A parting note, plus memorial service details

***Memorial service information is at the bottom of this post if you don’t want to read it all***

I’ve been putting this off since she died, but there are some things I still need to say.

It has been the hardest and most awful thing we’ve ever had to do, to try to live our lives without Lucy. I never thought I’d be planning my daughter’s funeral. All of this came as such a surprise, too. She was so strong that none of us knew how sick she was with the yeast infection, not even her doctors. By the end, it was clear that it had made its way to her brain and into her bones. At some point I will write specifically about what happened at the end, in case other parents of micropreemies chance upon this blog and need to know, but I can’t yet.

Right now, we’re just trying to be grateful for the time we did get to spend with our beautiful baby, although it’s so hard not to focus on all the time that we’ve lost. It’s devastating to know I’ll never get to hold her again, kiss her sweet chubby cheeks, wash her fuzzy hair, teach her to swim, take her to the park . . . the list is too long. I will always regret that she didn’t get to meet her great-grandparents, her Uncle Adam and Aunt Shelby, and all of the friends and family who would have loved her – DO love her.

The guilt is almost crippling. Guilt that I couldn’t protect her. Guilt that I couldn’t keep her inside me long enough (because none of this would have happened to her if not for that. She was perfect). Guilt that I didn’t spend more time with her while I could. Guilt that my body is already recovered from her, and done making milk to try to feed her. Guilt that I’m not crying enough, not mourning enough, because how could it ever be enough? Guilt that I can still smile, even though it hurts. Guilt that I know I’m going to be okay eventually. Guilt that I didn’t love her enough, because I feel like if I had just loved her hard enough, I would have been able to heal her. I’m not asking anyone to tell me it’s not my fault, because logically I know. I would have done anything to keep her inside longer, to keep her safe, but I couldn’t. I would have spent more time with her if I didn’t have to sleep and keep a strict pumping schedule, and if I hadn’t been sure I’d have plenty of time later to make up for it. And I know that the only reason I still had any milk at all was because I followed such a strict regime – I tried so hard to have enough to feed her, and it was heartbreaking to throw it all away. I know, in theory, that I can only cry so many tears before physical and mental exhaustion requires a break before I can cry again.

I don’t know when I’ll stop feeling guilty for living my life, though. I’m terrified that I will forget her. I’m terrified that I’m forgetting her already – how her face looked, how she smelled, the feel of her in my arms, how it felt to nuzzle her neck. It’s hard to think about any future children we might have, because even though we both want them, it feels like a betrayal. Putting together our new house – the house that should have been Lucy’s home – is both exciting and awful. Her crib is still unpacked in her room, her changing table against the wall that was so lovingly painted by her grandma. And things still make me laugh, but half the time the laughter turns into tears. I can’t believe how much it hurts to laugh.

As bad as it is, though, I know it will get better. Lucy was aptly named – her name means “light.” She brought more light and joy to our lives than we ever imagined possible, and her light spread to everyone who knew her or followed her story. So many people – complete strangers even – reached out to us, prayed for us and for Lucy, and kept us in their hearts. I never before knew how it felt to be lifted by the love of so many, and it has gone far in sustaining us.

We also met the wonderful people of the Bakersfield Ronald McDonald House because of Lucy. You are all amazing people, and you took such good care of us when we most needed care. You housed us, fed us, and you became our friends. We will never forget you, and we plan to continue to be involved in your mission. We love you guys.

I hardly know how to begin to thank the NICU staff at Mercy Southwest: doctors, nurses, respiratory technicians, social workers. Lucy received the highest quality of care, and we found ourselves grateful to have ended up at this hospital and this NICU on several occasions. You are all such wonderful, competent, compassionate people, and I’ll never be able to thank you enough for taking care of my baby. I hated to leave her every single time, but was always comforted knowing she would be with you. You are and always will be like family to us, and we love you. Thank you, thank you, a thousand times thank you, and it will never be enough.

Meeting all these wonderful people, spending time with new friends, and mostly having and loving Lucy, has changed our lives forever. She touched so many people, and she inspired us with her strength and determination to live our own lives better.

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We will be holding a memorial service for Lucy Anne on Saturday, June 2, at 2:00 pm, followed by a small reception. It will be held at Crossroads Community Church, 235 N. China Lake Blvd., Ridgecrest, CA 93555. Everyone is welcome. If you’d like to make a donation, it can be made to the Bakersfield Ronald McDonald House (or your local Ronald McDonald House). It’s a wonderful charity, and we owe them so much.