was the only way.
It took about fifteen minutes for the doctor to take twelve tubes of blood from Xavier. She capped the last tube and placed a spider man band aid on his arm like that was supposed to make him feel any better. He sprang into my body and cried, over and over again. He was so scared, but it was finally over. He didn’t want to leave my arms the rest of the time at the doctor’s and I let him cling to me. He was like a baby monkey holding on for dear life to his mother, scared of the world around him. The doctor came back into the room about five minutes later with candy for him and papers for me. She told me it was going to take four to five weeks for the results to come back. She didn’t want to take that many tubes of blood, but she was testing for so many things she didn’t want him to come back and have to give more blood and go through the entire process again. I shook her hand, thanked her for what she had done and went back to the car with Xavier still in pain, arms around my neck.
Xavier had twelve tubes of blood taken from his tiny arm, the arm that I could already wrap my fingers around. He was tiny for his age, I couldn’t imagine how drained her felt. For the rest of the day he was by my side, asking me not to leave him. How could I blame him? The four year old was emotional damaged right now. I lay with him in my bed and cuddled him into me to give comfort. He fell asleep before the movie I put in could even start. As I looked at him he looked so vulnerable, so quiet, and so peaceful. I knew the doctor was testing him for things that could change his life if they came back positive. I kept my around him as I drifted asleep with him.
Xavier had been diagnosed with a disease called CMT, Charcot-Marie-Tooth disease. It is a genetically passed on trait. Everyone has one bad, and one good gene. He unfortunately got both bad when conceived. It is a disease that affects his muscle tissue in his legs, feet, and ankles. And slowly, it will affect his fingers, wrists, and arms. It’s something that only 1 in 2,500 people get, and when they do have it, it usually doesn’t start to affect them until their mid to late adulthood. Thankfully it is a disease that is not life-threatening, but it is something that there is no cure for. The doctor said since he was diagnosed with it so early he will probably end up in walkers or even a wheelchair.
I got through the phone call with the doctor, hung up, and cried. The happiest kid I know with dreams bigger than most people I know was going to lose the feeling in his feet and hands sooner or later in his life. He was going to have to adjust to everything he wanted to do, and the things he dreamed of, most of them were not going to come true. How do you tell a child that? How do you tell the boy you love with all your heart that he will never be like the kids he is around? How do you tell your pride and joy he can’t play football, ever?
My heart felt like it fell through my body to my toes. My body hurt, my hand shacked, and my world spun. The one thing I was hoping wouldn’t happen did. I sat in the garage holding my body from falling to the floor when the door opened and out walked Xavier. He took my hands, climbed into my lap, kissed me and asked what was wrong? I just looked at him, kissed him over and over again, held him close to my heart and repeated how much I loved him. He didn’t move, he let me give him all the love I could, but finally he took me into his arms. His tiny fingers and small arms wrapped around my head almost like he practiced this. I could feel his heart beat through my body, his breathing on my hair. I finally lifted my head, pulled myself together, held his hands and told him the only thing he could comprehend about his disease at age four.
“Honey, you’re different than your friends. You have something… unique about yourself, and we are all going to help you get through this,” I said.
Before I could finish my thoughts he looked at me and said, “Is it because of my feet? I run slower than my teammates, I walk funny, and no one else’s feet hurt like mine.”
I felt like the entire world came crashing down on me, I looked at him and all I could do is shake my head yes, kiss him, and pull him back into my arms. “No matter what Xavier, you can do whatever you want to do, I promise.”
“I know Aunt B, because you were right about me being able to play baseball, and your right about this too. I love you.”