On Being an Advocate
The week before World Rare Disease Day is chaotic, it is also a reminder of why I became an advocate. Of course, the short answer is that my children have a rare disease. I had already become Olivia’s advocate while we traveled from that one nanosecond that you know something is not right with your child until our ever-changing present. At first, we are able to brush aside our concerns, placated by doctors, friends and family. Then we can no longer avoid the tearing at our heart because our child is not well.
I find that helping others in a similar situation gives me an outlet for my grief, a sense of knowing, and a feeling that if l looked in another mother’s eyes I would see the depths of my fears reflected there and know I was not alone. Advocacy also gives me a sense of control over something I feel controls me much of the time.
After about six months of advocating for rare, it became like second nature. I rarely dislike my work, but it will push you to your limits. There are no days off. There are no nights that you don’t fall asleep reading medical articles and anything and everything rare. Sometimes, I don’t like the work because I see too much. I often feel ashamed because the country I live in and love sees my child as less, or worse doesn’t see them at all. Maybe one day they will see us and I will be out of a job. Until then, we have a lot of work to do.