One afternoon the week before Christmas, I moved through my typical routine. Put Eloise down for a nap. Velcro her Owlet on her foot. Attach her G tube extension. Pull and give the vitamins. Warm her feed. Pour it into the bag. Prime the line. Start the feed. Eloise is already asleep. Try not to wake her up. Shoot, she is stirring. Get out of there fast!
I moved on to the kitchen. Wash the syringes and bottles in the gray bin from the NICU. My friend told me about a larger bin she recently purchased from Target. I need to add it to the cart. I also need to message a doctor back on MyChart. I’ll do that when I finish in the kitchen. Wipe off the countertops. Wait. Why do I feel like I’m suffocating? I’m wearing a turtleneck and find myself pulling it away from my neck. Did I start her feed? Where have I been? I’m here but not here. What was I just thinking about? Do I hear the alarm? No, the alarm isn’t real. I’m fine. Everything is fine. Is the dog outside? It’s really cold. No, he’s inside. Okay. Good. Is my Xanax in my purse or the diaper bag? I don’t think I need one, but I need to know where it’s at. Keep moving through the routine. Yes, I started Eloise’s feed. I’m returning to myself, still pulling my turtleneck away from my neck. Maybe I’ll run out and grab the mail. The cold air will feel nice.
Am I crying? Warm tears are flowing down my cheeks, and I’m sniffling. Why are the holidays so hard? Why can’t I just feel happy?
Three years ago the week before Christmas we thought we lost Eloise. The alarm went off while I was doing the dishes. At first I didn’t worry. She was so small that oftentimes it simply didn’t have a good connection. The alarm continued, and I rushed into the living room where she and Zach were asleep. Eloise wasn’t pink. She wasn’t breathing. She sometimes had short apneic episodes, but this one was different.
A few days earlier I had set up the oxygen concentrator with the nasal cannula. I had practiced turning it on to make sure I knew how it worked. When we brought Eloise home on hospice, our house turned into a small medical facility. The closets were stuffed with medical supplies, and comfort medications like morphine could be found in the refrigerator. Call it a premonition, God looking out for us, whatever you want — I am glad the oxygen was set up, so that all we had to do, as we rushed Eloise to her room, was flip a switch and put the cannula under her nose.
In previous episodes when Eloise forgot to breathe, she needed stimulation to remind her to take a breath. She occasionally needed oxygen. When we put the cannula under her nose, she still laid lifeless on her bedroom rug. She was there but not there. Zach tried rubbing her chest and tickling her feet. He then flicked her feet. She would later have bruises on her feet from our desperate flicks. And then we prayed. Something about not wanting this to be the time, but if it is, then could God just make it clear, please?
Eloise made a sound — a good sign. I called our main hospice nurse. She was an hour away. My voice must have sounded worried. Our nurse called another nurse on Eloise’s team who had the day off but lived only a few minutes from our house. The nurse came running up the stairs to Eloise’s room wearing leggings, a sweatshirt, and Uggs. I still remember the pajamas I wore as we all sat around on Eloise’s rug watching her seemingly wake up. The nurse said her color was dusty.
Our main nurse arrived later along with our hospice agency’s nurse practitioner. They stayed with us all day. Someone else from the hospice agency ordered pizza and had it delivered to our home. I stayed in my pajamas and forgot to pump until the nurse practitioner reminded me. Eloise had another episode in the afternoon. Our main nurse grabbed Eloise from my arms and bolted upstairs to the oxygen taking the steps two at a time. Zach and I followed behind her.
We were shown incredible kindness on a very bad day, and I will be forever grateful. On this day, three years ago, our greatest hope was for Eloise to make it to Christmas.
When I woke up from my trance on this afternoon a few weeks ago, my mind felt trapped in this memory. I then realized the date and marveled at how my body remembered despite the years that have passed.
The duality of emotions surrounding the holidays has taken me on a twisting, turning, upside down, right side up kind of roller coaster. Sometimes I go to bed overflowing with gratitude. Eloise is here. We’re home. We crafted. We baked. We watched Christmas movies. We sang Christmas songs while dancing around the living room. We looked at the lights. We pulled off matching pajamas. Dare I say, this year felt like the closest resemblance of something “normal”? Something comparable to past holiday seasons. I feel the giddy, silly sort of happy that oozes lightness, love, and laughter. I’ve cried many, many happy tears this holiday season. And I’ve also grieved. It’s not but I’ve also grieved. It’s and. I felt the happiest I’ve felt in recent holiday seasons, and I also hit some personal record lows.
Eloise is here. Three words, a simple sentence found in the previous paragraph. Three words that carry weight I cannot adequately express through writing. Three words that signify Eloise is alive. Three words that signify her presence and weight in my arms. Three words that lead me to pause and think about the babies who were not here with their families this holiday season. We shopped for a beautiful ornament for a Christmas tree in honor of a friend’s daughter, and Eloise was the recipient of a Christmas gift in honor of another friend’s daughter. We miss these babies alongside their families, and we wish they were here. “Eloise is here” are words that I feel in the depths of my soul. My eyes fill with tears of gratitude for her life and tears of sadness for those not here.
