Hello, it's Abby again. I was walking with Ellie today in the garden enjoying the cool air and warm sunshine. We stopped at the sundial in the middle of the lawn to play. Play consists of me taking Ellie out of the stroller and she stands on my lap and looks around. Then she stands next to me and plays with my hair or face. We watch the other kids playing or just watch the trees blowing in the wind. it is generally a good time.
Today we were joined by Livy. A spunky 3 year old whose brand new baby sister was admitted yesterday for a respiratory problem. The father joined us and started asking about Ellie. So I gave him the short version of her situation. As I was talking I could see the smile slipping off of his face. I ended my story by explaining that she may never be able to eat fire buffalo wings but she will be able to eat many other things. He looked at me hugged his daughter a little closer and said, “Wow, that's terrible, absolutely horrible.”
I could see that he no longer was seeing Ellie as the incredibly cute baby that she is and had started to see her as a freak. (She was wearing a T-shirt today also so every once and a while her G-tube would stick out and that didn't help the situation. ) So just about the time I was about to stand up and start yelling at this guy for being a insensitive ass, I realized that the horror on his face was not really directed at Ellie.
The look of horror he had on his face was because he was feeling fear for his own child that was upstairs in the NICU. I think I got to watch as this guy realized how bad things could get for his new baby. I reassured him that babies are tough and can heal very quickly from pretty much anything. He just nodded hugged Livy to him. I felt like giving him a big hug but, I think that he was dealing with all that he could at that moment, so instead Ellie and I practiced waving goodbye and continued on our walk.
I was warned by another mother that going in to the real world would be difficult because people are not as polite as you would hope they would be. I had a mother tell me that another mother in the grocery story and asked, “Didn't you get any prenatal care?” Statements like that don't happen at Children's Hospital because here all the children are sick. But, when you leave all the sudden sick kids are not the norm and you stick out. One mother referred to it as “hospital society and real world society.”
People reactions are really based on their fears and they also want to feel like we did something that made our babies end up different. So that they don't have to admit how random and just shit luck this whole thing really is. I know that I wasn't in the real world in the garden today, but I feel like I got my little sample of it. It made me realize how tough Ellie and I are going to have to become.
On a happier note, Ellie is a standing fool. I think she is going to skip crawling, and sitting and just start walking. If you try to sit her up she stiffens like a board so that you either have to stand her up or lay her down. Laying her down results in a big lower lip and then a scream and standing her up gets you a big smile and squeal. She has also taken to standing at the edge of her crib looking out into the hallway and yelling and smiling at everyone that walks by. I can't believe this this is the same baby that was barely filling out a premie diaper 5 months ago.