One year ago today I sat next to her crib watching her, waiting for a sign that this was all a mistake.
One year ago today I realized that we had lost our battle; that my daughter was dying and there was nothing I could do about it.
She looked at me with those curious brown eyes of hers as they explained that the pneumonia would take over and eventually be the cause of her death. She reached for me as the tears started to roll down my face, as if she were telling me not to believe them. She was awake and active and full of life. I just couldn't understand how in the world we had gotten to that point. There are no words to explain how I felt that day. The anger. The shock. The guilt. The immense pain. There just aren't any words that can do any justice.
December 1, 2010 keeps replaying over and over in my head. I just miss her so much. I want her back. I want to spend the holidays with her. I want to see her face. I want to feel her soft little hands. I want to run my fingers through that full head of hair that I was so proud of. I want just want my baby back. I want this emptiness to go away.
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| For as long as I live you will live. For as long as I live you will be remembered. For as long as I live you will be loved. |
I'm trying. I really am.
I want to grow from this.
I've decided to volunteer at the George Mark Children's House in honor of Bella. I want to make a difference; I need to make a difference. The doctors in Oakland had suggested that we go to this house for Bella's end of life care, but we chose not to go. We wouldn't have been able to live with ourselves if something had happened on the way there. It's a beautiful home, and I think that their vision is beautiful. They offer parents the gift of time. The gift to spend those last days being just parents.
Bella's godmother came up with a great idea of giving bears to the children in the NICU, in honor of Bella, and calling them Bella Bears. We need to do something good for Bella. We haven't quite gotten very organized with the whole thing, but we're working on it. My aunt mentioned our idea to one of her coworkers and her coworker mentioned it to her prayer group, and they decided to knit blankets and beanies for the babies. They wanted to send them on behalf of Bella. I picked up the blankets today. They are beautiful and I just can't express in words how grateful and honored I am. They know of Bella's story and have been praying for us for some time now. Bella has touched so many lives and I couldn't be more proud to be her mother.
This is a hard time. The holidays. Her birthday. The anniversary. All of it is just so overwhelming, so I'm doing my best to keep busy. I hate having to work so hard to survive these days. I hate having to put so much effort just to make it through each day. I hate grief. Absolutely hate it.
You CAN make a difference.....I know the holidays are hard, but God is strong and HE will get you through!!!!
ReplyDeleteHi Aurora,
ReplyDeleteI stumbled upon your blog, and reading a few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate.
Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics.
I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at CBeyer@vpgenetics.com and visit www.sbgenetics.org. This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact.
Warmest regards and happy holidays,
Courtney