Women Crush Wednesday honors all the women, mothers, care workers and people with disabilities often acutely effected by having a disability, rare disease or a child with a disability or rare disease.
In this piece, I would like to honor and pay tribute to all the mothers who have a child with a rare disease. As you know if you are reading this blog, there are many forums, groups and support systems for mothers, fathers and caregivers of children with many more common, albeit difficult and challenging conditions and diseases. Today our #wcw is all mothers who have children with rare diseases without ostensible, built-in support and mothers who have to educate everyone about the nature and breadth of the disease, in addition to zealous advocacy toward accommodation.
In perusing the list of rare diseases and thinking of clients and friends who have either been afflicted or had children who have been afflicted, I want to speak to their amazing courage, patience and fortitude. The road to diagnosis is extraordinary difficult. It is an often-quoted phrase from medical school that when you hear hooves, you should think horses and not zebras. In other words, it is far more likely that it is a common ailment presenting in uncommon ways as opposed to an uncommon disease. For these mothers, their hoof beats were zebras and they have fought valiantly for an appropriate diagnosis. I have heard of very young children being diagnosed with 10 or more diseases before the correct diagnosis of a rare disease.
When the diagnosis is finalized, you must immerse yourself in the rare disease. It is hard enough to have to zealously advocate for a student with special needs without being bombarded with questions as to the nature of the student’s illness or question. Although most parents and legal guardians of students with any sort of disease or condition get a lot of questioning, (some more appropriate than others) the amount of questioning a rare disease mother gets before she gets empathy or help is remarkable.
Today we honor and “crush” on mothers with students with special needs, as you are our beacons, our best educators and some of our most strong, graceful advocates. You have to be experts on some of the most rare diseases in the world and also represent your sick or recovering child’s interest. For that reason, we honor you and stand with you. We are your virtual support group and you are not alone.