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We're Going to List You

On January 2nd Dr. Raz walked in my room but stayed near the door. My mother and I looked up at him.

“We’re going to list you, mmkay?” he said very nonchalantly.

“Really?” my mom asked, she sounded like she didn’t believe him. I started smiling; I could feel the butterflies rise up in my stomach. I felt like I wanted to laugh, I was so happy.

Dr. Raz had already taken a step back toward the exit, he took a step forward again and said, “mmhmm, but we have lots of work to do still, we need to get up and moving.” Dr. Raz was a man of few words until words were really needed, then he had some pretty wise words to say. He was mostly down to business and then moved on, but if you had questions he would stand there for as long as it took to answer them and talk with you.

He started to turn to go again, thinking back I don’t think he wanted to interrupt the moment my mother and I were about to share together. I reached out towards him before he could leave, he stepped forward. He looked at my hand and reached out and grasped it. I couldn’t talk at the time, but I wanted him to know this was his moment too. I wanted him to share it with us for a minute. He had taken care of me, he had helped save my life, had helped me get well enough to be listed for transplant. He, my family, and I had the same goal - get me new lungs so I could live. Maybe my fight was the strongest; maybe my will to survive was strong enough to keep me going. Maybe the doctors were so knowledgeable they kept me alive. Maybe the nurses were so passionate they kept me alive. Maybe my families love was so strong they kept me alive. Either way, the combination was enough to get us all to our goal of being listed for new lungs.

As I held on to Dr. Raz’s hand I felt his energy shift, I felt something in him relax for a second. I squeezed his hand and he looked up into my face, I tried my hardest to relay thank-you in my eyes. I hope he understood. I hope he realized how thankful I was in that moment to have him as my doctor. I had been on life support for a couple of weeks, I had been medically paralyzed and sedated and had just recently been woken up. Dr. Raz had been the doctor to do my ECMO surgery and had been in charge of my ECMO since. With a trach in place I couldn’t speak, I was I learning how to communicate all over again. I’ve always had a pretty expressive face, so I think my facial expressions helped me communicate with people while I couldn’t talk. I will be honest though, I feel the best way to communicate with anyone is with a smile. It says hello and you’re happy to see the other person. I tried to always keep a smile on my face while I was waiting for lungs. I always believed I was going to get them, so I stayed positive about it.

Dr. Raz smiled back at me, squeezed my hand, looked at my mom, and left the room. I turned towards my mom, the smile still on my face. She had a smile on hers too, but her eyes were filled with tears. I think I may have had tears in my eyes at that time too. It was common for her, not so much for me. She sat with her arms on the edge of my bed holding my hand as we so often had over the last few weeks. This would be one of the first times I remembered it fully, but almost every time I woke up she was sitting there holding my hand. I allowed my thoughts to wander, while my mother and I sat there in silence. Both lost in our own thoughts.

“I just need to get new lungs,” I repeated in my head over and over again. My mind was racing with all the things I wanted to say, all the questions I couldn’t ask. Having a trach really curbs your enthusiasm, I mean your voice. Instead of talking - like I so often would - I just let all the thoughts thunder through my mind. All I wanted was to be the mother to Jobe I used to be. “Jobe! Jobe! Jobe!” I chanted in my head. I always kept him at the forefront of my mind, my constant motivator. I let the tears fill my eyes but tried not to let them spill over. I would have to let go of my mom’s hand to wipe them away and I never wanted to let go of her hand. She was my rock, just as I wanted to be for Jobe. Two of the biggest reasons I fought, she held me up so I could hopefully get home to him. To hopefully be the mother to him that she had always been to me.

#lungtransplant #cysticfibrosis #transplant #surgery #hospital #lungsforwhit #nevergiveup

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