Monthly Archives: June 2012

Anniversary Days

Lucy would have been three months old today. What are three month old babies usually doing? I don’t think Lucy would have been doing the things a term baby would be doing at three months. She’d still be in the NICU now. We’d still be in Bakersfield, pumping and washing and driving back and forth across town to see our little girl. Now I always just feel like I’m waiting for something – waiting to be told I can go back and see her again. I’d do almost anything to see my happy, brave, sweet baby again.

I think days like this are always going to be hard. There’s her birthday, March 28th, the day she died, May 21st, and my original due date, July 24th. But then there are the 21st and the 28th of every month, and there are Wednesdays (when I think “she would be x weeks old today”), and there are Mondays, the day she died. I’m hoping over time those smaller anniversary days will stop being so difficult, because it’s hard to live life when every Monday, Wednesday, 21st, and 28th are especially painful. Today, though, is too early to think about that. Today was really hard.

For the first week or so after Lucy was born, I would feel phantom kicks. They’d make me happy for a second before I remembered that there was no baby there to kick. After a while, I didn’t worry about that so much because I had Lucy to worry about, and she made me so happy. Now there are different phantoms: the tiny sounds she made when she was trying to make happy sounds while we cuddled, the hum of the machinery keeping her alive, and – above all – the alarms beeping from her monitors. That sound haunts my dreams still, and I don’t know when it will stop. I hated it, hated it so much then, but now I miss it because it meant she was alive and I still had to worry about her.

We’re slowly moving forward. Things are strained, but we’re making plans. I’m finding it helpful to try to plan a course of action to ensure that what happened with Lucy never happens again. I’ll post more about that later when I figure out what I’m going to do, but it looks like there is at least one good option for us. That makes me feel a little hopeful, but also makes me so mad. Lucy was perfectly healthy, and she didn’t have to die. If I’d known about this procedure, or known that I might need it, I’d be looking forward to another happier anniversary day – Lucy’s birthday, in about three weeks.

One month

Today it’s been one month since Lucy died. In some ways the time has gone way too fast, but it’s also been the slowest month of my life.

I think about Lucy all the time. If I’m not distracting myself with other things, she’s all I can think about. She would have been almost three months old. We would have been seriously thinking about taking her home. She would have been off the ventilator and I would have been able to hear her cry. That’s one of my biggest regrets, that I never heard her voice. We’d be holding her all the time, and she’d be getting so big.

We’re still working on our new house, but we finally spent our first night here last night. We weren’t in that much of a hurry to leave my parents’ house – it was nice to have the extra company and support. It’s nice to be in our own home now, but it’s hard in a lot of ways. Things keep going wrong, and they feel more overwhelming than they would have before. The hardest thing, though, is the fact that we bought this house to be Lucy’s home. Everywhere I turn, I see the things I wanted for her here. I wanted the blue room, now filled with boxes of her things, to be her room. I wanted to teach her to swim in our pool. I wanted to teach her to cook in this kitchen, and plant flowers and vegetables with her in the garden. I can see her running around playing, and sometimes I can almost hear her laughing. Whenever I think that none of that will ever happen, the pain is just too overwhelming – I feel like it’s crushing me.

Most of the time I feel like I’m sort of okay, but it doesn’t take much at all to make me crumble, and that’s when I feel like I will never be okay. A couple of weeks after Lucy died, we were eating out, and I overheard a lady at the next table saying “isn’t it so sad about that little tiny baby that died?” I don’t know for sure they were talking about Lucy, but in a town this size, I’d say it’s a fair assumption. That gutted me. They didn’t know who I was, they were just talking about a tragic thing they heard about. It’s weird being the victim of the tragedy instead of the observer. Another time, a salesman in a furniture store asked us if we had children. Such a simple, harmless question, but it was the first time we’d been asked since she died. I froze – couldn’t say a thing. Finally, not wanting to explain, David said no, but that felt wrong. Maybe next time we’ll be more prepared. Yes, I have a daughter, but she passed away. Why couldn’t I just have said that?

