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I went to Eliana’s hospital yesterday. I have a friend there who just had a tumor removed. There is plenty I could write about that, but this is a blog about my daughter so I’m going to stick to that. My friend was telling us about when she first went in and they had to put a tube down her throat. She told us how badly it hurt. And I was sitting there trying not to break down completely, because I was thinking of my poor little baby getting those tubes shoved up her nose and down her throat every few hours for two and a half weeks straight.

Of course she cried. Of course I knew she didn’t like it. But it was almost necessary for me to pretend that maybe it didn’t really hurt that bad. Hearing my friend speak the truth was like stabbing me in my heart. Oh, God, my poor baby. After a few days of that, her little nostrils would bleed each time they did it. And even though there was no alternative, I hate myself for allowing them to do it. And I hate that it was all for nothing. And I hate-HATE-that my poor baby was in pain and I couldn’t do anything about it. If her life couldn’t be spared, I wish her pain could have been. These times are unbearable for me not only because I can’t change her death, but because I can’t change those parts of her life either. If she was only allowed two months to live, why couldn’t they have been happy?

I ran into two of her doctors while I was there yesterday. One of them said “You did everything you could.” This may or may not be true, but either way I started bawling again. It seems that one of the worst parts of being a bereaved parent is the aching, unshakable feeling that somehow there was something more that I could have done. I should have done MORE. I should have done BETTER. That somehow if I had just tried a little harder, or prayed a little more sincerely, or researched more diligently, I could have protected my child from pain and death.

Logic plays no part here. Reasoning means nothing up against a mother’s love. I was supposed to take care of my baby, and didn’t. The other doctor, after we had talked for a few minutes, said “But you miss her.” And then she hugged me and let me cry on her. It wasn’t a question. It was a statement, and the truest one in my life right now. After all the talking, and crying, and remembering, and questioning, and agonizing, after everything it always comes down to “I just want my baby.” img_2333

I don’t really have a point to this post. It seems about as pointless as my Eliana’s suffering. Because neither her hurting, nor me writing about it, changes the fact that she is gone, and there is nothing I can do, or could have done, to change that fact. I know it’s obvious, and unnecessary to even say it again, but if there is a point to this, it’s simply that I miss my baby, and it tears me up inside to think about her being in pain. Pointless pain, because it did not result in her getting well. As my pain seems pointless, because it will never be enough to bring her back. I just miss my baby.

I love Eliana’s little upturned nose. I love her perfect rosebud lips. I love her long, long feet and toes. I love her tiny little baby doll body. I love how she’d sleep through absolutely anything as long as she was nestled in my arms. I love how unbelievably soft her head was. I love her sweet baby smell. I love how she’d stare deep into my eyes and not break eye contact. I love her giant open mouthed baby smile. I love how she’d sleep with her fists next to her face. I love her startle reflex. I love how she’d move her left leg around if you tickled her belly just right. I love how her lower lip would pout out. I love her soft fussing noise. I love how content and happy she was, even when it was difficult for her to breathe. I love how she’d whap the hospital staff in the nose with her IV board if they got their faces too close. I love how she’d stare in wonder at the mobile on her crib. I love how she’d move her breathing tube into her mouth to suck on. I love that even right after surgery, while on sedatives and a paralytic, she somehow managed to move her lips to try to nurse. I love everything about her, except that she’s not here.

I hate that she is dead. I hate that I won’t get to see these things again. And I hate that there will never be anything new to add to this list. There’s a lot to love, but it will never be enough.

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.



December 2019
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Coming soon: Memorable quotes