Sitting here thinking back to my high school reunion last weekend, going out with my sister-in-law, niece and Becca to the mall the other night and talking to a friend this afternoon, I realized I have lost a part of myself over the years. I am sure, Brian has as well...Becca has probably had a hard time figuring out who she is...at a really hard time in a pre-teens life. I would think given our situation this is "normal".
Leaving the house is getting harder for Ian, we don't go out much as a family or at all. One of us is always home with Ian. We are going to start working on him using his in-line humidifier more often to see if we can get him out a little more. Getting out will do all of us some good. When you are in the house most of the time and you do get out, you feel strange. I remember when the twins were first born and I came home, Brian and I had to go to Target, I felt as if everyone was staring at me. It was as if people knew I was on bed rest and just got out, as well as that my babies were in the NICU. Just like riding a bike, you remember how to do it. As my outings went on, it did get a little easier to be out.
When talking with others, you want to talk about other things and you try, very hard, but then you realize, it has become your life, it has become you. As much as you try to be more, to be about other things, you aren't. It has become you, it starts to define you....you are the caregiver of a terminally ill child and your life has become that. It was hard once I realized this because over the years I have tried not to become this, to not lose myself. I have also realized this was out of my control, no matter what we would have done, it would not have made a difference. This has become our life. I know this will change, however, I don't like what needs to happen in order for the change to occur....in time will I become something else and how will that feel.
For now, we will continue with our lives as they are, taking care of each other in whatever manner we need to.