March 25, 2015 we were told that our sweet newborn baby who was only 5 days old had a terminal diagnosis. The world stopped, the tears were uncountable, you could hear our hearts breaking. How long did we have with her, how would we tell her sister, what will our lives be like, will she ever leave the hospital, how can we do this, and will we make the right decisions. These are all the things plus a million more that went through our minds as the Drs. enter the room with so much unknown information. Emma is pretty rare (1 in 100,000) there are not many Drs. that know about her diagnosis. Reading the info given to us from 1995 (she was born in 2015) was so limited and heartbreaking at the same time. What was Emma's life going to be like, will she even have one. We were told to take her home and love her because she might not be with us very long.
When I look back on diagnosis day I think about how uneducated every one in that room was. We all thought (including Drs) that Emma would just be a vegetable from the information that was given to us. What we didn't think about was all the unknowns, no one knows everything and definitely no one can write someone else's story. Only Emma can write her own story.
I know that nothing can take away the pain from your child receiving a terminal diagnosis like lissencephaly. But these quotes help me everyday to refocus when I am down. I wanted to share them in hopes I can help someone else who is struggling with the heartbreak of your child receiving a devastating diagnosis. Please help us to reach others by sharing this blog post, sharing Emma's facebook page and/or instagram page.
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Staying positive and strong after such a heartbreaking diagnosis, like lissencephaly is very hard. Here are some inspirational quotes and stories that have helped me to see our life in a different light. We are blessed that we were given Emma and we will never see it as sadness or a pity party. Yes, we are sad she has to go through what she does but we will never be sad she was given to us.
