Monday, June 11, 2012
One of the difficult issues that comes up in raising a child with a rare disease is how to relate with other families who have a child with the same rare disease. There is an online forum that I joined immediately upon diagnosis. And as I found my way around facebook, I connected with other families and joined support groups. One thing I have learned after 4 years in the Sanfilippo world, is that simply sharing a common diagnosis does not a friend make. We may be able to talk shop regarding the disease, but each family chooses their own path of dealing with it. Some families retreat, others immerse themselves, some choose to seek alternative treatments and therapies, while others decide to take a natural approach and treat symptoms as they arise. I have found those few families who I connect with on a level other than simply Sanfilippo. They are my go-to friends when I need advice or simply need to vent. Without their friendship, I would be lost. I recently realized just how horrible it will be when the children of these dear friends pass away. (Morbid thought, I know.) I am beginning to not only worry about my own children, but also these beautiful children who have become so important to our family. Obviously, I am feeling incredible sadness and as I have wallowed in Waverly & Oliver's future, I was reminded that I have dear friends who are also going to lose their children much too soon. I sometimes forget that our reality is incredibly abnormal and atypical.