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Showing posts from January, 2012

Sad, mad and other mixed feelings

I know this is a blog about my child, but I really need to vent my feelings somewhere. I have been heart broken since I last read on Thursday about Amelia, a girl with special needs that is being denied a lung transplant due to her condition, you can read her mother's painful story here. As a mother of a child with special needs, I am angry just to think that mother could be me someday; as Nurse who cares for chronic patients, I am jealous that some patients who are still in self destructive mode can be treated; yet a little girl is being denied her right to live.

I always try to be an advocate for my daughter and many of the wonderful mothers that I met through BabyCenter and the Down Syndrome Community push me to be better everyday; but sometimes I try to have my own family involved on the process and it just make me feel so alone that my own husband does not want to hear about it; I am a wife who is feeling all these awful negative feelings and can not express them to her own h…

Good times, yet still scared

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On Monday, I got home at 530pm from a BBQ get together with friends that I am blessed to work with. For some of them, it was the first time they meet Alyssa. I have taken her to work once when she was 3 months old, she was still hooked to the apnea monitor and we went close to my job for our early intervention appointment. Well they loved her!!Alyssa was a bit shy at the beginning, but she loves kids and she felt right at home with them. It took a little to warm her up to the adult crowd, but after half an hour she was all smiles and flirting around.
It makes me so happy find out she is just charming with others than our family members. She was playing with the kids in the trampoline and loved being held by my friends until she felt sleep on my buddy's arms. I loved to see the acceptance within my friends. It reassures me that she has her own personality and she will be accepted by others than her peers.
It stills scares me to think about her future. Last week I read about a blog…