My parents are right (how annoying!) – I only post when something is going wrong or has changed for the worst for Ben.
When Ben learns something new or improves a skill, we celebrate it but for some reason I don’t describe here how wonderful it is. Instead I leave this page for the downward turns and spirals that impact his day to day.
Ben’s seizures are changing. This is not uncommon for anyone who has any kind of seizure disorder and there are many factors that can contribute to it. Growth, general deveopment, age, health, neurlogical changes (and those are just the ones I’m aware of).
It’s scary though. Ben has been “stable” for nearly two years. His health has been moderately well since our foot fiasco in May 2013 and we feel like we have a pretty good hold on how to address his health. We haven’t been to seen his doctor since October; unheard of. We usually have a standing appointment – monthly, sometimes bi-weekly, sometimes weekly depending on what’s going on.
It’s hard to allow myself and justify being upset because days like yesterday are expected but that’s my baby. He is my six year old baby and he has the abilitiy to break my heart and affect me like no one else. I constantly worry for him but use that worry as means to push on through and as a force to ensurethat his quality of life is amazing.
The rational parent in me accepts that consistency is unattainable in the life of someone so medically fragile as Ben is. But the optimist in me knows how strong he is and that he kicks major ass considering what he’s been dealt with.