A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Wednesday, March 26, 2014

Being an Angel Mom

Another Angel mom posted this today to her Facebook page. She, unfortunately, had to lose 2 girls to Niemann-Pick Type C. I have shared this with her permission to help raise awareness.

There are no words to adequately describe how you feel or live your life each day, but she does a good job to trying to explain.

I can't believe today at 5:20 pm will mark 7 years that my precious Bailey Grace grew her wings and flew to heaven. It still doesn't feel real. There is not a single second that I don't think about her and wonder who she would have become.... This day 7 years ago all my wishes, hopes, and dreams died with her. It is not fair that I stare at a pink urn everyday and to be reminded of a life that once was and that my precious little girl is never coming back. A reminder of my broken heart that will never ever heal. Days feel like years and years feel like centuries. Why does any mom have to feel this?? When will it feel normal again?? Why do I feel like my life is at a stand still and everyone else's has moved forward??

I still remember her first breath and the joy of becoming a mom to such a precious little life... The love that I felt when I held her and saw her little face. The fears that I could possibly fail her or mess up. Being a first time mom was scary, but I loved every second I got to learn and experience motherhood with such a perfect little person... 6 1/2 years seem to fly by so quickly... Sitting by her bedside telling her it is ok to go. I never thought I would ever have to say that to either of my girls. The final good bye, the one last kiss, followed by the final breath, watching the soul of my daughter disappear forever. I am truly blessed to be her mommy... It just was not enough time!! Until my father in heaven is ready to call me home, I will honor her life, her memory, and her love for the rest of my life. I miss you more than anyone could ever fathom Bailey Grace!! I love you and Miss B with all my heart and all my soul... I am so so sorry for the things you had to endure in this life.... I love you and B BIG much!! Bailey was all about seeing others smile. She truly loved everyone she met. Consider paying it forward today!! If someone asks the reason, tell them that a little angel named Bailey wanted to see someone smile today. Please continue to raise awareness about Niemann Pick C and the things children with this disease have to endure day in and day out. We need to continue to PERSEVERE to find a cure! Thank you to all my family and friends who have always been there to support and love me.


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