Ari. The BRAVE Little Lion.

After a fatal diagnosis at 13-weeks gestation in November 2016, we were told our second child was not expected to survive pregnancy, labor, or delivery. The diagnosis, Trisomy 13 - a chromosomal disorder that disrupts the brain’s ability to tell the body and its organs how to function. Devastation set in. Little did I know how hard this journey was going to be, how beautifully painful and painfully beautiful, at the same time.

At 37, I was considered high-risk and “advanced maternal age”. Naturally, it was recommended by my OBGYN to go through first trimester screening “for peace of mind".  My husband, Brandon, and I met with a genetic counselor to review possible genetic risks and chromosomal abnormalities sometimes found in the babies of us “older” moms. We heard the word "Trisomy" for the first time, about 50 times. With no family history to cause concern, we sat in this meeting with confidence that all was well. A quick blood draw, nuchal translucency ultrasound, and we were out the door. We left the genetic counselor appointment without giving another thought to “Trisomy” anything.

Later that week we told our son, Chase, that he was going to be a big brother. It still brings tears to my eyes to watch the video of us sharing the news and I am so grateful that we have it. With his little, raspy voice so giddy with excitement, and a smile extended ear to ear, he put on a “big brother" shirt gleaming with pride. This is a moment we will never forget. A few days later, everything changed…

My phone rang. It was the genetic counselor with the news that the screening results came back positive for markers of Trisomy 13. What does that mean? I couldn’t remember. I just remember hearing “trisomy” multiple times when we met with her just a week prior and it wasn’t good. Collapsed on the kitchen floor, I was completely caught off-guard.  Yet the counselor provided a glimpse of hope as she mentioned the results had an 80% chance of error or a false positive. Whew.. that’s us! Next step, perform a procedure to confirm that we were the “80% chance”.

Back at the hospital a few days later we met with the genetic counselor again. This time I was intently listening to every word that came out of her mouth. She went into great detail about the “abnormalities” of Trisomy 13 babies; how it occurs, the different types, and a list of complications so long we didn’t even get through them all. She stated it is quite severe and most families terminate or leave the hospital without their baby. She continued on with memorial and funeral options if we chose to carry. This crossed the line and she is lucky I did not climb across the table between us and tear her apart. We hadn’t even done official diagnostic testing and our baby was already labeled deceased. My emotions quickly shifted when asked if we wanted to know the sex of our baby.  My focus went from the scene in my head where I was punching her in the face to our sweet little… baby girl. The genetic counselor left the room to give us privacy. Brandon and I just stared at one another with tear-filled eyes and said, “we have our girl!” Every horrifying detail mentioned about “Trisomy” in our meeting dissipated. 

Onto diagnostic testing; a painful procedure that involved inserting a long needle through my abdomen into the placenta to collect chorionic villi. Though incredibly uncomfortable, we saw our daughter’s face and heard the glorious sound of her heart beating. It was so strong. Tears rolled down my cheeks, both from the discomfort and uncertainty that lie ahead, but also from the perfection and beauty I saw on the monitor. I stared at her perfect face and focused on her example of strength. She made me BRAVE.  We were in this… together. 

I Googled names that meant courageous and brave right after our appointment. Ari was the first name to appear and I couldn’t think of a more fitting name. 

The day came with the diagnostic test results. The wait was over. On an unseasonably warm November day at the local park with Chase, my phone rang. One phone call completely shattered my heart. “Mrs. Price, I am so very sorry, the results came back positive for Full Trisomy 13”. Horrified and in disbelief, I fell to the ground in agony.  My body physically hurt, like I was struck by a freight train. I knew this was a possibility but was 100% certain we were the “80%” for a false positive. I was frozen. I couldn't process it. Her words felt foreign and I just kept replaying what she said over and over in my head.  I couldn’t bear the thought of telling Brandon, telling Chase. My friend who was with us at the park hugged me tight and apologized for the news. By now, Chase noticed and ran over to me.  Quickly, I pulled myself together and tried to dry my face. He asked what was wrong and as I hugged him I said that I had heard some really bad news, but he had school in 10 minutes and we needed to go. My girlfriend offered to take him, and at first, I said ‘yes’, but then I felt the need to do it myself. “Life needs to continue”, I thought. (Note to readers and future self: let people help!)

