It's Complicated: A Mom's Diary of Life with a VEO-IBD Kid

The blink of an eye – that’s all it takes to turn a mundane Monday night into a parents’ worst nightmare. One minute Connor was completely fine being wild and crazy before bed with his siblings, and the next I’m woken up out of a dead sleep at 11:15 p.m. to him shaking with a high fever and mumbling nonsense in his sleep. At first we just assumed it was the fever “talking”, but after a very long and uncomfortable night that turned into the wee hours of the morning, we knew something was very very wrong, and we needed to get our sweet boy some medical attention as soon as possible. Typically whenever Connor needs immediate medical attention we make the two hour drive to CHOP. However that wasn’t an option this time because he was very unstable. The plan put in place with his GI specialist in this type of situation is for us to take Connor to a local emergency room where he can receive immediate care, and CHOP will work with that emergency department to get him transported as soon as pos...

WARNING: Long-winded explanation of a short story. I am a firm believer that God puts people in our path for a reason. Over the course of the past couple of years, He has REALLY been stacking our path with people who have lifted us up and given us hope during our hardest times. One of our favorites (whom we’ve never actually met in person yet) is Adam. Before I get into why Adam is so special to us I’ll give you a little background. Almost 10 years ago my cousin Max started dating his now fiancé, Emma. She immediately fit into our family with her bubbly upbeat personality. A beacon of light, it’s no surprise that she attracts the same types of friends. One friend/college roommate in particular played a huge role in connecting us with Adam. The friend, better known as Quinn, is one of the most cheerful outgoing people around. On more than one occasion, Emma and Quinn were talking about our kids; more specifically Connor and his diagnosis/treatment at the time. Emma shared with Quin...