I have been thinking about identity recently. My identity. I have been entering into some new social situations that I would have felt completely comfortable in years ago. I now find myself averting eye contact and waiting for the escape. Small talk is not my friend. If the kids are with me, they become the visual expression of who I am. Because even though I know I can work to make things different, my identity has morphed into theirs. I am caretaker, therapist, nurse, insurance manager, chef, bathroom attendant, laundress, etc. I spend most of my time making sure they are well cared for and loved. I am realizing that I have been solely identifying myself as the mother of Waverly & Oliver who have Sanfilippo Syndrome. And while I love being their mother and caring for their every need, I have to cultivate me.
I am in the early stages of figuring out what this will look like. I have a very part time job as a patient representative on a board. It has been wildly fulfilling to finally have something that is totally and completely mine. However, I am mindful of the fact that I would not be able to have this position without the experience of parenting two children with a rare disease. I am going to delve into the world of a small group soon to get to know a few other women and do life together.
One of my fears is that when Waverly & Oliver pass away, I will not only have lost my children but also myself. I want to have things, no matter how small, to count on. People to stand beside me who know me. Opportunities to step back into the real world even if in short bursts. I have no idea what grieving the loss of both of my kids will look like. And I don't think there is any way to even partially prepare myself for it. Yet I want to do what I can to ensure that I am not gone along with them.