Sarah Gray

           One big theme I learned while spending time with the kids this week was the power of touch. When I first arrived, our first job was to meet one of the children and take them to physical therapy. I had never before worked with children who had medical needs like these. The first child could not speak and could barely move on his own, but he could recognize faces and express himself through physical touch. As the child, his mother, and I waited in line for physical therapy the child kept nudging his hand into my hip. When I asked the child what he wanted, he stared at me with his dark brown eyes and held out his hand for me to hold it. When I held the child's hand he had the largest smile on his face. A child who couldn't communicate or take care of himself still knew how to let others know that he was happy and felt connected.

            Another child I met at the home was immunocompromised which made me nervous to touch or be near the child because I was afraid to get them sick. However, upon walking into the home, that immunocompromised child grabbed my hand and pulled me over to the couch while saying "I am going to sit on your lap". The small child had no cares in the world about his condition but rather wanted to feel connected to those around him. 

            One important thing I learned from this experience is how easy it is to mark someone by their disease. We are so scared to hurt these children who are already sick that we place them in sheltered boxes and call those boxes "safe". We think that by keeping the world from interacting with these children we save them, but what really happens is that we keep them from experiencing what it means to actually live. Human connection is a deep desire that is shared across humanity. People want to feel like others around them know who they are and deeply love them. These children are no different. The child with no muscular function wants their hand to be held even if they can't always hold it back. The child who is immunocompromised wants to be held even if it means not being sheltered from every germ. The child with a disorder of the spine wants a friend to create a special handshake with, not kept in a bed due to fear that walking around may hurt them. The process of healing is more than just stopping the spread of germs. Healing involves providing children and adults a motivation and PURPOSE to keep living. 

            What does it mean to be a nurse? To be a nurse means to care for the whole person. The whole person includes the medicines that you administer, the repositioning that is performed, and the nutrients that are given these children. However, caring for the whole person also includes sitting a family down to play Uno and providing a safe space for each of these children to feel like autonomous loved human beings that have potential and a reason to be alive. They deserve a loving home that will make them feel as if they can conquer anything. As a society we have failed these children. We tell them they are too sick to go to college or that they will die before they discover their potential. These thoughts strip them from hope. But not all hope is lost. I tell you that this home has painted a picture of what it looks like to hope. They give each child the love they need to make their own choices and to grow up. There is no "you shouldn't do that" or "that will be too hard for you". There is only "I will help you accomplish that" or "let's do it together". 

            The words that will stick with me the most will come from one of the younger girls who said, "sometimes, because I am sick, I feel like I don't belong and that makes me feel lonely, but you make me feel less alone". That is our job as nurses: To provide an area for clients to battle their biggest challenges, help them gather courage, and work up the confidence to believe that they can do anything and know that they will never need to do it alone. I am blown away as to what these children have been able to show me and teach me throughout the moments I spent with them.