This is something I do talk alot about with moms who beat the odds.
I was talking to a mom who has the full set. She needed someone to listen and basically know that her thoughts are normal. But something stuck me as odd. She was trying to walk on eggshells. She tried not to upset me because my sons didn't survive.
This amazed me. When you finally have a end to a TTTS pregnancy, you have this moment that the dust settles and you'll see what your life will hold. When you have survivors, that time is filled on anxiousness (If that is a real word). You second guess all of your decisions. Wondering, will your children have a disability? Will their quality of life be sub-par to what your community sees? And then it hit me. She and her husband questioned their very lives together.
This is not something that the doctors really tell you during your pregnancy. I say this because you have only weeks, days, or even hours to make gut wrenching decisions. And sometimes the life long impact a parent might not see.
Her marriage is on the rocks now. She said her girls needed so much help, and that she couldn't just get a sitter that she stopped being a wife. The doctors don't tell you that . Now she has a perfectly normal 4 year old, and the other will be lucky if she could feed herself.
She will have to find a way to explain to one child that, she didn't cause her sister needing so much help. She is already taking on the futures weight of uncertainty now compounding all of her emotions. I know that not having them is hard. But, hearing her I at least have a final end. I just need to deal with my grief. She and all of the other mothers who have 2, will never get that. They deal w/ TTTS the rest of their lives in a totally different way.
This is something I never imagined. They have to pick up and move on and guess what curves TTTS might still throw at them.
I feel for them the same way they feel for me. They have to keep their face straight, and not wonder, for if their children see them second guessing their decisions. Their children could be effected by that.