I have been part of the CDKL5 support group for over 5 years. For many years I was extremely active, sharing our experience with Sonzee and Sonzee specific related information with no problems. The older she grew and the more involved she became I found participating to be extremely emotionally draining. I always hesitated because those who were new members would eventually find their footing and until they did, they didn't necessarily want to see a 3 or 4-year-old potential version of their child in Sonzee. Maybe that was my personal take because children presenting like Sonzee don't necessarily reek the hope the newly diagnosed parents are seeking. And now...220 days since she passed away, I represent everything they fear, so what's there to say?
This week a new mom introduced herself and I am assuming my 30-day snooze needs to be reset because I saw it. This week for the first time in months I scrolled down the comments and read everyone introducing themselves and their child. Then for the first time in I don't know how long I clicked into the comment space, but then I sat there, rereading the introduction of the mother, reading all of the comments, tears filling my eyes and left wondering, what's there to say?
What is there to say besides, I once had a daughter who went through all of the same exact challenges as your child and despite the hope you have, the reality is, at some point, they might finally be at peace, but that means you are part of the other CDKL5 group of bereaved parents? There is no way to share her journey without stating the obvious fact, she isn't here any longer. Who wants to hear that? Because I don't even want to say it.
Really, what's there to say?