Hello, I hope I'm OK for posting here, as I have not yet experienced my loss. From reading, I learned I have "anticipatory grief"-grief when grappling with the news of a terminal illness. My 23 year old daughter had always had difficulty with her milestones and later on, in school. She began to have neurological problems in her late teens and early 20's. To make a long story shorter, she was born with brain damage brought on by lack of oxygen at birth. The doctor explained that one side of her brain, her cerebellum, and her medulla oblongata had all been damaged. The other side of her brain compensated during her youth, but it's finally giving up and breaking down. Her autonomic nervous system will break down, and she will die. A rough guesstimate is two years (but this was from diagnosis about a year ago), or much less. He gave us markers to look for that would "signal" a worsening and nearing the end: seizure-like jerks that aren't epilepsy but look like it (check); large weight loss despite eating as much as she wants (check-40 pounds in about five months); skin problems, speech problems...and so on. She is failing. The truly bizarre thing is that she is planning her wedding (with copious amounts of help from her dad and I), for April. We're privately hoping she's still here in April, and if so, competent enough to marry. We are doing this because it seems like a last "gift", a big party with her family and friends here. It gives her something to look forward to when there seems very little. The neurologist says she could stroke out "tomorrow", and the end will not be pretty, like Dark Victory. As for myself, I feel like I'm in Bizarro-world. I work at a grocery store, and to be honest, I work there to keep myself busy-"occupational therapy" if you will. But there's no real peace or happiness in me. I don't know how to "do" this. I hope I'm still welcome here. Thank you for listening.
One of my favorite sayings is “tomorrow is never promised”. I would speed up the wedding like tomorrow. My 34 yr.son died unexpected, so thankful we lived ours lives like this, no regrets. Please don’t wait, best of luck.
What a heavy burden you are under. This must be so difficult. There is no way to "do" this. Just take one day at a time and try to hold on to the stability that only God can give. You certainly are still welcome here. We welcome anyone who is hurting and who is struggling with the pain that this involves. Sometimes it helps just to share which helps a person try to think through all the craziness that they are faced with. We are here to support you. Chris
