hi sadkim, so sorry for you. I know it's very hard as I too lost my son to a terrible condition. James ( many here know about him) died last year in Sept, it will soon be his 1st birthday. Although I can never see him again, I often have this pic in my head ( called me silly that he's learning how to walk now ) he lives in my heart.
We decided to do the Great scottish walk, in memory of James, I want to remember him in a positive way, you can read about james on www.justgiving.com/jim_jim
What i want to say is, for me, personally, I know the pain will never go away, my love for James is unconditional, he stays in my heart, everyday I remember him, but I wake up everyday thinking James has made us the people we are today, he's one wee angle, he taught Mummy and Daddy a lesson. When i was weak, i think of James, then I will become stronger but then yes, I do cry sometimes, every now and then when I think of his life, his condition and how much he had to put up with as a baby, I will become tearful.
We used Robin House twice and James left us at Robin House, there I became good friend with a mum whose son has a similar condition as your baby girl, he has got a genetic condition called Krabbe disease, hes now 21 months. He was born healthy, it was until hes about 6 months old, he became ill, and he slowly lost all mobility, he lost the ability to suck and spent a lot of time sleeping...with his condition, average life expectancy is 2 year old, his mum is one very brave lady, both her and her hushand are wonderful parents.
I think there is nothing anyone can say to make you feel better, you have to learn to carry the pain, talking to people in similar situation helps. I talk about James very often, I love him and I would tell people that I want to talk about James. Anyway, your baby girl stays in your heart, she has gone but her soul stays....take good care of yourself and be proud of yourself and your baby girl.