I always knew when something was going to go wrong. Call it intuition. Call it a super-strong bond between mother and child. Call it a message from God. Call it whatever you want. But I was right every time. Strangely enough, it usually started out with an extreme anger or dislike towards whatever nurse was coming on for that shift. Talk about a really weird displaced emotional response. After a couple days of this I got so I could at least recognize it and quit scowling at the staff, since it had nothing to do with them anyway.

I was used to getting up a couple times a night-before the surgery to nurse and after the surgery to pump milk. My usual pattern after the surgery was to go over to Eliana, tell her I was there, stroke her head, and talk to her for a couple minutes. Then I’d use the restroom, and come back and talk to her some more. I held her hand and told her what a great job she was doing. I’d say I was right there with her, and how much I loved her. I told her that she needed to keep getting better so Mommy could hold her, so she could nurse again (her favorite), and so we could go home soon. I’d tell her that I had to go back to sleep, but I would be right there with her, that I was not going to go anywhere.

One night I woke up around 3am, with the feeling that something was wrong. That time when I went to her there was movement instead of stillness. That was the night she had seizures. There were about a million other things that I was worried about going wrong, but this was one I had tried to avoid thinking about. I was in agony over the possibility that she would end up brain damaged. I could accept that her body might not be totally functional, but it broke my heart to think that all this would leave her brain less than whole. And in the back of my mind, I was so scared that some day she’d end up hating me for my decisions if her life was one full of pain and frustration.

I was terrified, but I held her hand through it all. Tears were running down my face onto her bed, and my body was shaking with my sobs, but I managed to watch the clock and time them until the nurse came back. The longest one lasted over three minutes. I’m not really sure how long that is compared to an average seizure, but it was a lifetime for me.

I never told anyone about that night, not a word. I don’t know if I was trying to protect her, or me, or them. I just knew that I was not going to tell anybody about what had happened. I think I was afraid that people would start wondering if it would be better for her to not make it. I don’t know if I could have forgiven one of my friends or family had they had suggested such a thing to me. They had no right to even think it. I would have hated them for it, so I avoided finding out if they felt that way or not.

I had of course wondered that same thing myself. The thought, however, was completely overridden by my need for her to live, no matter what the cost. I didn’t care how long I had to stay in that hospital with her, or whether I had to give her food through a tube for years, or take her to therapy every day for the rest of our lives. I was willing to do it to keep my baby here with me.

I didn’t want anyone to feel sorry for me, or for her. If I had to work a hundred times harder to care for her than for a regular kid, I would have done so with pride and joy. She was worth it, regardless of whether she was “whole”, and I was willing to do whatever it took. I would have gone through anything, sacrificed anything, for her. Perhaps even her own comfort.

Selfish? Yes. Love sometimes is. But the convenient thing about being selfish in this situation is that the outcome is usually out of your control anyway. I didn’t have to make the decision to keep her here no matter what the cost, because her little body gave up before my will did.

So now I am left here to wrestle with the baggage. I drag along the guilt over having wondered if it would be better for her to die, guilt over wanting to keep her here with me even if it wouldn’t have been best for her, guilt over all the should haves and what ifs. And I’m left with these awful, aching, empty arms, and a heart that screams continually for something it can never have.

Now that it’s too late for any of it to matter, I can allow myself to share some of the things I went through with her. I can let out the terrors of those long, dark nights alone at her bedside. I can admit to just how bad the situation was, without having to put on a brave face. I can share all the ups and downs we went through without having to worry about people’s condemnation or pity. Because none of it matters now. She’s gone.

Sometimes I think Eliana was the lucky one. She got to escape the pain. I face a lifetime of it, because I have to live it without her. But if my memories, and pain, and tears are all I have of her, I’ll gladly take them. Because she’s still worth it.