9/5/16
These are the first notes I thought to write down a couple weeks after the diagnosis.
My body is tingling and my chest is heavy. Every song I hear on the radio has new significance, from the Hamilton soundtrack song "Push Away the Unimaginable" to John Mayer "Gravity, is working against me". Talia's body is so weak she is literally working against gravity, and she gradually losing the fight.
My natural inclination is to not make Talia laugh or teach her anything because it reminds me of the fact that she is a person, not a newborn. That this period of holding and cooing is not a temporary milestone on the way to further development
I have to remind myself that watching my children interact with Talia is a blessing and is building a part of their souls, and not building a burden that they will have to over come.I can't confront my emotions until after my other children are in bed, and I'm exhausted by that point anyway. David and I stare at each other across the dinner table and slog our way through until the house is quiet with sleeping children and then we can barely muster the energy to discuss the multiple terrible thoughts that had crossed our minds earlier that day.
Nathan said pre knowledge of diagnosis "I remember when Talia was born. I don't remember visiting Audrey, but I remember Talia" I hope that memory is always seen in a positive light and not through the pain to come.