A note from Mommy:
This picture is a metaphor to me. In a few short weeks, Peyton will be starting preschool. Ever since her birth she has been on the path to independence. First it was scooting, then it was standing, then walking and then running. All of these milestones (sometimes inchstones in the special needs community) lead her farther away from me. I am conflicted about that. Although I celebrate the progress she has made despite the challenges in her life, I am mourning the loss of the baby she used to be. In many ways, Travis and I didn't get to have the typical baby experience. Sometimes that was wonderful - how many new parents would love night nurses so you don't have to get up for 3 am feedings? Sometimes it was just sad - we gave the hospital most of her cute baby clothes because they didn't play well with a trach and a g tube.
Because we don't know enough about the genetic component of Nager, the reality is that we don't know the likelihood of passing it on to another child and for that reason we won't have another baby. And that is why I keep crying when I think about her going to preschool - I am mourning the loss of her babyhood but in some ways I am really mourning the baby experience that should have been and will never be for us.