I wanted to share this link with family and friends. It’s a resource for family and friends affected by anencephaly. I know that a lot of times no one knows what to say or do and David and I don’t have the strength to help others while we go through this ourselves. So maybe this will be of some help to our family and friends as we all go through this.
I don’t think anything makes me happier than bragging on and talking about Brielle. I love her so much. My friend Emily, shared this link with me today and I think it rings true for me. I haven’t lost Brielle yet, but I do think of the days that will come when my little girl will be forgotten by others. That pain is deep and it terrorizes me. All I want for my baby is to be remembered, loved, I want her story to be shared. I don’t want her to be forgotten. I may break down and cry when I speak about her, or laugh as I remember how she would do things, I wont always know how I’ll react when people ask about her, but I want to be asked. I don’t want anyone to walk away and mumble an, “I’m sorry.” I’m sorry she’s gone, but I’m not sorry that I am her Mommy. I’ll never be sorry for the time I’ve had with her. I don’t want anyone else to be sorry either.
I have good days and bad days. Today is a bad day. I want to sleep and forget this is all happening, but then I start to panic. I only have so much time with her and I’m terrified of wasting it. And then I think about Christmas and how she’ll just have died. And how can I ever travel again? I can’t leave her alone in a cemetery on Christmas. I know it’s just her earthly body, but it’s all I’ll have left, I have to keep her safe.
And how do I deliver her? Her odds of survival double if I have a c section, but I’ve been told never to have abdominal surgery again. It puts me at risk of death and worsening my gastroparesis. How do I chose between our lives? One mother talked about her son having sores on his exposed head after birth, where skin and brain tissue were rubbed off. How can I let that happen to her? Even though I was told she’d never know pain, she’s been showing signs of pain and sensitivity. How can I do that to her? How do I make that decision? I just want my baby to live. I just want to see her grow up, I’m supposed to go first, not her.
lovingbrielle.com 