This is what I know- living with, and parenting a child with a medical condition isn’t easy. But it’s not that different from parenting typical kids either. You stay positive, and patient. You encourage, offer hope, show them how to make friends, share excitement, dry tears, color with your kids, soothe their fears away and at the end of the day you make sure they know they are loved, cherished and protected. You live your life with the right priorities, so that you have no regrets. You do lots of laundry, kiss boo-boo’s and you try not to think about the future in detail.

 Both of my girls have a metabolic disease that is defined as “ progressive”, yet that word goes against everything I believe. You can’t teach others to be positive, to dwell on accomplishments, to have fun, to live on the lighter side, to let my daughters just be kids- with that word hanging over you. It’s an acknowledgement that things will get worse. Using that word is an admission of fear.

Because there is no treatment, the key to managing their health is to prevent the progression of the disease, keeping them as healthy as possible. By preventing fatigue, by keeping them out of extreme temperatures, by reducing their exposure to virus and infections, … By managing their individual symptoms like epilepsy , and kidney disease. Most of the year I am in management mode, safeguarding, nurturing and not focusing on future prognosis.

We travel to the Cleveland Clinic, once or twice a year. There we see one of the few specialists for mitochondrial disease. A neurologist who has seen so many patients over the years- that he has developed the unique ability to offer insight to the future.

In previous years, on previous trips I would ask “ Will Zoe ever walk, will she ever talk?” He gently encouraged me to hope, to try but most of all to be patient. The course of this disease is different with every patient. When we have health issues, he often knows what comes next. Yet still, there is no standard, no road map. We have accepted this. So instead we just steer around the biggest obstacles, accepting the fact that sometimes you just drive, even when you don’t  know where you are going.