I wrote this today while at the hospital...
Snuggling Gabrielle close to my heart hearing every little breath she takes. Every other day I hear and see out our window the helicopter flying in as the landing pad is close to our unit. I feel sad and scared as I can imagine the fear for the family who has a child in that helicopter. It reminds me of that terrifying feeling where you lose control and life changes drastically in a split second and all your hopes and dreams halted. I remember the day we were told of Gabrielle's devastating diagnosis so incredibly clearly. I remember the room, where Regan and I were sitting holding on to each other tightly. I remember the Social Worker Grace, the 2 Neonatologists, the team of Metabolic doctors, the nurse, the Biochemical Doctor and some Fellows all sitting in on the meeting. I remember my sobs and my inability to speak, only noises and wails were all I could manage. Regan was my voice as I was crippled with disbelief that my daughter had such a diagnosis. I wanted to shake them all and yell at them and tell them they were all wrong. I wanted them to reasuure me that she would outlive us, but they looked at me with a solemn face and said nothing.
And here we are 6 months later.
My life is not what i ever dreamed it would be. It's much more beautiful then I ever imagined. It's much more real. Life is not perfect. I'm more human. The pain is indescribable. To have a child with a terminal disease is beyond words. I live with a pain in my heart every single day. It never goes away. I live for my cuddles with Gabrielle and my boys and my husband. I love to watch her breath. I celebrate her smiles, any and all milestones she achieves because that's wonderful. I can't bear the thought of her ever leaving our side so I choose to believe in miracles. It gives me hope. I love smelling her, touching her and I often sit and stare at her. I don't want to ever forget her long curly eyelashes, her little nose, her bumpy head, her tiny liitle ears, her gummy smile that makes me feel electric, her chubby cheeks, blond hair and perfect beautiful soft skin. I take so many movies and pictures of her so that her brothers will have lots of memories of her as a beautiful little baby. As gut wrenching and heart wrenching as it is, I woudn't want anyone to do this but us. I've said it once and I'll say it as long as I live: my life is so much more meaningful than I ever dreamed it would be. My only hope is that my baby girl doesn't suffer. Thank you Gabrielle for being you.