From hopeless to hopeful.

Until last Christmas my family has been pretty lucky healthwise. We’ve barely had more than a cold but last fall our 16-year-old daughter started having frequent stomach pain, unexplainable exhaustion and fatigue and food started to make her “sick”. Our first pediatrician shrugged it off as “teenage girl issues”. When she started losing weight and feeling lightheaded, I sought a second opinion.

Every parents worst nightmare was now our reality, was it cancer? was it worse? is it fatal? The unknown was probably the darkest time of my life as a mom. We confirmed the diagnosis right around Christmas time. Having a name for her mystery illness seemed very hopeful, if it has a name, it can be treated, right? I could not have been more wrong, part of me wishes that we would’ve gotten a diagnosis of cancer because cancer has a treatment and a plan. Crohn’s disease is so unpredictable.

We barely got six months into Remicade before it failed us, now she’s on a cocktail of Entyvio and methotrexate. Crohn’s has completely changed every bit of our family, our schedule, our plans, our fly by the seat of our pants lifestyle. Eating used to be one of my family’s most cherished ways to celebrate friends and family together. It broke my heart this Thanksgiving to see my daughter in the middle of a nasty flare-up, struggling to eat gluten-free veggie chips because everything else sent her doubled over in pain. Crohn's is lonely, cruel, humiliating and yet, a warrior has begun to emerge from my shy wallflower. I’m her advocate and she is my champion. Finding a way to smile and carry on because she refuses to let Crohn's consume her.