This handsome young lad is my little brother, Christopher. His family and close friends, referred to him as “DeathProof”.
He was diagnosed at the age of 5, with an incurable genetic disease, Duchenne Muscular Dystrophy and had the life expectancy of 12 years old. When he turned 12, the doctors said he wouldn’t make it past 18. When he turned 18, they said it was NO way he’d live past 21. My baby celebrated his 26th birthday March 28, 2014. Happy; healthy and enjoying the birthday gift I had gotten him. Sadly, a week later was admitted into the hospital.
For a little over a month, my mother and I watched Chris fight for his life. Things were up, and down but we stayed by his side every step of the way. I left the hospital one night jst to escape the sounds of the beeping machines which I am terrified of. The next morning as I was about to head out, back to the hospital, I received an urgent call from my pops telling me to come to ICU. I ran out of the house, down the block to my car, and sped all the way to University Hospital. Ran across the street, didn’t even look to see if cars were coming. Got up to ICU were his favorite nurse pointed me to his room, FILLED with doctors and nurses. “Where’s my brother?!” I shouted as nurses tried to me sit me down. My pop told me that my brother’s heart had stopped. “My brother died?!!!!” Nooooo, nooooo! My pop said, they got him back and had to put the trach back in his throat. When I was finally able to go in, his face was all swollen. I could feel my heart pounding through my chest. The first thing I did was grab his hand, as he had always wanted me to do. It was cold, and the tears began to stream from my eyes and then his. He was jst lying there, still. He then began to grab my hand, I figured he would be ok. A week had gone by and he still was unresponsive, he no longer grabbed my hand. His eyes would open, but he wouldn’t be starring at anything. It broke my heart to see him this way, seeing as though the quality of life he had lived before this was entirely different. A brain scan showed that he was in fact, brain dead. When my mother finally made the decision to turn off the machines, in my heart I knew it was the right thing to do.
The day of, after they cut off the machines, he breathed on his our for 7 hours strong. My mother laid with him on his bed, I on the chair, and we fell asleep. It was the best nap I had ever taken. Reminded me of when we were kids, so nostalgic. When I woke up, scared something was going wrong, his pulse was still strong, dropping very slowly but strong. I leaned over to him, “Chrissy I’m going to take a shower, I’ll be right back. Don’t go anywhere ok” Even though he couldn’t respond, I know he could hear me. My shortie and I were talking to the doctor in the hall, I’d say for about 7-10mins, after that we’d made our way to the street. My phone rang. It was my pop saying “I think you need to come back up” I’m like is everything ok, what’s going on. “Just come spend a little more time” he said. I looked at my boyfriend, he looked at me. “Go” he said. I took off running. Felt like I was back on the track in my heyday.
I ran back to his room only to find that he had flatlined. “Nooooo; Chris, noooooo” I dropped to my knees at his bedside. “I told you to waiiiiiiit. I’m sorrrryyyyy; I’m sorrrryyyy” I’m full on ugly cry at this point. I couldn’t believe this was happening. “Kiona, but he IS waiting” my mother said. I looked up and his pulse had come back, very faint, but it was back. He came back so that I could say goodbye. My boy! I climbed in bed next to him and let him know how much I loved him and would miss him and how proud I was of him for fighting this long. He was my hero. And I asked if he would come visit me in my dreams. It was a gloomy dark day outside but oddly enough, the sun was beaming in his room. It was soooo bright and hot. When it left his room, so did his pulse. He was gone. In my heart, I know that it was my little sister coming to bring him home to the Kingdom.
Though I know he is resting, peacefully in the arms of our Father, it still doesn’t fill the void his departure has left. My brother was everything to me, everything. I had protected him for so many years from bullies and assholes, incompetent nurses, burnt couldn’t save him from this. I couldn’t fight death. I hope one day, I’ll be able to see that sweet face and kiss those cheeks, but until then I’ve dedicated my life to helping find a cure and speaking with families who’ve recently been diagnosed. I know he’s be so proud. And that’s all I want, all I’ve ever wanted. I love you Jelly and I miss entirely too much!!!!!
In light of blackout, I’d like to recognize the beauty of this beautiful soul. My brother, my best friend, my guardian angel.