He struggled to free himself from my tight embrace. He was terrified and pleaded with them not to hurt his little brother. Undeterred they continued preparations to cut into my younger son’s skin. My oldest son’s reaction overwhelmed me and my grip began to loosen. It was a horrifically beautiful moment that illuminated the bond of my boys in a way I never thought possible. A moment that taught me the power of struggle and family.
Truthfully, the biopsy hurt. They gave us freezing gel before taking the skin sample, but it was still very uncomfortable. The doctor assured my husband and myself that the kids’ skin was softer and thinner, so they would feel less during their biopsies. When the time came for my five year old to have his turn, his wincing face told us that the procedure was not pain-free, but it was also not horrible. His tears seemed to be more out of fear as he watched the doctor cut a piece of skin off his arm.
I was excited for what information this procedure might yield about their dystonia. But, it was yet another procedure and I was anxious that my sons would be mad at us for subjecting them to so many tests. I was unsure how they would respond to the experience of being forced to allow someone to cut them. But, none of the issues I worried about were a problem on the day of the test. After watching my husband and I go first, my oldest seemed to understand what the test entailed. He accepted his fate and was so brave it made me proud. What I was not expecting was his reaction to his little brother’s biopsy. I assumed he would find comfort in the fact that the whole family was going through this together. But I was wrong.
“I do not like this! It’s scary” he said to me with tears running down his face. I hugged and kissed him and told him it was all over. The doctor put the band aid on his bleeding arm and told him what a great job he’d done. When she was finished she asked my son to switch places with his little brother. But instead of relief, he looked panicked. He sat there frozen momentarily before pulling up his other sleeve and said, “I don’t want you to cut my brother. Do me again instead.” It was a brave and selfless move that caught the doctor by surprise. She smiled softly at him and explained that she needed both of their skin because their bodies were unique and could tell her different things. But my son was too emotional to cooperate. He walked over to his brother and protectively placed himself between him and the doctor. “Please. Don’t hurt my brother,” he pleaded with tears rolling down his face. I went to pick him up and told him that this had to happen. He seemed to calm, but struggled to free himself from my arms the second my husband sat down in the procedure chair with my youngest son. I was not expecting such a protective response and I was unsure how to respond. So I didn’t. Instead I watched in an emotionally paralyzed state as the bond of my boys manifested in a way I was unprepared for.
Overpowered by an insanely strong five year old, I was unable to keep my grip on his flailing body. It only took a minute for him to free himself and run to his baby brother. Except rather than try to stop the test, he did the unexpected. He held his brother’s head and sobbed, “I’m so sorry. I’m so sorry. I tried to stop them, but I can’t. I love you. I’m here.” I wrapped my arms around both my boys as the doctor cut into the soft pink skin of my baby. My oldest son squeezed his brother tight and just kept repeating “I’m sorry. Don’t worry, I’m here.” Then came the awful yelp from the skin being punctured. My oldest son didn’t freak out like I feared he would. Instead he forced his two year old brother to make eye contact with him and assured him it was almost over.
Once the band aid was on, the boys just hugged one another. They didn’t want mom and dad. They wanted each other. It was one of those moments in life that I will always remember. It made my heart feel both broken and full at the same time. “I’m proud of you buddy,” my first born said to his little brother. It was a statement that was rewarded with a smile and a hug from the little boy he loved so much. In that moment I too was proud. Proud of both of them. Proud of their compassion, bravery and bond. Proud they were mine.
The biopsy was less traumatic for my two year old than the other tests he has been subjected to in a search for answers. Like so many scary events in life it was over quickly and not as bad as the buildup in our minds. But I did learn one unexpected thing that day. Our struggle with dystonia had influenced our family in profoundly unexpected ways. As a mom I worried that a chronic and painful disorder would make my boys withdrawn and jaded. That it would pull us apart, wear us done and divide us. But that day I learned it had done the opposite. It had fortified the bond of my boys beyond anything I could hope for. Their disorder had taught trust, love, empathy and strength. Through our struggle with dystonia, I have found a richness in family I never dreamt possible.