So many decisions had to made about Lillian's care. Prior to her trach surgery, I asked the team if that was the only option. I don't think I'll forget his response, he said, " well, yes, the other option is to do nothing...as in let her go". Some of those days haunt me. As I think about the amount she has suffered physically and what she's been subjected to, I use to beat myself up wondering if I had selfishly chosen a life of struggle for her. We were told she would die by age one or two. That first year, I was in total survival mode, Matt was working long, long hours, I was up around the clock taking care of her, and I really don't know how I managed to get my then small children fed and out the door to school. I don't remember a lot about that first year. It makes me sad. Madeline was only four and I remember so little. I literally did not get any sleep. Her first return visit to the hospital she was in severe respiratory distress, I was scared. That happened two months before her first birthday.
When they told us she would be mentally retarded and die, all I kept thinking about was, what have we done to our kids? what will we tell the kids? how can we prepare our kids?
Oddly, it seems like it gets harder for me each time she gets sick. It's difficult, when in the back of my mind I wonder if this sickness will be "it". How much can a tiny body take and still keep going?
This little girl, though? She gets weak, she gets very weak, but she bounces back. It takes her a while, but she does.
I wonder when I hear about people who lose their babies, their normal, healthy babies, why?? Why has our daughter been spared and theirs have not and I have guilt. Which is CUH-RAY-ZAY.
I mourn deeply for people who lose their children, their special babies. Their sick babies.
People, in their need to comfort you, tell you, "none of us is guaranteed tomorrow". Let me just set you straight from my perspecive...that DON"T help. period.
I love all my children the same, but I have fought like nothing I can describe for my Lillian. Because that's why what you do when they tell you she will die. You fight, you love, you cry, repeat repeat repeat. infinity. That's me anyway.