I was still in the hospital a year ago. I wasn’t even doing much walking yet. Hard to remember what each day looked like then, because every moment was different. I didn’t know what I should be doing, except that I was already knee-deep into mother guilt. I was supposed to be pumping every three hours, and trying to nurse every three hours, and getting sleep, and spending time getting to know my daughter. And of course, I was in a hospital room and she is in the NICU step-down unit. So it wasn’t like I could rest and spend time with her. Kind of, but not exactly. I’d spend hours with her, then realize I needed to pump so it was time to go back to the room. Then I’d sleep for a bit, then I’d need to see her. At that point, she was healthy and I was not.
The middle of her life looked much the same. Except that I was healthy and she was not. So I’d go back and forth between the waiting room or our bedroom in RMH (Ronald McDonald House) and her room in the PICU. I couldn’t hold her, but I could touch her and pump and feel like I was never doing enough.
The end of her life was so much easier. If I wasn’t holding her, someone else was. It was rare for her to have a daylight moment when she wasn’t held by someone, either stretch across a pillow on their lap or laying on a chest. At night my sister would stay up late holding her while we slept until her first medicine time, and then we’d swaddle her in her crib for the rest of the night, letting her sleep rather than picking her up during the night (movement almost always hurt her towards the end).
I have heard that parental guilt is there during other stages of a child’s life. I can imagine, but haven’t experienced it. I think it’s just one of those things that goes hand-in-hand with parenthood. And even now, I experience it in my mourning for my children: I should miss my son as much as I miss my daughter. I should have gotten prints of the pictures of Samantha. I should have them in frames, hung on the wall. I should have memory boxes from her things and a quilt made from her clothes. I should cry every time I think of her. I should be thankful I got to have them for just a little while. I should… I should… I should…
Why do I “should” all over myself? Why do any of us? (I can’t take credit for this last line, it comes from an episode of “Sex and the City.” Yes, I watch it).
Blooming Joy! 
SHOULD — when I hear that in my mind, I realize it’s my mother, or my father, or a composite of my mother-father figures, talking to me. It’s seldom what I really should do.
I think in a way, a lot of parental guilt comes from the collision of something so miraculous and filled with love and grace—a baby, whom you love more than life itself, whom you’d do anything for–and this sinful world and our own sinful natures full of selfishness and impatience. So in a way, the guilt is a good thing. Does that make sense? It’s like the guilt is a sign that we’re recognizing the gift and wanting to honor it better.
Instead of calling it Parental Guilt, I would call it Survivor’s Guilt. Either way you feel like you never did enough for your children. Do what you feel up to doing now. It will take time to heal. You did the best you could for your children while they were here with you. Now God is cradling them in his loving arms. Rest now. Be good to yourself. That is not wrong or sinful to take care of yourselves. I don’t know what else to say but Blessings from God to you.