August 26, 2018
Hey there. It's been awhile. Almost four years, to be exact.
I've wanted to write you for some time but I couldn't bring myself to do it until now. It felt awkward to just resume writing after so much time away without addressing the elephant in the room.
Four years ago today, my daughter Olivia was born. It should have been a happy occasion, only she wasn't due until mid-December.
My wife, Allie, woke up in the middle of the night a few nights earlier. She was bleeding. We rushed to the hospital. It turned out that she had a placental abruption. Olivia had been gestating for just under 24 weeks.
At 24 weeks to the day, Olivia was delivered via c-section. She was just 1 lb. 4 oz., but she was alive. She was rushed to the NICU.
The next nine and a half weeks were hell.
Olivia struggled with a lot of issues related to her prematurity which required several surgeries. On top of that, we found out my wife and I are carriers for an extremely rare condition known as Congenital Amegakaryocytic Thrombocytopenia (CAMT), which was passed onto Olivia. This condition resulted in extremely low platelet count and required Olivia to receive regular blood transfusions. It made an already tenuous situation exponentially more complicated.
Ultimately it was too much for Olivia. I held her in my arms as she passed away on October 31, 2014.
Sarah Drasner recently wrote a very touching article, Mourning as a Developer, that really resonated with me. After suffering the loss of two friends, she found solace in her work as a web developer.
For me, it was extremely difficult to focus on work. Instead, I found refuge in video games. I've always enjoyed video games but the compelling gameplay loops and monotonous grind of games like Destiny and XCOM helped keep my mind off of Olivia, even if just for a few hours.
Before Olivia passed away, I signed up for Extra Life, an annual event where people play video games for 24 hours to raise money for their local children's hospital. I've been doing it every year since.
In four years — thanks to the generosity of family, friends, co-workers, and complete strangers — I've raised close to $9,000 for Lurie Children's Hospital, where Olivia was treated. With the help of my friends Bert and Al, who have joined "Team Olivia," we've raised over $10,000.
I'm really proud to be able to do something that I enjoy while giving back and, in doing so, honoring Olivia's memory.
Allie and I have spent the last four years trying to have another child. We've tried PGD, egg donors and other avenues in hopes of avoiding passing on the disorder to our next child. It's been a long road filled with a lot of disappointment, but we're still trying and remain hopeful.
I'll be participating in Extra Life for the fifth year in a row on November 3rd, 2018. If you'd like to donate, you can do so here.
I've redesigned the website in hopes that it will motivate me to write more often. With the shit show that is Twitter (and America in general, currently), a lot of people I follow are getting back into blogging, and it's inspired me to get back into it as well.
You can look forward to reading my thoughts on all sorts of dumb shit soon.