November 23, 2012 My husband, Rod and my life changed when we received a blue + sign on a pregnancy test. I don’t think anything could have prepped us for the journey we were starting on.
March 7, 2012. I was counting down to this day from the first visit to the doctor about the baby. It was the day we would receive our ultrasound and find out if we were having a boy or a girl. The moment the image of the baby’s face flashed on the screen, I was in love in a whole new way. I could see everything about this miracle–the jawline, the spine, the eye sockets, nose, fingers and toes–and it all was perfect. The nurse struggled to find “the parts” because this baby is a FIRECRACKER! Oh my, the baby was all over, flipping and whaling its arms and legs all around, but finally we saw. “It’s a girl” she said nonchalantly and continued rolling over my belly for the next image. Rod’s face was priceless at this moment, “What?!?” he stammered shocked that the baby wasn’t the boy he was expecting. I don’t remember any emotion or thought except “she is so beautiful, so precious!” I, surely like every other mother seeing her child for the first time, doesn’t want the moments lying there to end. We continued into an examination room and my doctor walked in more somber that usual. “We are concerned about your baby’s heart. The nurse can’t get a good picture of all four chambers”. I went numb–how could this be? My baby is totally healthy, totally perfect little ball of energy–NO WAY could she have any little thing wrong with her. We left with a bittersweet halo anxious for the next day for a more in-depth ultrasound.
March 8. 8:30 we arrived at the hospital hopeful that the pictures from the day before were a product of the baby’s spunk. Again, she was full of life, her little heartbeat was strong and everything about her was perfect. She put on another show, and our hearts grew more in love with her. As the doctor turned off the screen and handed us a strip of pictures she said, “Your baby has a cognitive heart defect called hypoplastic left heart syndrome.” My heart sank. I felt like I just had the wind knocked out of me–how could this be? is this really happening? Can this be really happening? With tears in my eyes and slipping down my face, I looked back at the doctor as she tried to explain to Rod and me what was happening and what our next steps were. We would have to go to Children’s Hospital to have a heart echo. They will answer all the questions, blah,blah,blah. What other question is there than why is this happening? What will make it go away? Needless to say, we were happy to leave that room and allow the diagnosis to sink in.
Rod and I got in the car and wept. I never have known what sorrow is, but in that moment, I knew I had my first glimpse of the depth of emotional pain that comes from sorrowing. I was helpless. I couldn’t give my daughter my heart, I couldn’t reach into my womb and pump her heart up. There is no power food that is going to help her, there is no exercise I could do to better place her to grow there was nothing I could do.
The rest of the day seemed like an eternity as we called family and friends all wondering how the visit went. Every time we got on the phone with someone is was like tearing off a band-aid. It hurt. It stung. I went through every emotion imaginable, I was jealous of all the moms I know having healthy babies, I was annoyed that mine was chosen for this defect that affects only 4 out of every 10,000 births. But as the day lingered on and the tears began to dry up, I felt a peace. A peace that I know only God can give. I was laying in bed SOBBING, shaking, gasping for air and it hit me–GOD IS HERE. God is here in this moment. God is here in this child. God is here in these emotions. God is going to guide us through this journey. God has chosen our daughter, who we then named Vivian, God has chosen Rod and I, God has chosen our family to learn, live and love through this.
At the time, my sister, Clare was a junior in high school and part of her curriculum was to create a Capstone Service Project. With the help of 1Heart2Souls, she organized a 5K, Vivian’s Victory, to raise money for Rod and I so we were able to be with Vivian in the hospital once she was born. The love and support that surrounded us from the beginning was indescribable. Viv had a way of connecting people, a trait she still has.
July 24, 2012, I held my sweet, beautiful, Vivian, for the first time. Little did I know in 59 short days later, on September 21, I would hold her for my last.
