This personal and deeply moving guest post was kindly written for our blog by The Tangerine Owl Project. It recounts a grieving mother’s determination to plan a beautiful memorial for her baby daughter who lived for just 27 days. 

As I recall the days in the NICU and the loss of Delilah, I often wonder how I made it through in once piece.Usually I attribute this to my children and my husband. My husband was my partner who was also grieving and wasn’t afraid to talk about her or to let me feel however I was feeling without question or instruction. Our children were 3 and 4 at the time, and had come to see Delilah a few times at the hospital during hand-off between our parents and us. When we found that she was too sick to make it, we called everyone to the hospital and told them there that her condition was deteriorating and we were going to turn off the machines that afternoon.

Our 3-year-old saw all the tears and it evoked that same emotional reaction in her, not because she totally understood what was happening, but because everyone else was so upset…. but our 4-year-old grasped this concept, heartbreakingly clear in his response: “So she’s never going to come home with us?”  We nodded and hugged, and his face filled with tears as he said that he wanted her to come home with us so he could play with her and share his toys with her. Our pastor performed a baptism for Delilah with everyone there and then our family each took time to go in and see her one last time on their own, because when we shut off the machines my husband and I wanted to be the only ones in the room (besides any necessary medical staff).

And then it was time.

Time to let her go.

We got to hold her without the tubes, which we had never done; she was so purple and bloated because of the sepsis she didn’t even look like herself, but it didn’t matter. She was gorgeous. We did get to see those eyes, those beautiful eyes that Delilah had open one more time for us as we talked to her and rocked with her. She knew we were there.

And then she was gone.

It had been 27 days since she was born and I’d spent nearly that entire time by her side, and now she was just gone. I wasn’t in denial of anything, but that pain was unbearable, so then I did the only thing I could do at that point – I started working on the plan.

You see, I was an event planner by trade, running my own business for the last 8 years, mostly tending to weddings, but it was what I did. It was something I was good at, and something I enjoyed, and now it was a coping mechanism. There was never a question in my mind that we would have a memorial. She deserved to be shared with our family, she deserved to be known and acknowledged, even if her life was short, it meant something. So that evening from our hotel room, I got to work on the most important event thus far in my life.

It started with where she would be buried….we decided to place her grave in my hometown. We had lived in Champaign/Urbana for the last 8 years, but it was not our permanent home, so we didn’t want to bury her there knowing we’d leave. The hospital I’d delivered at was an hour and a half away from there, so that was completely out because we had no ties to it. Well, that plus the fact that my husband and I would’ve been happy to see that city firebombed to the ground for what we’d just gone through…… (relax ppl, we would never cause ACTUAL destruction, but man did we both want to at that time). My husband grew up between southern IL and his folks were now in Indiana which we didn’t get to often, so the most rational option was my hometown, where my parents still lived, along with a ton of my extended family, and a place that we visited frequently. It was only a few hours away, which was close enough for us, and I remember feeling that it was good because others would be there for her even when we were not. I got a referral from my mom on a funeral home who was going to work with the hospital to transport her body. We picked out a tiny casket for her, because there wasn’t really that much to choose from to begin with when they are that small. And then it was onto the most important things….. the venue, the ceremony, the flowers, and the music.

That’s insane, you may be thinking…..Why do those things matter? Well, they don’t matter to everyone, but they mattered to me. The reason they mattered was because it was important for us to share our little girl with those who had never met her. It was symbolism at its best, because that was the only way to do so, with the exception of sharing our stories of her. A baby is a baby right? And who wants to talk about dead babies? Just make them go away, it’s too sad a thought…… To all of that, I say WRONG.  As in life, babies have entirely different personalities, and should be treated as an individual in death. You’re right, no one wants to talk about dead babies, it IS sad and wrong that they die without a chance to experience the world, but it happens and she deserved recognition for her life, just as anyone who lived 115 years does. I didn’t care if it was awkward, she was going to be remembered, even if we were the only ones who showed up at the memorial (we weren’t).

Now, my husband’s dad was a former Presbyterian pastor. He had married us at a little chapel in my hometown, in front of 175 people almost a decade ago, so it was fitting that we would share that same space with our daughter and our other children as well. It was beautiful and was filled with the warm memories of the wedding, actually making it a tiny bit less painful to be the place we say goodbye. He would co-conduct the ceremony with our pastor Heidi who had made weekly trips to Peoria to see us and the baby while she was in the NICU. She knew our family well and I am forever grateful that she trekked to the burbs to do this for us, but it was equally meaningful to have someone who had been one of the few people who had actually met her to be doing the ceremony along with my father-in-law. They could speak for her knowingly, not just from what we told them about her, they had connection to her, and the words would be true and do her justice, as well as sharing her with those who never got the chance to meet her.

