(I’m behind on cross posting – sorry!)
The day after Christmas was Olivia’s first birthday! There are a lot of feelings that have been rushing in and out the last few weeks as we’ve been trying to prepare ourselves for this day. And it feels oddly normal and I am welcoming that with so much joy and comfort – two words that have felt so distant at times in this past year.
Last Christmas morning, as Oscar and my nephews ran around my mom’s living room hopped up on sugar and excitement with torn wrapping paper and new toys strewn about, I leaned over to Casey and said, “Can you believe there will be another one next year?” In my head I wondered if she would be walking by Christmas or if she would be babbling any coherent words. I wondered if she would fit in Oscar’s Christmas PJs that were hand-me-downs from my nephews.
By the next evening I was wishing I had never said that to Casey. I was wishing I could wipe away that memory forever. It was too painful because I didn’t know if we would have a toddling baby next Christmas. The thought that grief would be forever linked to Christmas broke my heart. I kept pushing the memory aside, but it kept creeping back. It felt like torture at the time, but maybe it was God telling me to hold on to that hope. That joy.
In the hospital room while labor was progressing, one of my midwives asked me how I was feeling about unexpectedly delivering at a hospital 8 weeks early. I shrugged and said, “I’ve surrendered this whole thing at this point. The baby is coming one way or another.” Surrender ended up being the word for the year and it has twisted me and changed me and made me see hard things about myself. But early on that word gave me a lot of peace. If I surrendered this chaotic and emotional situation to God then it took some of the heaviness off of my shoulders. So, I asked for peace in God’s will while I surrendered control and expectation.
I remember thinking that if I were to pray for a miracle I don’t even know what the miracle would be. Would it be for that white plaque to just slip off and disappear if she does live? Is the miracle just asking for her to simply make the month that they said she may not live through? I silently asked God for both. Little did I know that those plaques would come off and she would fight through that month and come out on the other side.
The morning after Christmas I kept feeling the urge to pee and was surprised how much leaking was going on. I didn’t feel great, but I chalked it up to all the weird things that happen during pregnancy and being exhausted from Christmas. I checked in with my midwives and we all decided to just keep an eye on things. Looking back I was obviously in labor, but it was a solid two months before my due date so it was easy to push things aside. I tried to go about our day. When we sat down for lunch at a local restaurant I kept having the urge to pee. The last time I went to the bathroom there was blood in the toilet. I felt like I had the air knocked out of me. This is so early. I caught my breath, texted the midwives, walked back to the table and told Casey there was blood and we need to go to the hospital now. I remember feeling nervous, but I tried to stay calm for the sake of everybody else. We made it to the hospital where my mom works and she took lunch and came up to be with me while I checked in. At that point I was still hoping that we could just go home after this. That they would just monitor the baby for a little while, tell me to rest and take it easy, and then we could just go home. But, it was clear that I was in active labor and it wasn’t slowing down anytime soon. After an incredibly traumatic hospital birthing experience that I’m still working on processing, Olivia was finally born. Although I like to remember it as thinking everything was fine until I saw her, I knew that everything was not fine for most of my pushing. The way the nurses and the doctors were acting put me on edge. I knew in my heart something wasn’t right, but I couldn’t figure out what.
I was waiting for someone to bring her to me and as I turned around to sit on the bed, I saw Casey and my mom crying and consoling one another and I didn’t understand what was going on. The neonatologist held her up for me to see and said, “your baby has a rare condition and you can either hold her now for her last breaths or we can try to stabilize her.” I remember wondering as a Catholic what I was supposed to say right then. I guess take her? That’s the right thing, right? I later learned that although her vitals were fine, the plaques restricted her chest cavity and covered her nostrils and she was at a high risk for infection due to the deep fissures between the plaques.
It felt like there was a mad dash of activity and then it was all gone. I remember sitting in the hospital room with the lights low and the evening nurse, and our friend, Michele, and my mom. Somewhere in there we made the decision for Olivia to be transferred to UCSF, we visited her trying to see her through the plaque and the wires and the dressings. I got cleaned up, showered, and changed into my clothes. I remember that I was annoyed that the water didn’t get very hot. We waited for the priests to come to do an emergency baptism. They didn’t make it in time, but they prayed with us and for us and for Olivia. What is most clear is sitting in that room that all of the sudden felt so big with an empty bassinet where Olivia was supposed to be, and just not knowing what was going to happen next.
Those first few days and nights in San Francisco I was running on pure adrenaline. Poor Oscar was sick for the first time and it killed me that I couldn’t be with him. As I walked to and from Olivia’s room, the family lounge, and the cafeteria I saw people going about their days and other parents who looked fine. I wondered, “how can you look so okay when your baby might be dying?” How is no one else looking like how I feel? How can there be any joy here? Every time I saw little girls and babies all around the hospital I felt a pang – will Olivia make it to that? As time went on and Olivia stabilized, I’m sure other moms saw me in the NICU and wondered the same thing. It all became routine for us. We woke up, ate breakfast, walked to the hospital, took Oscar to the playroom, checked in with the nurses, waited for rounds, got Oscar from the play room, had lunch, went back to Family House and napped, went back to the hospital, had dinner, put Oscar down, and often went back to the hospital or sometimes I even slept.
It all feels so far away – all of the emotions and the intensity and enormity – but things do happen that bring it crashing back to the forefront. Days before Olivia’s first birthday she had a procedure scheduled and I found myself in the high energy of advocating again. I prepared myself for being back in a hospital setting so close to her birthday, the anniversary of the start of the Year of Surrender, but there are just things you can’t prepare for. We were given the wrong procedure time, which means that her food and fluid were cut off 2 hours earlier than they needed to be. I found myself holding back the wrath growing in my chest as I calmly explained that we have special circumstances. I hate bringing this up because I know medical professionals hear every parent talk about why their kids need extra attention and care, but in this case I actually have a foot to stand on. But, I’ve learned make friends and be part of the team, and when you get them on your team you can move mountains. And it worked because it always works, but it’s exhausting. It’s exhausting to push aside my anger and frustration and twist my assertiveness to be friendly with a forced smile. It works so it’s worth the effort, I tell myself over and over again. Surrender the burden, the exhaustion, the sadness, the frustration – I know I have to surrender those feelings, too. Hand them over and choose to keep working for the light, for the good. Because there is light and the darkness did not overcome it. The darkness will not overcome it. And isn’t that the whole point of the waiting in Advent and the joyous celebration in Christmas? Olivia has taught us this over and over again. Her birth and her life have humbled our whole family (both natural and chosen families) in ways that we never saw coming. For me, she has taught me to surrender to what I cannot control. She has taught me to stay focused on the hope and the light because the darkness will not overcome it, and in the end there will be joy and peace.