Embrace Your Experience

By Michelle 


Letting go of expectations is a process; a process that I am still navigating. There are days that those expectations creep in and make an unwanted appearance. I think this is part of the grieving process that every special needs family goes through. Even though Eliana is still very much alive, the expectations that I had created about who she would be were never viable, and I find myself on occasion, grieving that child who never was. Like when the genetic counselor shared our bleak prognosis, when attending “well-child” check-ups at the pediatrician and having to answer “no” over and over again when asked if Eliana was hitting milestones, or while in the middle of a 2 week stay in the PICU when I had to sit and watch through a glass wall for hours as the family across the hall said goodbye to their child for the last time.

I think experts are wrong when they say that the grieving process comes in stages. To me this implies that there is a beginning, middle, and end to grieving. I think a more appropriate term is “waves” of grief. I know for me, my grieving comes in waves, it is intermittent and unpredictable. Sometimes these waves are small and fleeting, other times they are large and lingering. And like waves crashing into rocks along the shore, each time a small bit of erosion takes place, reshaping my experience.

There are many aspects of our journey that are painful and at times hard to bear, but I cannot control these things, just like I cannot control when my grief decides to reappear. But what I can control is how I respond to these situations.

The English philosopher, George Henry Lewes said “the only cure for grief is action.” I have tried to make this my motto. I decided to embrace our experience and try to find some way to pay forward all the kindness that had been shown to our family. We decided to host a golf tournament that would raise funds and awareness for various worthy causes. I was also approached by the FamilieSCN2A Foundation and asked to become a board member and help them achieve their vision of finding a cure for SCN2A-related disorders.

The golf tournament and my work with the FamilieSCN2A Foundation are actions that I can control and in my own small way. I can help others navigate through their hardships, while helping heal the wounds my own have created. By embracing my experience, I am allowing the waves of grief to shape me into a better version of myself. 

The Persian poet and scholar Rumi said “the wound is the place where the light enters you.” No one can escape grief, pain and hardship. We all experience them on some level, at some point during our lives. We all have wounds. So if these things are inevitable, we must be willing to embrace those experiences, to let the light enter, so that you can transform into something better.