You'd think after three years, diagnosis day would become a little foggy, some of the details would start to slip. You'd think I wouldn't remember exactly what I was wearing when I went to that appointment. There aren't many moments in life when you remember things so vividly, but I remember diagnosis day word for word, picture for picture, so clearly. It terrifies me to know I was supposed to go to that appointment alone. For me, three years is not long enough to forget.
I spend a lot of my time advocating not just for Spina Bifida, but for children with disabilities of all kinds. I don't want other mothers to be treated the way that we were on diagnosis day and I want our children to be treated as equals, as people. I hear horror stories of mothers and fathers being pressured to terminate pregnancies of "vegetable children" and I look at my beautiful little girl and I am devastated that someone as "educated" as a doctor could be so uneducated about Spina Bifida and other birth defects.Although we were never pressured to terminate, it wasn't a warm and fuzzy experience either! Parents do have a right to be informed that life may be hard, but they have a right to current and realistic information, not just the worst case scenario. I don't ever want a parent to be given so little information and shoved out the door as we were because no one wants to deal with you. I don't want women to have doctors who could care less about the outcome of her pregnancy or how her child is doing now. There is a fine line between being professional and showing that you're a human being too.
It seems a little silly, but I haven't worn the outfit I had on since the day we had the ultrasound that changed our lives forever. It hung in my closet and I'd see it every day and think "someday". But last month, I gave it to goodwill because I realized it was never going to be worn again. Hopefully that is just the beginning of making room for the positive in our lives.