We had chosen my cousin and her husband as Delilah’s godparents when she was born (an easy choice as her two siblings were already the godparents of our other kids). Her husband was a talented musician, and we had asked if he’d be comfortable performing at the memorial, to which he kindly agreed. We chose the song “Hey There Delilah” by Plain White Tees as it had played a small part in her naming, because honestly, I just really liked it (the name and the song). We found out shortly after she was born that the nursing staff had sung that to her as they got her situated in her NICU room. it WAS for her. I wrote a letter to her, as did my husband. He was brave enough to read his at the service, but I was not able, so i had mine read by proxy. We had picked poems and readings that seemed well suited for her, and left the rest up to the resident officiants.

During our time in the NICU I was lucky enough to have a staff member suggest having pictures taken by the Now I Lay Me Down to Sleep organization. I will never be more thankful that professional photographers volunteer their time and skills to families going through loss. Our photographer was wonderful and had made it out before Delilah passed. Afterwards, she had compiled the images into a beautiful slideshow and set it to a hauntingly touching song.  I had watched it many many times at home, alone, sobbing my eyes out, almost forcing myself to experience the pain of her loss over and over again, but it was so remarkably done that I knew it was perfect to show at the memorial. I knew I would not possibly be able to hold it together when I heard that first note of the music and when I saw that first image of a stuffed giraffe she got as a gift, but it was such a tribute to her it didn’t matter.

The flowers were another piece of the puzzle, but I didn’t agonize over that. Orange lilies were it. Not only were they my favorite flower (inspired by my wedding planning days), they were vibrant and fragile just like our daughter. Delilah’s middle name was Evangeline and my husband had nicknamed her Lily for short as he spoke to her through the NICU isolette which made it an even more perfect choice.

We had everything in place, and the day came to lay her to rest. Valentine’s Day. You may also think this is insane, but she had passed away on the 10th of February, and I couldn’t think of anything better than to celebrate the love that we had for her. I knew it was setting up to be a bittersweet day for the rest of my life whenever February 14th hit, others would be out celebrating with their significant others, and gushing about flowers, chocolate and bling, and I would always be reminded of our loss, but strangely that didn’t bother me. At least there would be beauty around as well.

I had decided to get my hair done that morning and as the stylist asked if we had special plans for the day I found just enough voice to whisper that we were burying our daughter that morning but that I wanted to look my best for her. She nodded, and said she’d make sure my hair looked lovely for her, and it did. They probably thought I was nuts, I didn’t know if she would be watching over us that day, but if she did, I wanted her to know how much I cared.  I cared about my appearance on the worst day of my entire life. I didn’t wear black that day…instead, I wore a bright fuchsia dress because my daughter was anything but dull and frankly I wanted to celebrate her vibrancy and her unwavering boldness in all she did, plus it was a nod toward the holiday that celebrated all things LOVE.

When it was time to leave for the morning’s events, I almost collapsed into a heap coming down the stairs at my parents house because I didn’t want to….I couldn’t…. go through with saying the final goodbye and watching that little tiny casket be placed into the ground. We did the actual funeral only for our little family and our parents and a few of my cousins who may as well be our immediate family, but everyone else would be at the memorial immediately following. We had family fly in from other states just for a few hours to be there. Not because we made them, but because she had touched their lives and they wanted to be there. There were others who made the trek from Champaign to be there, and I couldn’t fathom at that time how much of an impact she had made.

I somehow made it through the memorial, I even found myself laughing as my goofy cousin cracked a joke, which was exactly what i needed at that moment.  It was more emotionally charged than I imagined, but it was perfect. All these small details that may seem strange to anyone else made perfect sense to me, and they all added up to giving others a little taste of what Delilah was like as a person. They were the right choices then, and they are still the right choices now.  We mourned. It was sorrowful and beautiful and angering and fulfilling all at the same time, but it was perfect. It was perfectly right for her and for us, and that is all that mattered.

 

The Tangerine Owl Project’s is a US-based charity whose mission is to support the financial and operational needs of the Infant Special Care Units (ISCUs) and Neonatal Intensive Care Units (NICUs) of Skokie, Evanston, and Chicago’s North Shore and to help families who have infants in these units through emotional support, through community resource education, and through service-focused improvements at the ISCUs and NICUs.

To find out more visit: http://www.tangerineowl.org/ or their blog page