Notes from a Zebra Mom

We have spent much time in the hospital over the years. We have learned to live with a zebra life, which in no way resembles the lives of families with “normal” children. Those of you who are in the zebra world know exactly what I mean: Nothing is what you would expect. Everything is a complication, a potential complication, or a crisis. The details differ from disease to disease, condition to condition, but one thing remains the same: There is no “normal” day for us. 

We are all working so hard to help our kids survive another day, week, month, year. Which means we have to find the best doctors, the best medical care, raise money for research, and try to network with the other parents who have kids with the same disease.

But then there is our real job: helping our children be “more than a disease” to themselves and to the outside world, and standing between the people who may say ignorant/cruel/uninformed things. Sometimes even a doctor at a hospital can forget there is a person attached to the disease. (“Hey, everyone come in and see this really BIG LIVER.”)

We have to try to shield them and, at the same time, empower them as much as we can to have as full a life experience as possible. 

Undiagnosed and Rare diseases touch all of our lives, and it is our collective responsibility to fight for more funding for research, to commit ourselves to patient registries, and above all, to encourage our children to live as normal lives as possible. That’s the job of the parent ultimately, and for parents like us it’s always a part of our lives because every day is a Undiagoned/ Rare disease day.  PLEASE HELP us in our MISSION!  Check out SWAN (Syndromes Without A NAME)www.undiagnosed-usa.org