I know that you don’t remember, and you will never get a chance to meet him, but the very first friend that I made in Boston was a little boy named Jackson. You were in room 29 when you were admitted, and he was in room 30. He was younger than you, but not by much. I remember looking at him through the spaces in the blinds, and thinking that if he could get through whatever he was going through, then so could you. After I tucked you in at night, and I was sure that you were really sleeping, I would talk to Jackson. I don’t think that he could hear me, and I don’t think that his family was in the room at the time (if they were, they either didn’t hear me, or they never let me know that they did). I would ask him about his day, and tell him about yours, and then tell him goodnight. He was there right up until the day you had surgery. As a matter of fact when you getting ready to go down to the OR I told him that we were on our way, to wish us luck, and that I wold tell him all about it when we got back.
Well, I must have been completely crazy at that time because I know that I knew that you would be moved to a more centrally located room after surgery, but I wasnt thinking about it at the time. You had your surgery on 9/1, and just as I said, you were moved to this horrible room that you shared with 3 other people. Talk about no privacy, not to mention the fact that after leaving room 29 I was never lucky enough to get a private bathroom again. Anyhow, a few days later for some reason or another your daddy and I were in the waiting room talking to each other. The details are a little fuzzy now, but if I had to guess,I would say that the doctors were either doing some sort of procedure on you, or you had 2 other visitors with you at the time. So, while daddy and I were talking, I saw my friend Michella walk by in a dress. I commented to her about how nice she looked, and she told me that she had just come from a funeral. I had no idea at the time, but the funeral that she had gone to was Jackson’s. He passed the day after your surgery.
Another family that we met that was very special to daddy and I was Lola, and her mom Natalie and her dad, whose name I can’t remember for the life of me. In CHB it is commonplace for the nurses in the cardiac ICU to take the parents of a child getting ready for surgery to “see” a post-op baby. The baby that your dad and I saw was Lola. She was beautiful. I remember walking by her room when we first got to the hospital, and always smiling at the pictures that her parents had put up on her door. That was something that a lot of parents did there. I did it too. We do it so that people who walk by and peek in the door can see our children at a time when they weren’t hooked up to a million different machines. Anyhow, she had this one picture that I will never forget. It was a black and white close-up of her face, and she had great big sunglasses on and her lips were bright pink. It was such a girlie picture, and you couldn’t help but imagine her as a model when you saw it.
When we “met” Lola for the first time, she was only hours out of surgery, and now I remember asking her mom and dad how she was doing, and they said that she was doing great. After we talked for a couple of minutes, and our nurse, Jim explained what all of the tubes, medicines, and monitors were for, we left them to be alone with Lola.
Lola had her ups and downs, just like you did, and just like yours, hers never seemed to be a very big deal. There were numerous times that Natalie and I would sit in the hallway right outside of the ICU or in the waiting room together while little procedures and tests were being done on you guys, and we would reassure each other that the other one’s child “was a fighter, and would be just fine”.
Then one day, I walked by Lola’s room and I looked in to see if Natalie was in there and she wasn’t, but Lola was, and she was orange. I don’t mean tan, I mean ORANGE! My stomach dropped, I just knew that something very, very wrong had happened. When I finally did see Lola’s mom, she told me that Lola had a test done, I think it was an MRI and that she needed to have contrast dye injected into her. Usually, a person will get rid of the dye when they go to the bathroom, but for some reason or another, Lola’s body wasn’t getting rid of it, which caused her to turn orange. A few days later after you had been moved to the floor, I received a text message from Michella that Lola had passed in her mothers arms earlier that morning.
I remember walking back to the hospital from dinner with Beth and Michella, and seeing Lola’s parents loading all of their belongings into someones truck to go to a hotel. All 3 of us stopped and looked at each other. We all knew that we had to say something to them, but we had no idea what. As it turns out, there is nothing that you can say to a parent that lost a child, so we just hugged them both, and told them how sorry we were. As Natalie was getting into the car, she looked at Michella, beth and I and told us to go upstairs and hug our babies. Still to this day that amazes me. How someone can think of someone else in their darkest hour is completely beyond me. I’m not sure that I would be able to so the same. As far as I know, they left back home for Dallas a few days later.
I am telling you all of this because Christmas is only 5 days away, and I feel so incredibly grateful for all that I have been given in life. You and Connor are the most amazing gifts that have ever been given to me, I have a wonderful family, and I have made some incredible friends. I just can’t help but feel guilty. I was one of the lucky ones. I brought you home, and you are doing amazing. I can’t help but think of Lola, and Jackson’s family, and what they must be going through this Christmas. In their honor this year, I have decided to leave the angel off of our Christmas tree. It may sound silly, but I get some sort of comfort believing that Lola and Jackson are the angels in our house looking over you.