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hugs mama. I don't have a child with a terminal illness. When I was pregnant 20 week U/S revealed that she had an anomaly (encephalocele) right away they put us in a meeting with a geneticist that gave us the odds of our child turning out "normal" and they were very low, we were both broken hearted and full of fear. They made me another appointment at a bigger hospital for a second opinion, it was a week away. That week was the hardest week of my life, I prayed for God to take my child if she'd have no quality of life. I felt horrible asking for that but I didn't know what to do. Everyone we spoke with offered to terminate the pregnancy, even the receptionist. We refused, we couldn't. Second opinion appointment showed that the anomaly was rather small and there was a good chance that after surgery after birth she'd be fine. I think the rest of my pregnancy I was sort of detached, I did bond and I loved my baby and I knew I'd love her whatever the outcome, but I think the fear of the unknown kept me from fully bonding. After she was born I wasn't really able to hold her, just a few seconds before she went to the nicu, and within 4 hours she was in surgery. Now looking back I wonder how is it that I wasn't a total mess while she was in surgery, and the only way I can explain it is that I knew it had to happen all along, I've conditioned myself to think that that's the way it's suppose to be. Anyways I don't mean to hijack your post, and I know you situation is entirely different, but I am familiar with the love with fear that you speak of. Even though she is 3.5 years old it still creeps up on me. Hugs to you and your precious baby girl.
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