The past few days I haven't had much time to think about this "anniversary" for us. It's Lillian's birthday, but it's also our Birth Day, and a year from the day our lives changed forever. Yeah yeah, of course anyone that has a baby has a life changing experience, but what I'm talking about is the way PWS has changed our lives forever.
When Lillian was born she was very lethargic. She had a weak little cry, and sounded more like a newborn kitten "meowing" than a baby crying out for the first time. We heard it once when she was born, and then for the second time 3 or 4 days later. When she was born she was taken immediately to the special care nursery to be observed over time to see if she just needed to "wake up" from the traumatic birth experience (aka forceps delivery). After 2 days of being in the special care nursery, her pediatrician came to our room and explained to us there was nothing more they could do for her. She would have to be flown by helicopter to the children's hospital about an hour away. That was the worst day of my life. It was officially the day we knew something was very wrong. That was the day we lost our baby.
I have a hard time writing this, because I know there are people out there who have lost their child physically. They lost a child that they can never hold again, never see again, never touch again. But there's no other way to describe what we went through other than saying we lost our child. We lost the child we dreamed about. The child we talked to for 41 weeks inside my belly. We lost the dreams we had for her. I grieve the child I thought I gave birth to. The little girl we were expecting for 9 months. We wondered what she would look like, what her favorite subject in school would be, what college she would go to, who she would go to prom and homecoming with. What her children would look like. What colors would be in her wedding, and if she would let me help her plan it or elope to some exotic island with the love of her life. We lost that baby.
Having Lillian in our lives has blessed us more than we could ever imagine. I remember wondering if we would ever be happy again. If Lillian would be alive for her first birthday. I wondered if she would ever hit her milestones or know who we were. We didn't have a diagnosis. Nobody could tell us what to expect.
The day they took her from the hospital I birthed her in and separated us was the worst day of my life. After they took her from us we were numb. We must have looked like zombies when Phil wheeled me out of the nursery and back into my postpartum room. Once we got there we just closed the door and sobbed. We both just broke down and sobbed on my hospital bed. I don't know how long it lasted, but we had to wait hours before I could be dismissed from the hospital to be with Lillian in the NICU at the children's hospital. I remember numbly walking into our empty house to collect some extra clothes for our stay, not knowing how long we should pack for. Feeling like I was in the twilight zone after carrying a baby past full term in my body, and then suddenly being completely alone in our house. No baby in my belly, no baby in the carseat, no baby in the house. Just empty.
Tomorrow, one year from that date, we're having a party. We're celebrating life. And were celebrating BIG. Because this life we were given, this new life, a new baby, a baby we didn't plan on having... She makes us happy. And it's a damn good life.
She might not look 100% like us, she might not meet every milestone on time or make honor roll in high school. She might not have a wedding or elope with the love of her life one day, but she will have a good life. We will all have a good life.