Monday, November 5, 2018


Yesterday was one of those days that was packed to the brim with excitement and events that could take even the most hardened persons breath away.  It was a day where I felt grateful for so many organizations, people, and experiences that our family has come to be blessed with all because of Sonzee.  Yet at the same time, it was one of those days that weighs heavily after all is said and done, the kids are in bed, and I am left sitting alone with my cup of decaf coffee reflecting on the events of the day.  So many organizations have been created for children and their families to simply bring a smile, or give a moment of happiness, and or make them forget for a moment about the chaos, sadness, and real-life experiences they are faced with.

I promise you, they live up to their lofty pursuits, but I am left with a huge knot in my throat and tears in my eyes.  These are organizations that were founded because of a child who gave the founding member(s) inspiration and then passed away.  Maybe not every child who walks through their doors and benefits from the amazing experience will face the same fate, but there is a reason these organizations continue to exist.  My heart hurts tonight for every parent who has had to face the unimaginable, the unthinkable, and literally the most heartbreaking idea conceivable.  Full disclosure, a selfish part of me is overwhelmed with emotion for what I know eventually lays ahead for me yet have no idea of how to prepare for.  Is there even a way to?

It is very surreal that despite watching Sonzee experience multiple seizures a day, the complications she faces with her CDKL5 mutation, and acknowledging that one day we will face the unimaginable, I have not really processed how it will all play out as a reality.  It is the days where I am humbled by those who live their lives making sure that families like ours have as many happy moments as possible that are most difficult.  It is a day like today that was filled with amazing events mixed in with the usual dealings of CDKL5 that I am torn between feeling beyond grateful and beyond upset that this is Sonya's Story.

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