It will soon be ten years since we received the diagnosis. For a quarter of my life, Sanfilippo Syndrome has been known. And for over three-quarters of my parenting life, Sanfilippo has played a major role in the way I mother. I have worn different labels throughout the years - mom to children with a hearing impairment, mom to children with intellectual disabilities, mom to medically fragile children, mom to child on hospice, grieving mom, and mom anticipating more grief.
I have long sought to find my identity apart from those roles. I am learning that it is impossible to separate them. Diagnosis was much more than a single event. It wasn't simply something that happened to our family. It changed me in that moment and has had a life long impact. I view the world through a new lens.
I was at a retreat this weekend with women from my church. I tend to become quiet with new people, because I worry my story will stop the conversation. It can be quite overwhelming and I worry people will be put off the heaviness. I also fear people will be hesitant to share their own hurt because it doesn't "measure up". The story of a woman who lost a child is often used to elicit an emotional response. It is a difficult place to be in a room where that is used as the very worst example and think that is me. And will be me again.
Waverly & Oliver have given me many gifts, but the one I am most thankful for is the gift of empathy. It is not about comparing pain or tragedy. It is about seeing someone's pain, validating it and sitting with them in it.
The phrase "won't let it define me" has been swirling around in my brain. I connected with women who shared deep pain, shame, hurt, anger. In each conversation, I was struck by the fact that these events didn't just happen. They continue to impact. They are constant. They are a thread through every facet of life. Are we doing ourselves a disservice by being too dismissive of trauma?
I have been anticipating the inevitable deaths of my children for almost a decade. I have been with my daughter when she took her first and last breath. I hope to do the same for my son. Grief has allowed me to see the unseen, to have compassion I couldn't have tapped into. Grief does define me.