How do you live with it?

Well its been a few days since we found out about our daughter having Alobar Holoprosencephaly, who we have decided to name Tianna Daniella. My husband is so doting he knows this is hard for him but especially hard for me. He has not really tried to feel our previous babies move this early before but he sure tries with this one. I really think she knows he is there as she kicks like mad when he starts talking by me. However she does not kick as much when he holds my belly.
I have so many questions about this condition and have been researching it seems like its hard to know which children will live for what amount of time. There does not seem to be any rhyme or reason to it. I have had more moments of peace then freaking out as the days wear on but I also have times of deep sadness. I think I will have some panic moments as I get closer to birth but hope the peace that can be there is what helps me through. I have pondered things I might want for our birth but I have not come to terms with anything specifically as I have to many unanswered questions. I have decided to try to get a fetal MRI I need more input.
We have discussed burial ideas but this also is so difficult to come to terms with I dont want to be planing a funeral now. However I really dont think I can do it after Tianna is born if she lives but a short while. I feel the need to be prepared for more then one outcome to help limit the fall out if the outcome is poor. It does seem to be morbid to have to be considering my own burial thoughts at my young age. We feel we would like to be buried where Tianna is so we now have the need to buy plots for us.
I have been trying to have hope this is very difficult when so much is unknown. My husband and I have gained some more hope as we joined a facebook group for kids with our condition, HPEandfamiliesforhope there are many kids with insurmountable odds that have lived for many months or years. However there are many that live but a short time as well.