"She proved her name was perfect."
A Short Time that Means Everything
After a fatal diagnosis of Trisomy 13 at 13 weeks gestation, our second child, Ari, was not expected to survive pregnancy, labor, or delivery. But our little girl fought with bravery and courage through every challenge laid out in front of her. Ari Harper was born at 37 weeks 5 days gestation on Thursday, April 13, 2017. Devastatingly, the celebration was short lived as she took her final breath at our family home just 9 hours and 51 minutes later. Our time with her was much shorter than we expected, but that time meant everything to us. It was both the best and then the worst day of our lives.
As one can imagine, the joy of our pregnancy was overshadowed by fear and a whole list of unknowns from the moment of diagnosis. It was constantly touch and go, not knowing if we would get the chance to meet Ari or bring her home. Both routine and additional follow-up appointments filled our calendar as the medical team kept a close watch on her progress and health. They found one thing “wrong” after another. But she kept fighting and all we saw was our beautiful and brave daughter, not a list of medical issues.
Better or Bitter
We had set 3 goals for Ari: 1) For her to survive pregnancy, labor and delivery. 2) For us to hold her alive, to meet her brother, and family, no matter the length of time. 3) To come home to our family home. With the diagnosis of Trisomy 13 you have to be prepared for minutes, to hours, days, weeks, or months that your child may be able to survive. We tried to plan ahead as best as we could, but looking too far in the future induced anxiety. One day at a time is what we decided. If we needed a special stroller, we’d get it. If we needed to move into a house, we would. If we needed to install a wheelchair ramp, we would make it happen. We would do it all, but one day at a time. At one particular appointment our ultrasound technician graciously shared her story of her daughter who passed away at only a few days old from a similar chromosomal disorder, Trisomy 18. She voiced her fears and challenges from her family’s experience, some of what we could possibly expect with a similar diagnosis. She reminded us that we had permission to do what we felt was best for us, for Ari. And then she said something that has stuck with me ever since the words left her mouth, “all of what you will experience can either make you better or bitter… and you get to choose.” Better or bitter.. it is a choice. OUR choice. We continued to have faith, focused on hope, and did all of the necessary things that were in our control to try to keep Ari growing strong. We fostered a bond through memory making, going places to explore, the parks and zoo and I continued to workout alongside my husband Brandon. This time together grew our connection as we shared our thoughts and feelings, while releasing emotional energy with a healthy outlet. I journaled to Ari, recorded daily highs and lows, appointment details, and our progress. I documented her milestones, all of the dreams we had for her, and the prayers we prayed. We did all of what we felt we could do with something so completely out of our control. This is a lesson I continue to carry on this journey. As time grew closer to her due date, she seemed to be thriving, so it was hard at times to accept the reality and severity of her diagnosis. Though her little body was growing at a slower rate, she seemed content and absolutely comfortable. We cherished every kick, jab, and hiccup. It was her way of telling us that she was not giving up the fight, so neither were we. We continued to constantly pray for a miracle, that we would get the chance to meet her alive, and time to kiss and hug her, memorize her smells, bathe her, rock her, read to her, and just pour love out onto her! It was our desire to give her exactly what she gave us -- unconditional love. And we knew that as soon as she arrived we would wish time to stand still!
9 Hours and 51 Minutes of Life
On April 12, my water broke. With my husband, older sister and friend capturing moments with photographs in the room, Ari flew into our doctor’s arms after only three short pushes. Ari was born at 12:24 a.m. Relieved, tears streamed down my face and as she laid on my chest, Brandon rested his forehead on mine. She made it… goal #1 complete. Our son Chase, both sets of our parents, my younger sister, and our pastor came to see our little miracle. Our family was together. I had never felt such peace like I did in that moment. No past or forward thinking, just being in the here and now. Ari was swaddled and held almost the entire time. From cuddling and kissing her, reading to and giving her a bath, we made memories. She made the sweetest little whimpers, never a full cry, and everyone was smitten with her. Goal #2… complete. Our medical team knew we wanted to get her to our family home so as soon as my epidural wore off, we were discharged from the hospital. Upon leaving, the last nurse on our team wheeled Ari and I into the lobby while Brandon got the car. She prayed over us and that is a gift I will never forget. I held Ari in my arms on the drive home and the song "Home" by Chris Tomlin played on the radio. I was scared. We were scared, but we also knew hospice was going to meet us at home shortly afterwards. I carried Ari in as Brandon grabbed all of the bags. We made it home. Another milestone… goal #3… complete. But just 30 minutes later, Ari took her final breath in my arms and passed away after 9 hours and 51 minutes of life. Ari was now home in her forever home.