As we drove to school, I kept my composure, kept my BRAVE face, but that was the last thing I could have felt in that moment. Before we got out of the car, I prayed over Chase and Ari. Once he was safely in the building, I uncontrollably sobbed in my car and felt a rage like I had never felt before. As I drove home, I pounded on the steering wheel and screamed and yelled until my throat was raw. Once I was home, I called Brandon, “it’s not good... Ari has full Trisomy 13... what are we going to do?” I aimlessly roamed around the house, numb and in a state of shock until I heard the door open.  Brandon dropped everything at the door and ran up the stairs. I collapsed into his arms and sobbed. We made our way over to the couch and held hands in silent disbelief. Without saying a word, we knew the hardest thing we would have to do is tell Chase. There was no fix. We felt so helpless. 

That night, we made difficult phone calls to both sets of grandparents and barely choked out the words. I know that our parents felt completely helpless at that moment and at times they still do to this day. I have learned people just want to fix the situation, fix us, and make it all better, make us better, especially parents. I don’t blame them. As parents, we are supposed to protect our children. We couldn’t and they couldn’t.  There was nothing that could make this better.

The day eventually came when we had to tell Chase, too. The big brother, who was over the moon excited had to hear that his baby sister was really sick. We planned to tell him at dinner, but that morning he looked particularly sad before school.  I asked him what was bothering him, and why he seemed sad.  He said he was sad for Ari because her heart was sick.  He knew. Without us telling him, he knew. I hugged him and said that her heart was sick. He fell in my lap and hugged me so tight and asked if she would be able to play with him. I didn’t know what to say but reassured him that no matter what, Ari would always be his sister. Always. He grabbed my cheeks and said, “It’s going to be okay, mama… we will see her again.” Looking back, it was as if he knew already way more than any of us.  They already created a bond. My sweet boy and precious baby girl. Their special bond was something no amount of time or space could break.

We told Chase a little bit more about Ari’s diagnosis; her heart was very sick, she might need extra special care that only the hospital could give and she might not get to come home with us. Without hesitation, he explained, "we need to pray!" My heart melted into a puddle and because he saw me tear up, he got down from his chair, climbed onto my lap and once again grabbed my face and said, "I will pray for you, mom, forever! You are the bravest and strongest mama I know!" Chase comforted me, he said encouraging and loving words to me. At that moment he matured, basically aged right in front of us! And that to me, to us, wasn’t fair. Chase was always an amazing kid, but ever since that moment, our eyes were opened exponentially. At just 4 years old he became our real-life superhero. He was so BRAVE and raised the bar for us. Chase continues to bring smiles to our faces and happiness to our hearts.  Especially on the extra difficult days, this is a gift.

As one can imagine, the joy of our pregnancy was overshadowed by fear and a whole list of unknowns. 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. They found one thing “wrong” after another.  But she kept fighting.  All we saw was our beautiful and BRAVE daughter, not a list of medical issues. 

We had 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) For her to come home to our family home. 

With a Trisomy 13 diagnosis, you have to be prepared for what could be minutes to months that your child may be able to survive. We tried to plan ahead as best as we could but looking too far into the future induced anxiety. One moment 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. We would do it all, one moment at a time.

At one particular appointment, our ultrasound technician vulnerably 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 such a similar diagnosis. Boldly she said to 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 our choice. 

Although our medical team seemed to be doing all that they could, we as parents wanted to make sure we were, too, so we decided to get a second opinion. This however confirmed Ari’s diagnosis. It was not the news we wanted to hear, but it affirmed that as Ari’s parents and protectors, we were trying our best with all of the information we had. Initially, we wanted her to have heart surgery, among other medical interventions to extend her life. After meeting with specialists, we knew no surgery or procedure would change her diagnosis. We decided our birth plan was going to be comfort care and wanted nothing more than for Ari to be at peace and loved while she was here. This was no easy choice.  Guilt and shame crept into the space of our decision and every so often still do. I remind myself we did the best we could with what we knew. We did our best.

We continued to have faith, focused on hope, and did all of the necessary things that were in our control to try to keep her growing strong. We continued to foster a bond with memory making, going places to explore, the parks, and the zoo and I continued to work out alongside Brandon.  This time grew our connection as we shared our thoughts and feelings while releasing emotional energy with a healthy outlet. I journaled to Ari, and 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.

