The reality that Tia is just over 2 years away from heading to college is crazy. How is this even possible?! The mental count down is ON. How many holidays do we have left together? How many spring breaks all together as a family? How many nights do I get to tuck her in?
As we walked around UNC’s campus, the excitement was building. It was adorable hearing the kids chit-chat about their futures. Tia, Hudson, Ava and Georgia made plans to go to the same school, and talked about all of the things they would do when they got there. UNC was their pick which naturally made sense at the time. We had just come from the most insane game at the Dean Dome – an overtime win vs Miami with amazing floor seats. Ava was on the jumbo-tron screen 3x in her neon pink jacket. It doesn’t get better than that!
I quietly walked alongside the kids thinking about one thing- Tia’s health and well-being. I’m programmed to think that way. So much has been invested in keeping her as healthy as possible. The idea of a new place, new people, new food and no PKU management structure is frightening.
How will she manage a chronic disease and going to school away from home at the same time?
Staying on diet is tougher than most people can understand. Imagine getting most of your calories from an unpalatable drink, and then eating sparse and carefully weighed fruits and vegetables, and specially prepared low protein foods for the rest of your meal.
PKU is isolating, it’s difficult, it makes you feel different, hungry, frustrated and angry. These are emotions that Tia feels sometimes. She will tell you that these emotions don’t consume her, and that PKU does not define her. Tia’s positivity and resilienceblow me away! I can learn from it, we all can.
To that end, Kai and I promised Tia that PKU would not hold her back in life. We want her to chase her dreams, and if her dream school is hours away by car or plane, we will make it work. We will make sure she has the foods and formula that she needs. And we will make sure that she can get her blood draws as needed too.
Suddenly, I was reminded of why I chose to do Norway. The importance of our goal to fund research and a cure was staring me in the face. We need a cure so Tia can live her best life possible- feel healthy, feel joy, thrive, succeed, and focus on chasing her dreams.