We honored our beautiful daughter in a private memorial at our church just six days after Ari died. Led by one of our pastors, it was nothing short of perfection. An intimate setting for just our family allowed us to fully remember every detail of her life. I wrote and read aloud her eulogy. As her mother, I was blessed to share the most time with her as she grew inside of me for 37 weeks and 5 days. While I spoke words of unconditional love, depicting who she was and how much her life had already impacted so many, Chase was passing out tissues which brought a little lightness into the space. My brother-in-law and sister each took a moment to share a few words, too. This was a gift. To hear from someone other than myself how Ari, in just 9 hours and 51 minutes, left a mark on their hearts so big that she will never be forgotten. And that is something I believe every bereaved parent wishes, to hear their child's name and to be remembered.
Ari's Legacy - the Interconnection of Love and Grief
I find the piece of Chase missing Ari one of the hardest parts of all of this, especially when he sees other kids with their siblings, another baby is born in our family, or his dad and myself are not able to occupy his time. He gets lonely, upset, and certainly confused by the unfairness of it all. He is sometimes overcome with anger and sadness at times that he can’t even explain why or from what. But we know. As an adult, this is hard to process, but I can’t imagine what goes on in a child’s mind and heart. There have been and will always be lots of talks that we never even thought we would have to share with him that are now a weekly reality. Though certainly unfair, it is because Ari was here in the first place that these conversations now happen. And I am learning to be okay with that. Joy comes from witnessing the continued bond between our children. A bond able to reach beyond the boundaries of this life. Chase will remember Ari, I don't worry about that. He talks about her daily, snuggles up with her blanket at night, he's even taken on my ritual of sniffing the bottle of soap that is her smell. He reads out loud to her, prays for her during every prayer, and draws and paints pictures of our family. He dreams about her and shares their time together with us in detail. He randomly yells "Hi, Ari! I miss you!" up towards the sky and waves to her or blows her a kiss. On sunny days he asks to blow bubbles to see if they will reach her. They play together, it's just different.
Ari’s death, like so many things, was out of our control, out of my control. What I came to understand is that I do have control over the choices I make in any given circumstance. Every single day, every single choice. I did not want her life, her death, or this pain to go unused. I am the only one responsible for my grief and how I choose to live it out. It is a privilege to be the owner of such pain that is rooted by unconditional love. And this pain I now carry fuels my purpose. I made a promise to honor my life in order to honor hers. And I try my best to stick to my promise no matter how hard, messy, and ugly. We are moving forward, some days maybe even backwards, but never ever are we moving on. Losing Ari hurts, it always will. Grief is here to stay, but where there is grief, there was first a great love. Love and grief are interconnected, you can't have one without the other. We simply cannot heal or recover from our grief. We learn from our grief, we adjust, and try again. We discover a new layer of ourselves. They say ‘it’s okay not to be okay’ (in fact, there is a grief book bearing that title), and I feel this. But it is also NOT okay that I am not okay. I am a continuous work in progress on being okay with this, reconstructing and rediscovering life in the ‘after’. There are moments when this feels impossible, but I am still here, we are all still here. It takes a lot of work. It takes being an active member in our healing. It takes reminding ourselves that life threw a really hard challenge our way, and that we didn’t choose to have to be this strong, but my goodness we are resilient. This pain that comes with losing a child is devastating. But I also see it as a gift now, not an enemy. It is a connection to our Ari. Our grief is massive because our love is massive. Sharing their story is so powerful not only for our healing, but for others, too. I believe one of the greatest gifts we can give our children is to live our lives fully, no matter how daunting or hard it may seem. It is so possible. Adversity is inevitable, but growth through it is optional. Looking back, I could not see this. Some days I can’t believe it has been as long as it has, while other days it seems like just yesterday. And believe me, I would give back all that I have learned so far on this journey just to see her again. But I know this is not an option. When I am feeling sad, unmotivated, and tired, I still feel her in those moments. And because I love her, I am okay with feeling that way. To go on and continue to honor our lives, we honor Ari and that is also a gift. I now am a grief wellness mentor helping bereaved parents through my mission-based company, Grieve. Breathe. Believe., providing online and in-person grief support – mind, body, and soul. www.grievebreathebelieve.com www.betternotbittermom.com/conference FB and IG @grievebreathebelieve
Submitted with love by Ari's mom, Lisa Price