Surviving is what you do to keep going when you feel completely overwhelmed because something totally out of your control has taken away your child's equal chance at life.
You have something new and frightening to deal with, and you have to begin adapting to an uncertain future. The severity or lack of severity of your child's needs does not make them any harder or easier to deal with. When you become aware that your child has a problem, is developing a problem, or is at risk for a problem, you begin to deal with this information in two ways—you cope and you react.
Coping is doing what you have to do to get by, dealing with one problem at a time. Coping always feels like you are just keeping up with what you have to do, with little energy for getting ahead of your problems. This is because you are using most of your energy to deal with your emotional reactions to your situation.
Reacting drains your energy and diminishes your feelings of control over your life. You have no sense of direction. There are so many aspects of this experience that you may not have expected, and that may frustrate and disappoint you.
"Premature babies have premature parents. We were not ready. There was so much grief. We were not allowed to feel it. It was like a death, but no one had died. Just our dreams of the perfect child we had waited 12 years to have. The first month in the NICU was a fog. We were numb. More than anything, I wanted a peek into the future to know we had survived.
I held Laura in my arms for the first time when she was two months old. The doctor didn't know I nursed her. The nurse looked the other way. That was the day that I started believing that I could take care of her. I could be her mother. I could love her.