Why I fought her…
There are so many things you regret after your child passes away. Should we have done this treatment instead of that one? Should we have tried another hospital? Did I miss some symptom that would have prevented all this from happening? Did we get too tired to fight in the end? A lot of questions around her care become shadows that cast over your life forever.
You also find that people look back at relationships with rose-colored glasses or they beat themselves up over everything. I tend to beat myself up on my relationship with her. We probably experienced so many touching moments between the two of us, maybe more than I can count. But in my mind, all I remember is fighting with her.
When we were first diagnosed, I remember being in the hospital and listening to all these horrible children screaming and crying. Many of them were straight defiant with their parents and horrible to the hospital staff. A child life specialist noticed my total disgust with the situation and pulled me aside immediately. She told me that as hard as it is, we must treat Isabella as if she doesn’t have cancer; don’t give her a privileged life because she was sick. Discipline is important in these situations and if we let her get away with things now, we have a large battle ahead. Raise her as if she is going to survive because if she does, you will have to deal with the consequences of what you raised during this time period.
Stuart and I took that advice to heart. While we were definitely empathetic to her situation, especially during the hard times, we made sure to treat her as if she were just a normal child. She was going to do what we told her to do or there would be consequences. There was no disrespect or bending of the rules. This was how we would raise all of our kids and she was no different.
Why did I fight her on walking? I’m sure people thought at times that I was hard on her. I carried her as much as I could but sometimes I made her walk. Sometimes I made her pull her own luggage in New York because I was pulling all of mine, a stroller, and sometimes her brother Grant. I hate how often I made her walk. I felt like I was always walking a couple of steps in front of her. She was so slow and we were always rushed. I kept telling myself that walking is good for her. She is in a bed for so many hours during the day. Even though it was hard for her, she was building strength in her legs and it was good for her. But why didn’t I walk alongside her? Why did I make her look at the back of me?
I remember so many times walking in front of her as she cried going into preschool. I would be carrying Grant and just needed her to walk. She could walk, but I also could have picked her up and carried them both. I feel like in some sick way I was punishing her for giving me this shitty life. I don’t even know if that’s true as I write it. I just can’t figure out why I did it, even now. Everyone else would just pick her up. But I wanted her to be strong and in some way show me that she wasn’t going to let this disease beat her every day. She was 4. What was I thinking?
Why did I fight her on her clothing choices? She had this horrible sense of style that used to drive me crazy. I kept thinking, you already have a bald head – do we need to stick out even more than that by wearing mismatched knee-high socks and tennis shoes? But she wanted to and we fought every day about it. I would take her shopping and buy her things she said she would wear, only to come home and have her tell me that it’s uncomfortable and refuse to wear it. We would battle daily on clothing.
Why did I fight her on food? She would tell me what she wanted to eat, I would get it for her and then she wouldn’t eat it. Everyone else would just keep fixing her new things until they found something she would eat. People would drive 30 minutes to get her crab legs in the hospital because she might take a few bites of them. I was tired. I couldn’t play this game with her because I was over it. So in return she would refuse to eat. But now I would drive 8 hours to get her those stinking crab legs.
I have to think that both of us were looking for some kind of control in a world where we had no control. Maybe we were both punishing each other for something that neither one of us was to blame for in the end. I just wish that I hadn’t fought her on so much. In the grand scheme of things, none of it mattered. Who cares if she wanted to wear PJs to school really? It bothered no one in the world but me. I start to think if there were time periods when she and I just really didn’t even like each other, which is horrible. We were both just living in this weird hell together and taking it out on each other.
Maybe we weren’t friends. I think as a parent I have to be okay with that. That is who everyone else got to be to her. My job was to do everything I could to keep her safe and keep her alive. I think she knows that role was more important to me. When she was in pain, she wanted me because she knew I was going to do everything in my power to make the pain go away. I think that is why the dying process was so monumental between the two of us. At times I felt like it was just her and I going through her death together. We had finally come to terms with what our relationship was and there was no one we would want beside us but each other. I feel like we spoke so much to each other during those last few days without saying a word. I think we finally got each other and realized there was no love stronger than the love between a Mother and Daughter. Sometimes they just have a funny way of showing it.