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The morning of the surgery I stood in the hallway holding Eliana, bouncing her, rocking her, trying to give her a binky. She was so upset because she hadn’t been able to nurse since 1AM. (No food or drink before surgery) She was crying and I was crying and there was no comfort for either one of us. When it was time I had to put her down in the crib. The doctor said “Everything will be fine.” and I wanted to scream at them all that it wouldn’t be. I wanted to yank her back from them, to not let them touch her. But I didn’t. I let them wheel her away. The last faces she saw were strangers’, and the last hands she felt were doing things I’m probably better off not knowing about. I let her go. I let them take her and she had to just lie there crying, with no one to even hold her hand. My baby’s last conscious memory as they were putting her under was crying in a room on a table all alone without her mommy. Mommy didn’t come.

I’m moving. Soon and far. The wanderlust side of myself is reveling in the change and the new adventure of it all. The sentimental side, however, is crying rivers of tears inside my head and heart. All three of our children were born in this house. That fact alone could have kept me content here for the rest of my life. There is a certain old-time appeal to the idea of birthing and raising our children here, and growing old and dying here. It is not going to happen that way now.

Since Eliana only lived two months, there are very few physical ties to this world. One is our house. The other is the hospital. She was born and lived one month at our house. She lived one month and died at the hospital. Now I am leaving both behind. I’m also leaving my friend’s mom’s house, where Eliana made one of just two social outings. My other friend’s apartment is here, the place of her second social event. The doctor’s office I took her to is here. The urgent care we went to is here. The funeral home, the last place I ever held her, is here. Every place she ever was, is here, and I’m leaving.

I won’t be able to drive down the street, and pass any of these locations anymore. I won’t be able to go visit the nurses at her hospital and chat for a few minutes with someone who actually knew her. I won’t be able to sit in my recliner, or lay down in bed, and close my eyes and relive the moments when she was right there in that exact spot with me. I suppose to someone who has never lost a child that might seem like a good thing. To anyone who has, though, we know that part of getting through this depends on clinging to whatever memories we have of our children, because that is all we will ever have of them. There will never be any new ones.

I’m also leaving the only people who are witnesses that my child existed. People here saw her. They held her. They came to the house, to the hospital, and to the funeral. To them, she is more than just a picture on a wall. She is a person. I’m moving away from all the people who care about my baby, or about me. I’m leaving the only people who know me and love me enough to support me in all the things I do in Eliana’s memory, the things I need to do to survive this life without her.

Her birthday is going to be the last day I see most of the people I know. How could the day be any sadder? Two months after that I will be in a new place nearly alone on the one year anniversary of her death. The only thing I can think of that is worse than dealing with my child’s death, is trying to deal with it alone. I’m scared of how hard it is going to be.

I will still have her urn, and her pictures, and stuffed animals, and everything else that was hers, and that I’ve collected since she died. It just isn’t the same, though. It feels as though her essence or spirit is here, and I’m leaving. It is somewhat ridiculous, as I do not believe that at all, but that is how it feels. I’m aware that feelings sometimes have little to do with reality, but  knowing that does not stop how much it hurts to be leaving this place-leaving it without her.

img_2272_edited-11I’m moving, but a part of me, a part of my heart, will always remain here, in the bedroom of this house where my sweet baby took her first breath, and in that hospital room where she took her last. I may have to move, but I will never move on.

I should be asleep right now. We are supposed to be getting pictures taken in the morning. But as I was putting Elisabeth to bed, she started sobbing, choking out that she misses Eliana. This happens, not frequently, but enough that (sadly) I am used to it. Used to it or not, it breaks my heart all over again each time it happens.

She talked more tonight than usual. She kept asking why Eliana had to die, and said how sad she was that the doctors couldn’t fix her. She cried about not getting to hold her more, and that she didn’t get to come see her more often at the hospital. She was so upset that Eliana was taken so soon after I had her. Her face was lined with pain when she told me she didn’t get to kiss Eliana goodbye at the funeral. To experience my child dying is the worst thing I have ever gone through. Watching my other child try to deal with her death is the second worst thing.

Toward the end of our talk, Elisabeth brought up having our pictures taken tomorrow. I asked her if she would like to take Eliana’s teddy bear with us to be in the picture, since Eliana can’t be here with us. She said she wanted to. It was something I had been thinking about doing all along, but it’s nice that it can be something to comfort Elisabeth too, not just make me feel better.

To be honest, I was having serious issues with the idea of having family pictures taken again. I know, I know, you don’t have to say it.  It’s something we need to do.  We have to do it for the girls.  I’ve heard all the admonitions. Perhaps unless you have lost a child you cannot really understand my strong resistance to having our photos done again.

My baby is not here. Eliana will not be in these pictures. Eliana will never be in any of our family photos again.  It seems so wrong sometimes to go on doing the normal everyday things that she cannot be a part of any longer. These thoughts race through my head, round and round without resolution. Motherly guilt and feelings of obligation compete with the gut-level conviction that I don’t want them done again……ever.

I’ve heard more than one person say that they have tried to complete a puzzle, only to discover that there is one piece missing. Do you know what they did with the puzzle? Donated it? Kept it and ignored the missing piece? No. They threw the puzzle away. I think there is something about being human that makes us hate an otherwise beautiful image that has one little missing piece. Just like I, motherly guilt and all, am going to, on one level, hate the otherwise beautiful image that is going to have one piece missing. The face that won’t be there is just as loved, and just as important, as the faces that will be there.

Elisabeth was able to go to sleep after letting her sorrow out. I’m not so lucky. Here I sit, typing away instead of getting my beauty sleep. I may look a little tired in those pictures tomorrow. The smile might be on my lips but not reach my eyes. At least I’ll have a good reason. Before I even see the proofs, I’ll know that there will be something wrong with them. I’ll get some anyway, but I’ll know that behind the image is a family grieving the loss of their daughter, their sister, and their granddaughter. It will be a picture of a family that is incomplete.

And always will be.

Sensitive material-use caution please.

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 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.

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