
Big Marcus passed away yesterday around 9:00am. He is the man we named our first born son after. I knew as soon as I met him that we if we ever had a son we would name him Marcus and we did. Little did we know that Big Marcus would live for another 20 years and get to see Marcus grow into a young man.
I was only 17 years old when I met him. He was one of Bryan's best friends and he had just recently been diagnosed with Hunington's Disease. At 6ft 7in. tall he was most impressive when he entered a room or attempted to exit a car, especially Bryan's little red Nissan Sentra. His legs were so long I'm still not sure how he fit in that car but he did. I can still remember him coming to Bryan's parent's house and having to duck under the archway that led to their front door. I went to shake his hand and he embraced me. My head was at his belly button, I kid you not. He wasn't loud or obnoxious but he did have a bit of a mischievious look in his eyes. He was always smiling and making jokes.
As soon as Bryan and I were engaged we knew we wanted him in our wedding. In a strange twist of fate we realized that Stephanie had a family connection to Marcus and I knew they would walk together at our wedding and they did. The subtle signs of the disease were there then but you had to really know him to notice.
Four years after our wedding we had our first child and surprise, it was a boy! A boy hadn't been born in Bryan's family since Bryan, almost 30 years. We knew his name immediately and we couldn't wait to tell Big Marcus! As soon as possible we went to Lodi to show big Marcus little Marcus. He held him in his huge arms and the cameras went crazy. Such a special momment. The signs kept coming, no more playing basketball, no more driving a car, no more riding a bike and yet he continued to surpass his doctor's expectations on what he could do. He could swim, he could work out, he could help in classrooms with younger kids, he could mentor other young men, he could give back.
Our Marcus continued to grow and Big Marcus continued to be a part of his life. As our family grew so did our schedule and we saw him less and less, however he did get to go to Maui with us when Marcus was only 2. What a special time for the two of them. We have tons of pictures of that time and a very special video to mark that occasion.
And then the time came for him to be placed in a care facility. His couragous mother could no longer care for him because he was so tall and yet so week. He had almost lost all balance. It was his suggestion.
And there he stayed for several years, slowly losing all control of his body but not his mind. His mind was all there. With an incredible support system he continued to do well all the while losing what you and I take for granted. The ability to stand, eat, talk, blink, hug, the list goes on.
We got the call last week from his mother that he was longer receiving food. His digestive system wasn't working anymore and it causing severe discomfort for him. Marcus wanted to see him one more time and he wanted pictures to mark the moment. I had just received my new camera and I am so thankful for that gift.
When we arrived, I knew immediately that I couldn't take pictures of them together, it would be disrepectful to him and his family. Luckily, his personal belongings surrounded him and I found several things with his name on them. Marcus found a scripture for Marcus and wrote him a goodbye note, placing it in his Bible for them to find.
I'm proud of the man Marcus is becoming and it showed that night as he said goodbye to a man he looked up to and honored. A man who never complained about what he was dealt but instead chose to face the challenges ahead with dignity and determination. We are honored to have known him and he will never be forgotten.