I have been thinking a lot about social media from the prospective of a grieving mother. I have been talking with several different Sanfilippo families, some of whom have a child who has passed away and others who have a child in the throws of the disease. I am not sure how fruitful this post may be, but I am hoping it can provide some reassurance to someone out there.
I have always been one to share our experiences. It is therapeutic for me to write about my feelings, allowing them to flow out and see where they guide me. It is also a beautiful journal that I have been able to delve back into the years prior and reflect on all I have learned and how I have changed. I also hope our story can help others on the rare disease journey and now on the grief journey.
The year before Waverly died I drastically changed the way I shared on this blog and via my social media platforms. She became very sick with the flu and I could see in her, even after her recovery, that she didn't have much time left on this earth. My mom gut was raging, prompting me to prepare for her passing. We did many things. Met with our doctors to have a DNR order in place, spoke with the priests at our church about funeral plans, and I also changed the way I shared about her. I turned inward and wanted to be very protective of her. This was her journey and my job as her mother was to walk with her through it from beginning to end.
I wanted to honor her privacy and personhood. I began by purging my friends list on Facebook. I wanted to be surrounded by actual friends. I had seen other children's passings as theater at times. I have a blog and a Facebook page to share things with those on the periphery. I could post in support groups as needed. However I felt the need to pull in, almost like nesting before giving birth. I wanted to create the safest and calmest space for what was going to become the darkest of time.
I also began sharing photos of Waverly that didn't show the way the disease was ravaging her. There were more photos of her beautiful hands gripping a toy, her feet crossed in her fuzzy colorful socks, her shadow on the sidewalk after a long walk in the neighborhood. Still describing the symptoms, but allowing my words to create the picture.
Those of you who read the blog know that it took me a year to share what her final day on earth was like. I wanted to hold that like a precious secret in my heart. And I still have details that are mine alone.
It wasn't right nor wrong. It was a choice I made. And I am so thankful I did. It was what I needed. It was what she needed.
All of this to say, as I watch fellow families deal with those Latter Days. Create a safe space for yourself and be cognizant of the fact that this is about your child. Retreat, share, delete, unfriend, post photos - do whatever is best for your mental health and heart. You have some control in the journey.