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.