I remember the first couple of weeks and months after saying goodbye to my precious Jonah at 30 weeks gestation due to a heart condition as extremely difficult and filled with so many ups and downs, I felt like a marionette doll living someone else’s life, because there’s no way that much sadness could be…
In 2012, I lost my 20-week old twin boys, Preston and Julian, after a week in the hospital fighting for the right to keep my pregnancy after my water had broken. My story went viral because of the way I was treated during that time, and I faced both enormous support and backlash online. My sons were born in the middle of a night, in the bathroom, and I left a day later wishing I’d died with them.
Over the next year, my husband and I faced a failed adoption after receiving the name and pictures of a little boy in South Korea. I became pregnant at the end of 2012 and worked hard in therapy to get to a place where I wasn’t terrified of both loss and the hospital every day of those 9 months.
My son Kaden was born full term in the summer of 2013. He joined his older sister Bella who looked forward to bringing a sibling home. After a short stay in the NICU, we were ready to take him home, when the cardiologist raced up to us and said they’d heard a murmur on his heart that turned out to be acute cardiomyopathy. He was incubated and flight for lifed hundreds of miles away. Placed on a heart transplant list, he had dozens of tests run to find what might have caused this condition in a seemingly healthy child with no family history of this. We later found that medications I’d taken to prevent preterm labor had activated a still very unknown, rare condition called ciHHV-6 and attacked his heart. He was taken off the transplant list and died in my arms on his 3-week-birthday.
Over the next few years, we faced another failed adoption and consequences of the trauma my husband and I both had endured both in loss and him in war. In 2015, we realized I was unexpectedly pregnant, a complete shock. I refused all medications as I worked closely with the ciHHV-6 organization and doctors around the world interested in our case. My second daughter was born, overdue and perfect, at the end of 2015 and turned 2 this past year.
During this time, I leaned on the loss community heavily for my healing and to feel sane in the midst of so much anger and grief I had to deal with over and over. Still Standing became a refuge for me; both to write on and to find comfort in reading.
I became the Editor at the end of 2017, and my heart feels as if it found a home online. To be able to help others share their stories, to watch these men and women share and heal and grow as they write and connect – that is something that gives me a purpose. There will never be a “reason” my sons died, but there can be a reason I am still alive.
A reason that I too, am Still Standing.
Editor of Still Standing