“Eloise is here. Three words, a simple sentence found in the previous paragraph. Three words that carry weight I cannot adequately express through writing.”
After the day three years ago, I reached out to one of Eloise’s NICU nurses and asked her to connect me with someone who could make a dress for her out of my wedding dress — a beautiful dress for Eloise to be buried in. I remember this was an idea my doula brought up during the second half of pregnancy while we sat around a table at a local coffee shop early in the morning before a maternal fetal medicine appointment. She thoughtfully gave me resources that I wrote inside of a notebook, but I couldn’t take the ideas further when Eloise felt very much alive inside of me. Within a week, the NICU nurse brought the finished dress to our home. It’s a stunning dress, and she also made a small heart out of my dress, so that we would have a part of it to keep. It’s in a special box that’s stored with some of Eloise’s other keepsakes.
A couple of days ago I tried to organize some of Eloise’s items. New year, time to organize. I still needed to find a spot for a few decorations from her third birthday. When I opened up the storage container, I found the box with the dress, every single card Eloise has ever received, and decorations from past birthdays. I cried a lot in the hour I spent going through the storage container. I read the cards from my first graders that were addressed to Miss S or Mrs Singoltin or Eluwese. I moved the box with the dress somewhere else because I needed more room for the birthday decorations. The version of myself who hugged the NICU nurse when she dropped off the dress never thought this would be the reality three years later. As I moved the dress to a different spot, I experienced feelings of amazement and awe, and also feelings of deep sadness for having a reason to own this dress.
Speaking candidly, I struggle with these feelings coexisting, and this struggle intensifies around the holidays. The holidays are supposed to be filled with cheer. The New Year is supposed to mark a time of fresh starts. This is what’s plastered all over social media, so I consequently plastered a smile on my face in an effort to have the Merriest Christmas and most refreshing New Year. In my holly jolly efforts, the hard stuff existed just below the surface. I felt the pressure building up, and last week I spent dinner with tears flowing into my bowl of beef stew with a box of Kleenex as my side. I had hit a wall. Of course there’s a part of me that wishes, like really, really wishes, I could ignore the sad feelings and pretend they don’t exist. Come on, just look at the bright side! I guilt myself into thinking, “Don’t I have so much to be grateful for?” Because I do have so much to be grateful for. And I wish I could simply look at the bright side.
Real life is both – good and bad. Real life exists around the holidays.
Real life exists when we make cookies for Santa – feeling proud of Eloise for adding the sprinkles and disappointed that she can’t eat one.
Real life exists when we open presents – feeling excited about the gifts we picked for Eloise and bummed that we will always open them for her.
Real life exists when we look at Christmas lights – feeling happy we’re checking off a bucket list item and exhausted from an afternoon spent calling numerous specialists.
Real life exists when we celebrate the New Year – feeling hopeful for the future and fearful for what’s to come. Will she have hospital stays? What hard conversations will happen this year? When will the other shoe drop?
“In the space of Google Docs, good and bad harmoniously exist through my typed words, but I struggle in my everyday life. I do not leave room for both even though I want to exist with both.”
Within all of these real life moments, we found middleground, too. Eloise had a small lick of frosting when we made cookies, and we tried an adaptive wrapping paper trick to encourage her involvement. Middleground for us involves thinking outside the box, and this takes effort in the midst of navigating the high highs and low lows.
I suppose my goal for 2023 is to visit, and maybe even live in, middleground more often. I don’t know what exactly this world looks like, but I think I’d like to visit this emotional space and stay awhile. I’ve spent much of the last three years riding the extremes of all good or all bad. I know in my head that real life is both; it’s what I blab about in my writing. In the space of Google Docs, good and bad harmoniously exist through my typed words, but I struggle in my everyday life. I do not leave room for both even though I want to exist with both. I do exist with both every single day. I frequently ask my therapist some variation of the question, “How can I keep going?”
It’s kind of a rhetorical question, but I long for a real, tangible solution. Relentlessly advocating for Eloise is the hardest job I’ve ever attempted. I’m also her mom and her caregiver. Sometimes at the end of the day I ask myself, “Was I enough of a mom today?” In other words, did I do enough nurturing and snuggling, or did I focus too much time on the phone calls and therapy exercises? Every single day is a delicate balancing act. How can I be a mom and a caregiver? How can I process trauma from the past while I’m trying to get through the here and now? How do I continue to talk about Eloise’s struggles that no one seems to have answers to? How do I continue to interact with a broken healthcare system? Why doesn’t this doctor seem to hear the words I’m saying? Am I saying yes to the right interventions and no to the wrong ones? Should I be doing more? Am I doing enough? Am I too much? Am I unhinged? Why doesn’t my family seem to understand the hard choices we’ve made to keep Eloise healthy?
I love being Eloise’s mom. It’s unimaginably hard. It’s unimaginably beautiful. Middleground. The place I want to visit. A place where my mind is calmer. A place where emotions can be felt freely without judgment. A place where I stop asking so many questions and just exist.