We had initially scheduled an induction for April 12 per our doctor’s suggestion as typically Trisomy 13 babies are at greater risk of being born still. Ari would be 37 weeks and 4 days at that point. And to add to the chaotic timeline of things, my younger sister was getting married around Ari’s actual due date. My doctor suggested that it might be in our best interest to “experience the sad first, then experience the happy”. Another thing said to us that stung my soul and I bit my tongue. I didn’t argue with or object to her opinion as I gave her the benefit of the doubt of just trying to help the sequence of events make sense. But none of this made sense. And after a few days, the scheduled induction no longer felt right to us as a family, so we canceled it. We knew what was best for Ari, not our doctor. Both Ari and God would pick her birthday. And that was that.

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 shower her with love! It was our desire to give her exactly what she gave us -- unconditional love. 

On April 12, my water broke. (Notice the timing of the once-scheduled, but canceled induction date). She chose. We were actually already headed to the hospital for a follow-up appointment to check on some fluid found on Ari’s lung during a previous appointment. Instead, we ended up being admitted. When the ultrasound tech said the fluid had cleared, I had a burst of hope that she would survive the stress of labor. With Brandon, my older sister, and a friend in the room to capture photos, Ari flew into my doctor’s arms after only three short pushes. Ari Harper was born at 37 weeks and 5 days at 12:24 am on Thursday, April 13, 2017. Relieved, tears streamed down my face and as she lay on my chest, Brandon rested his forehead on mine. She made it. Goal #1… complete.

Both sets of our parents, Chase, my younger sister, and our pastor came to see our little miracle. Our family was together. I had never felt such peace as I did at 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. 

One common effect of Trisomy 13 is apnea and Ari experienced a few episodes, the first during her bath. Chase and I hovered over Ari as I helped him participate in bathing her and I noticed her color change, she seemed absolutely still. I didn’t want to alarm Chase so I stayed silent in my inner panic and flagged down the nurse who was a few feet away. She gently massaged Ari’s foot which then stimulated her to start breathing. She mentioned it would most likely happen again and several times. Her brain would “forget” to tell her lungs to breathe.

We dressed her in a pastel floral onesie gown and adorned her head with a hand-sewn headband made from my wedding dress fabric and headpiece. Our friend took photographs of each person holding Ari, and there were smiles, laughter, prayers, and tears. Our pastor led us in prayer and initiated Ari’s dedication as well. Slowly the room cleared out as the early morning hours came and went. My parents took Chase home to get some sleep while we stayed awake, not wanting to miss a single second with her. Ari had a few more apnea episodes, but came through each time, which is another reason we stayed awake and fought our eyelids from closing. Brandon eventually rested while I had Ari on my chest for “mommy and me time”.  I read her stories and bible verses and talked about Chase and her dad.  I rubbed her back to stimulate her enough to keep breathing. I sang to her and told her just how proud I was of her, our brave little lion. Brandon woke up and took a turn doing the same as I cleaned up. I am glad he got a chance for some daddy-daughter time, too. 

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 afterward. I carried Ari in as Brandon grabbed all of the bags. We made it home. Another milestone. Goal #3… complete.

As I sat on the couch with Ari, Brandon made some breakfast for us. I am not sure if I was even hungry, but I know we hadn’t eaten anything for the past 24 hours. He was going to call our family to tell them we were home, but before he could do that our doorbell rang. Brandon greeted our palliative hospice team, and a slightly older gentleman and a woman introduced themselves. While Brandon was immersed in the information they were providing and scheduling future visits, I noticed Ari seemed extra still. I tried to stimulate her to breathe and called the hospice team over. The woman sat down next to me to listen to Ari’s heart. She said it was faint, but her heartbeat was there. Something didn’t feel right, it wasn’t like the other episodes. Her tiny body felt lighter. I told her to check again and within that 5-second exchange of words, she listened again and there was no heartbeat. 

Just 30 minutes after she met goal #3, Ari took her final breath and passed away after 9 hours and 51 minutes of life. Ari was now home in her forever home. Brandon whisked her out of my arms, buried his face in her body, and disappeared down the hall. I found out later that he took her into Chase’s room to tell her all about her big brother, the things he loved to do, to show her the artwork hanging on his walls, and spend some time with her. Here lies some regret I hold to this day, Brandon took such good care of us that once we were home he never held Ari alive.

The hospice workers, absolute strangers we just met no more than 15 minutes ago, sat with me and rubbed my back and knees as I sobbed and shook uncontrollably. I was so grateful that they were there. Within a few minutes, I managed to pull myself together to make the dreaded phone calls to my parents who had Chase, my in-laws, and sisters. The rest is kind of a fog as I went to Brandon to say I phoned our families.  At some point, I was back on the couch with Ari in my arms and my husband once again took care of speaking to the hospice team about the next steps. For this gesture and Brandon’s ability to take care of all of that, I am forever grateful.

