Tuesday, 19 July 2011

Fake Smiles seem to be the norm for me

I have read so much about Holoprosencephaly, Trisomy 13 and other genetic conditions but I don't understand how all the parents seem so strong. I constantly have people saying "you seem so strong", "I don't know how you do it". Truth is I'm not that strong and really its Hannah who is keeping me going. Its true you don't know the bond between a mother and child until you feel the movement inside. Hannah constantly tells me shes still here, shes still fighting. If I could stay pregnant forever just to keep her alive I would. There's no way to prepare yourself to bury your child, let alone a baby. I am already grieving. In some ways I think its grieving the loss of my other children, as well as the loss of my "perfect pregnancy". Holoprosencephaly is such a rare thing I am the only one in my group of friends who is experiencing. I have lost a lot of friends only because I believe they just don't know what to say. Its difficult to celebrate with friends who are expecting unless they are late in their pregnancy. Its also difficult for me to talk and be around friends with babies, or even hear about how their children are progressing. My best friend is understanding enough to allow me to be a part of her children's life knowing that in many ways I look at them as if they were my own. My life feels like its appointments after appointments. It shut down after them it seems. It is difficult for me to talk to people as all I do is cry. I get about half way home from appointments and usually cry, or its just waterworks when I get home. I know people notice I'm not happy bubbly Clare, but really I cant keep hiding my emotions.  

1 comment:

  1. My dad is a genetic councilor. He had a patient once with Trisomy 13. For the first year of his life, my dad got a call from his mom daily. They would spend hours talking about his future. This was in 2000. Jayden is now 10 years old, walking, and communicates. He is doing very well now but they aren't sure of the future. Just thought I'd tell you - there IS hope. And don't forget it.

    - Victoria, 14

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