I’ve always sort of had a taste for drama, but only indirectly. As a child, I would lie awake at night imagining these heartbreaking scenarios: me on my deathbed, saying goodbye to friends and family, somebody I love dying tragically, etc. I’d get myself all worked up, have myself a good cry, then go back to sleep, secure in the knowledge that nothing like that would ever happen. As an adult, I’ve often enjoyed a sad movie or book – they’re cathartic. But now I’ve lost my taste for drama and tragedy. Having experienced the trauma firsthand, I’ve found that those things aren’t cathartic anymore. Is there such a thing as catharsis for me anymore? When I do break down, it doesn’t feel like a relief, it just feels like a temporary release, letting out some of the grief like the vent on a pressure cooker. As soon as I stop, the pressure starts building again. I think that what will happen eventually is that the time between breakdowns will slowly increase, and maybe I won’t feel the need to cry on David’s shoulder every single night before I can sleep. One day that will happen.

Well now I feel like I’ve been a bit melodramatic. I’ve been trying to regain some of my former cheerfulness and optimism, but some days are harder than others. Today is definitely harder. We’ve been without our baby for a whole month – half the time she lived! – and all I can think today is that we have a whole lifetime of this ahead of us. A whole lifetime without Lucy is just not something I can be optimistic about right now.

Hard things

A week ago today we went to pick up our daughter’s ashes. You can’t really prepare yourself for that. What’s left of her, physically, fits in a tiny little bag. It’s hard to connect that tiny bag of ashes with my tiny-but-beautiful Lucy, but it’s all we have left of her (again, physically, because that’s not her anymore, and because she’ll always be with us). We just wanted to take her home with us. Now we just have to find a nice spot to scatter her ashes.

Last Saturday was Lucy’s memorial service. It was a nice service, we thought, and it was really good to see how many family and friends came out to support us. I know many others wanted to be there, and that means a lot to us too. It was a strange day for us. Up until that point, there were so many things that needed to be done in preparation that we didn’t have much time to stop and think. We still have a lot to do (for example, we haven’t even begun to deal with the hospital bills, insurance, social security, and Medi-Cal), but that day marked the end of the days we had to think about. Since then, I’ve felt kind of lost. We’re still trying to move in to our new house, which takes up a lot of time, but not a lot of thought. I just want things to go back to normal, only I don’t know what that is anymore. We’re just trying to figure out how to live our lives without our little girl, and that will take a while.

I originally thought I was handling my grief pretty well (which made me feel guilty, because didn’t I love my daughter?), but I’ve been disillusioned. As David said earlier, there are more and more contexts now that make us think of her. I’ll be feeling okay, then I see a little girl playing with her daddy and all that grief comes bubbling to the surface. It’s all I can do to get someplace private before I completely fall apart.

Little things that people say can really upset me too. Most things don’t bother me too much – I know they’re just trying to offer whatever comfort they can. One mortuary employee even went so far as to suggest that we might not even want to raise a child in today’s world. I just nodded and thanked him for his kindness, but no, I really did want to raise my child, thank-you-very-much.

What upsets me more are the comments that seem to underestimate Lucy. I’ve heard people say things that make it sound like Lucy’s death was inevitable, and I’d like it made clear that her death was by no means inevitable. She’d made it past most of the major hurdles, and until a couple of days before she died, everyone thought her chances were excellent. Her sudden turn for the worse took us all by surprise, including her doctors and nurses, I think. We were not deluding ourselves about her condition, nor was it wishful thinking to imagine her coming home with us.

I also don’t like people to say the doctors kept her alive like they performed some miracle. While modern neonatology is pretty miraculous, and while her care team was amazing, Lucy kept herself alive. The doctors, nurses, and respiratory techs gave her every chance, and she never would have survived without their excellent care, but it was Lucy’s strength that made the difference. They always said it was her game, that they were just reacting to her and trying to give her the time she needed to grow strong and live. And she had an incredible will to live. That was all her. She was an amazing little girl, she just wasn’t big enough to handle the level of infection that finally overcame her.

I know most of you don’t need to be told any of this, but it feels really important that everyone understand that about her. She was stronger than she ever should have had to be, and stronger than we ever expected her to be. Our girl was a fighter from the beginning, but by the end she was fighting overwhelming odds.

I don’t know where to go from here or what to say. I guess it will start to get better eventually, but it’s pretty awful now, and I don’t see it improving very quickly. I do want you all to know, once again, how grateful we both are to all of you, to every single person who spared a thought or a prayer for us during this whole experience. It makes everything a little bit better and gives me hope for the future. Thank you.