Within 20 minutes, Chase came up the stairs. I saw his sweet and innocent little face peek around the corner and he slowly made his way over. As he sat down next to me and Ari, I wrapped my arm around him and kissed his forehead. “Ari is in heaven, sweetie. She died and this is just her body now.” Who knows what Chase comprehended or understood at that moment? I barely even grasped what I said. Another piece of me died at that moment. 

Brandon sat with us and Chase crawled onto his lap. All of us huddled together on the couch, all four of us were together again, but this time it was different. We knew Ari’s soul was looking down on us, perfect, whole, and complete, but so much heartache and pain engulfed us, too.

Our house started to fill with family and our pastor who prayed over Ari’s body and our family. Most of them took turns to hold her body, said their hellos and goodbyes, and sat with us in this living nightmare. In their discomfort, they stayed with us, something we hold onto with such gratitude. Eventually, Chase wanted to hold his sister. With a big smile on his face, we were able to get a few final photos of the two of them together. Not at all what we envisioned or what we planned, but grateful to have these priceless photos to help him and us remember and help our hearts heal.

We spent as much time as possible with her, but as the hours passed by, her body and color started to change. We gave everyone a chance to hold her one more time before we took a moment alone in private to pray and memorize every single thing we could about Ari. We kissed every inch of her body, told her that it wasn't enough time and how much we wish she could have stayed. I kept reminding myself that her body was not her and that her soul was in Heaven in the arms of Jesus. I was extremely jealous of Jesus at that moment and experienced that same jealousy several more times.

The time came for us to let go. I couldn't do it.  Wrapped in a hand-crocheted prayer blanket, Ari’s body was moved from her father’s arms over to the arms of the funeral home director. I gasped for air and was nauseated as I hung onto Brandon for dear life. The woman holding Ari’s body was crying, too. We knew she would handle our daughter's body with the utmost care. As she turned and walked in the opposite direction, a piece of my shattered heart went out the door with her.

We watched from the window as they pulled away. Immediately, my concerns turned to Chase. I just wanted to hold my other baby. He was hiding behind a large cardboard box in our family room which he was coloring on with markers and playing in as a racecar driver earlier with his cousins. I let go of Brandon and went to go sit with him. He just curled into my lap. I explained in the best way I could where the lady took Ari and why. But explaining cremation to him was not in my capacity. And I didn’t know if it ever would be. 

Slowly the house emptied of guests. Some offered to stay, but we just wanted some privacy and time alone to process what just happened over the last 24 hours. From hospital admittance to the birth of our baby girl and getting her home to instantly saying goodbye. “Did all of this really just happen?” Sleep deprivation kicked in, but falling asleep felt ‘wrong’ and was hard to do. Hunger pains, yet nausea set in so I had no desire to eat. My body ached and produced involuntary, exorcism-like tantrums. I kicked and punched the floor, my muscles beyond tense. I burrowed myself into a pool of my own snot and tears as Chase fell asleep on the floor next to me. Brandon laid on the couch just above us with his hand clenching mine. Our new reality was surviving the aftermath of the death of our child.  Ari was here and now she’s gone.  It was not nearly enough time. 

As night approached, we all fell asleep in our bed. Sometime later, I woke up Brandon was not in bed anymore. I found him on the couch in the exact place where I held Ari just hours ago. Holding her headband at his chest, his body trembled. Another awful part of grief, watching someone you love hurt as much as you. I sat on the floor at his feet and as I hugged his legs a plethora of all the things he wouldn’t get to experience with his daughter filled my head. My heart, already shattered, broke into even tinier and unrecognizable pieces. I laid my head on his knees and I knew there was nothing I could do but just be there, to acknowledge his pain that I could not take away. It was a broken sleep the rest of the night. We were exhausted and this was only day one.

A heavy fog filled our minds and we were just going through the motions without comprehension. You just do what you have to do, mindlessly. The next day we actually went to Costco. We were out of toilet paper, a necessity. It was such a strange and surreal experience, confused that life literally continues on for others and technically for us, yet our world was just obliterated and abruptly stopped, but we needed toilet paper. 

