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 husband. There! I said it. Let me remark my husband and I have different ideas, I guess just like any couple. I tried to discuss Amelia's issue with him on Monday and he was indifferent. I always think I am out there for my baby and I think he would be sympathetic to the cause; but he said he prefer me not to speak to him about "painful stuff like that". It really irritated me  and I am still ticked off as I can not speak to him about how much Amelia's story has bother me and stirred feelings that I thought were put away a couple of months ago. Feelings of being scared for my daughter future and not knowing how it will turn out. It makes me sad and angry at the same time that I cannot teach him to be a better father for my own kids as he cannot comfront what scares him as well. I am heart broken that I cant teach what I preach in my own home.

Please I beg you to sign the online petition  and prove him wrong. He believes that nothing can be done. I tend to differ. I believe in the movement of the masses, I believe praying is a key, news everywhere have been noted and making people aware of this injustice.  I believe we can change this negative answer for Amelia and I believe this story will have a happy ending.


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