Uncle Mark’s Memoir

I have said many times that in a strange way the trials and tribulations of Katie’s life were simplest for Vickie and me.  We were so immersed in the moment and so well informed about Katie’s status that we didn’t always feel the same pain, the same confusion, or even the same sadness that some of you did.  Tonight I want to share a memoir of Katie’s 13 year old uncle, Mark.  He is a caring and quiet young man, but through this memoir he exposed his feelings and impression of his neice’s life.  He was a great uncle…

The year 2008 is a year that I will never forget. It was filled with great happiness, but also the deepest sorrow that no one should have to face. It was in 2008 that I learned that bad things really do happen to good people. It was the year that my niece, Katie, was born, and it was also the year she died.

My sister, Vickie, and her husband, Alan, were expecting their first child. We didn’t know whether it would be a boy or a girl because they didn’t really want to know ahead of time. We found out on May19, 2008, when Katherine Alexa Manning was born. The whole family went to the hospital to see Katie. She was a pretty baby that everyone took turns holding. It was pretty obvious that everyone was really happy. She was my parents’ first grandchild, and my first niece.

I didn’t understand what the big deal was because she was only a baby.  It was really weird thinking of myself as an uncle considering I was only 12. I watched everyone else hold her, but I didn’t, because I had never held a baby before, and I thought I would wait until there weren’t so many people around. Little did I know that I wouldn’t be able to ever hold her.

Two days after she was born, Katie was diagnosed with HLHS, which pretty much means she was born with half a heart. The doctors told us that she needed surgery, and she would have to go to Yale New Haven Children’s Hospital. It was clear that this was a major issue for her and for the family. That day, I never knew if she was going to make it. I was really nervous that she was going to die.

The surgery she had to have was a success and Katie was able to come home after three weeks. We knew that she would have to have two more surgeries in the next couple of years, but for now she was here to stay. We had to be really careful around her because she couldn’t get a fever. If she got a fever before the next two surgeries her heart wouldn’t be able to take it. That was why we couldn’t hold her.  We could play with her and touch her, but only after we had washed our hands and used Purell.

I can remember that during summer vacation we would go to Vickie’s everyday so Mom could help her. My sister and I would come just to see Katie. Sometimes I would get sad because I wasn’t able to hold her because of her condition. There were always good times though, when we were around her. I can always remember how beautiful she looked no matter what her condition was. I can remember her smile whenever something was going really well or when we needed to get cheered up. She always knew the mood that everyone was in because if we were happy she would start to smile, and if she knew something was wrong she would just lie there quietly and wait until it was over.

Whenever we would go to a new place with her, she would get amazed. She would start to look all over the place oblivious to anything else that might be going on. One thing that I thought was very special about her was her hair. Her hair was the softest thing you would probably ever touch and it always made me feel like the world was all right.

Katie brought my family together more than anything else ever had. Whether she was safe at home or was getting out of a surgery and had to stay in the hospital, my family would always come together to see her or make sure she was ok. We also had to help Vickie and Alan because they spent so much time in the hospital when Katie was there.  My little sister and I would help them with yard work mostly.

Even though there were plenty of good times, it doesn’t mean that there weren’t bad times too. There were some times when she would have to go to the hospital because something would happen that was very serious. During the last couple of weeks of her life, she was in the hospital. There were many times when we didn’t know if she would make it through the night. My family was always really worried about her, and there would be a lot of crying from everyone around. By this time she was barely hanging on to her life.  Katie died on November 9, 2008 in my sister’s arms.

When she died the funeral home was filled with a lot of people that didn’t even know her well. Many people followed her story about her life not by actually meeting her, but by reading my brother-in-law’s blog. Alan started it the day they took Katie to Yale and continues writing it even today.

Having had Katie in our lives has affected the way I view other people too. We had a fundraiser for Yale New Haven Children’s Hospital to collect toys for the kids who were in the hospital during Christmas. It was called “Stuff a Cruiser” and was held with the help of Milford Police Department. There were two police cars and we thought that we were only going to fill each one once, but we ended up filling each three times. The bottom of the storage truck was completely filled with toys when it was over.

Even though she might not be with us anymore, the memories always will be. Each person who ever met her, has their own story that they can tell people. That year I learned a lot about life that I wasn’t expecting to learn. I learned that life doesn’t always go as we planned. It’s amazing I learned it from this little girl.