Ok, so she’s five! I’m feeling like five is a little bit of a miracle! In the first four months when we didn’t know that epilepsy would color her future (mostly pink) I thought five would come pretty quickly. I remember dreading sending her to kindergarten….. flash forward a few years to just a few weeks ago I was celebrating the bus that came to pick her up for preschool not sad at all that our girl was going to school – but excited for her to have the opportunity to be at school! Perspective changes I guess!
She’s overcome so much to become five. Medications that can take their toll – and lots of them. Surgery to remove part of her brain. Days and weeks in a hospital. EEG’s and on and on. I still think at times that she must be frustrated by her lack of ability to communicate – but perhaps I put that on her because of my own desire to know her better, to know her thoughts, her wants, what she is thinking.
They make you rate your child’s quality of life as part of an annual visit you have to have with all the relevant agencies. The case manager asks the question rather sheepishly every year. I don’t know what she expects us to say – we always say that Grace seems to have a good life – plenty of people who love her, toys, a warm place to sleep, snuggling on a daily basis, toys for the tubby.
Sure, its not the life we imagined those first four months – but it’s a good life – and we’ve all made it to a whole hand!