Memorial plans were arranged thanks to my mom and mother-in-law.  We collectively decided to keep it small and to immediate family only. An intimate setting allowed us to fully remember every detail of her life. We chose the music and bible verses that brought us some peace and reminded us of her BRAVE journey to meet us. I wrote and read her eulogy. As her mother, I was the luckiest 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 that 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 individual wishes; to hear their loved one’s name and to be remembered.

The piece of grief I often struggle with the most is Chase missing out on life with Ari here. He is triggered when he sees friends with their siblings or when another baby is welcomed into the world. 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. As an adult, this is hard to process, but I can’t imagine what goes on in a child’s mind and heart as they process loss.  There have been and always will be lots of conversations that we never imagined we would have with Chase but are now a reality. Though certainly unfair, it was 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 Chase and Ari. A bond that reaches far beyond the boundaries of this life. Chase will remember Ari, I don't worry about that. He talks about her daily, snuggles with her blanket on occasion, and prays for her.  He draws and paints pictures of her, and dreams about her. He yells, "Hi, Ari! I miss you!" up towards the sky and waves to her, and blows her kisses.

I think about Ari all of the time, but it isn’t all-consuming pain anymore. I am able to hold space for more of the beauty of her life and memories, as well as the pain and tragedy.  I miss her terribly. Sometimes it's emptiness and a feeling of guilt that I couldn't help or save her and sometimes it's an angry and frustrated wave of emotion... kicking in a childlike tantrum as tears stream down my face. Yet, other times, and most often, I smile as I remember everything I felt in the moments captured in photos. But I miss her smell, the touch of her skin, her quiet noises, tiny fingers and toes, dainty lips, calm breath, kissable cheeks, and jet black eyes, and just her. I miss being able to watch Brandon stroke her nose with his finger, look into her eyes with pride, and kiss her forehead to show just how much he wanted to protect her. I miss getting to witness the physical interaction between our children. They had an instant bond that will be cherished forever, a bond most siblings either never achieve or take for granted. Chase loves Ari and I know his smile will never fade when it comes to his love for her. But I miss all of the “what could have been”.

How I wish the outcome of Ari's life was different and that we could be holding her in our arms at this very moment. Though we could see the train coming for miles, the moment she took her last breath, the moment it hit, it tore our hearts apart. But we still would not have chosen differently. We chose to carry her to term, to give her life. Trisomy 13 limited her life here, but it never will be the definition of Ari. What does define our amazing little girl is courage, strength, beauty, bravery, and unconditional love. She has gifted us with these things that will not be forgotten, but rather shared with as many people as possible. Ari will always be here and as long as we keep talking about her, sharing her life with others, we find our way as a family to live our now different-than-planned life, our after-Ari life. When I think of the precious hours we had with Ari, I smile. The mention of her name brings great pride and joy! 

One thing I find myself experiencing is the desire to be in two places at once. To be on the other side of the stars holding my daughter, where there will be no more tears, anxiety, or worry, no more jealousy, bitterness, pain, or heartache. But then I am fully aware that I am needed here, for Brandon, for Chase, and other families who have experienced child loss. I was given this divine assignment, chosen to be Ari’s mom, and advocate for grief. Brandon, my loving husband needs as much support and love navigating this journey as I do. He needs me. And Chase, who is our everything, deserves all the happiness one little heart can hold. He needs me, too.

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 in 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, but never ever are we moving on. Losing Ari hurts, it always will. And grief is here to stay. Yet I now understand that where there is grief, there was first great love. Love and grief are interconnected, you can't have one without the other. We simply cannot heal or recover from our grief, but we can choose to learn from our grief, adjust, and try again. We discover a new layer of ourselves. I am a continuous work in progress, reconstructing and rediscovering my life in the ‘after’. There are moments when this processing feels impossible, but I am still here, we are all still here. It takes work. It takes being an active member in our healing. It takes a constant reminder that life threw a really hard challenge our way yet we have a choice in what we do with it. No, we didn’t choose to have to be this strong, but my goodness we are resilient. 

This pain that comes with losing a loved one is devastating. I can see my grief as a gift only now, and after putting in the hard grief work. Grief is our connection to our people and I believe one of the greatest gifts we can give our loved ones is to live our lives fully, no matter how daunting or hard it may seem. It is possible, but growth is optional. Choose growth. Looking back, I could not see this. Some days I can’t believe it has been almost 6 years, while other days it seems like it was just yesterday. I would give it all back, all that I have learned on this journey, just to see her again. 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 the feeling that way. To go on and continue to honor our lives, we honor Ari and that is also a gift.