3 days after Vivi was born, a geneticist came into our room and told us Vivi actually had a chromosomal defect called Turner’s Syndrome. The next few days were filled with Care Conferences and Meetings and Tests and the news we received was crazy–the doctors nor their colleagues from other hospitals had seen a “live” baby with all the complications she had. It was in these moments I was reminded that the medical staff was “practicing medicine”…and as a parent, that’s a hard pill to swallow.
Vivi gave life her all–and in turn, gave me a life I never imagined. Through the smiles and tears, I wouldn’t trade for the world.
During our 59 day hospital stay, Rod and I continued to receive endless support from family and friends. Meals every night, someone to stay with Vivi once a week so we could rejuvenate, and always a shoulder for us to cry on.
Because of this, we were able to be fully present for Viv, learning her care, loving her for a lifetime in those 59 days. Quickly we realized that our presence was the exception. It wasn’t that other parents didn’t want to be next to their child, the demands life required of them outside the hospital just didn’t stop.
I left the hospital devastated that I had empty arms, but my heart was full of need to do something.
I couldn’t unsee parents who were anxious and overwhelmed. How would they continue care without medical equipment at home? How would they afford additional transportation costs for follow up appointments? How would they be able to care for their other children while medically caring for their other child?
The inception of Vivian’s Victory was out of love, but most importantly out of necessity. Since our inception in 2014 we have impacted over 4,000 families who otherwise would have been without support. Initially, Vivian’s Victory strived to bridge a financial gap for families. After 4 years of following this model, Angela and I began to realize as a “business” it was unsustainable and we searched for answers. When following up with families, they told us that because of the help VV gave them, they were able to spend more time with their child, while also decreasing their stress. The common thread in each of their stories was not their child’s diagnosis or their journey, but that they needed more of us, and they needed to meet us closer to their child’s diagnosis.
There are over 32,000 children that experience a hospital stay in the Cincinnati Tri-State Area each year…it’s the medical team’s responsibility to care for the child, we often forget there are also 32,000 families that need to be supported and cared for too.
The Present: In response to this need, Vivian’s Victory has created a new program, reVIV. The purpose of reVIV is to provide personalized practical and emotional care for families in order to better serve and walk beside them when their child is diagnosed with a life-limiting or life-altering illness. We focus our care in four key levels of support: Family and Sibling, Hospital, Home and Bereavement. Our method and model are influenced by our relationship with the Rainbow Trust Children’s Charity in the United Kingdom.
So, how does this work? At reVIV, we work in conjunction with the child’s care team to meet the family as close to the child’s diagnosis as possible. At our first meeting with a family, we ask them, “If we had a magic wand, what are the three things you would change?” Upon identifying these three things, we develop a plan with the family on how to concretely, and often creatively provide solutions to those needs. We then have significantly trained and committed volunteers work with the families to fulfill this plan of care. ‘Each plan is re-evaluated and modified after 6 months. we promise to be a part of the family’s life until they feel confident without the support reVIV provides. (These self-identified needs help the reVIV Volunteer Family Support Workers to provide personalized practical and emotional support that focuses on five key areas; quality of life, quality of time, stability and confidence, managing stress, and economic wellbeing.)Our non- clinical case management method of care allows for reVIV to be the most consistent support for the family while navigating their new normal. When speaking to care providers, the response to reVIV has been overwhelming. We hear “you are filling a void that no one else is filling,” from social workers who have patients with a myriad of diagnoses from cancer to genetic conditions and everything in between. We hear, “I can think of several families who need you right now,” from Starshine Hospice workers. But most of all and hardest to hear, are from families like Jane’s,who recently sent us an email stating: “ I could have definitely used your help in 2012 when my son was diagnosed… I remember the details of that day and the months to follow and how overwhelmed our family was…where were you 7 years ago?
It has been seven years since my Vivi has died, and every year in our Tri-State since there are thousands of families whose child receives a devastating diagnosis. These families need us… they need YOU.
Thank you for being a part of our journey 🙂