Looked Good On Paper

I was born and raised in Buenos Aires, Argentina. At the age of 20, I packed my things, hopped on a plane and landed in Utah. I started working at a sandwich place where a coworker introduced me to her brother in law. His name was Ben. We dated on and off for 3 years. One day in May of 2004 I took a pregnancy test and holy shit!! I was pregnant.

We got married in a tiny chapel in Las Vegas, in July. In January 1st, 2005, Conner Daniel was born. Right on his due date, in less than 2 hours.

But everything changed the next day. The part where Life looks good on paper stops.

He was sick. Very sick. He needed a liver transplant. Soon. He was transferred (as in they put him on a gurney, which went inside a helicopter and then he flew away, at the ripe age of  6 days) to a children’s hospital in Salt Lake City. It became our home. When he was 7 weeks old, he became the youngest and smallest to receive a liver transplant at that hospital. We thought that this new liver would fix him, and for a while it did. We took him home, we started a new kind of life. One with oxygen, therapists, medicines, doctor appointments every week, feeding tubes. To us it was normal.

But at the same time that the liver did great, other parts of his body started to fail. And so doctors kept running test after test, trying to find out what was causing all this.

On September 15, 2006, Dallas Benjamin was born. Right on his due date, in about 6 hours. I was terrified that he too, would get very sick the next day, that he too, would fly away in a helicopter, that he too, would need a new liver. But he was fine, he was as healthy as they come and I couldn’t be happier.

On September 21st, Conner was diagnosed. That thing had a name. Hepato Cerebral DNA Depletion Syndrome with Mutations in the DGUOK Gene. That thing also had no cure or treatment. In other words, we were about to lose him. My son, my oldest, my first baby,  was going to leave me. I felt like dying myself at that moment.

On November 3rd, someone burned our house down, while Ben was inside. He got out of the house but he suffered 2nd and 3rd degree burns on 50% of his body. He spent 3 weeks in the Burn Unit, his hands were grafted. Conner was in the hospital next door. Dallas, who was only 3 weeks old, was cared for family members every few days. Those were some of the darkest moments of my life.

Ben recovered, we started to rebuild our life little by little, we moved to Salt Lake to be closer to Conner’s hospital. Then everything got even darker.

On December 21st, 2006, our sweet, strong, smiley Conner went to sleep and never woke up.

What a peaceful way to slip out of this world! After suffering for almost 2 years, I couldn’t have asked for a better way. But how do you keep going? For a few days I thought there was no way to survive this kind of loss. That I would never smile again, that I would cry for weeks, but I knew that I had to keep going, I had a baby and a husband to take care of. And slowly I did.

Ben rebuilt the house and we sold it. We needed a fresh start, a new life, somewhere else. So we packed our things and moved to San Francisco. And here we are. Learning how to live after loss and major trauma. Going to school, work, camping, learning how to sew, how to cook, living, I guess.

This is what my blog is about. About me, about my life.

Tami