Wednesday, July 5, 2017

life is decent

We're not really the "make lemonade" type.


In fact, Jonathan designed a new T-shirt brand on our commute Boston-ho this morning.


"Life is Decent"


You know you want one.




Somehow we managed to chase away our melancholia and turn our dreaded day trip into a little family adventure too. His neuro's satellite office is just 15 minutes from Walden Pond. Trevy has been a huge Thoreau fan ever since attending a nature class at our homeschool co-op this year. It was a beautiful day and a magnificently peaceful trek around the pond. We were pleasantly surprised to find that most of the path was wheelchair friendly. Trevy was a trooper during the places we asked him to walk.




As for the neuro appointment...


Well, there is just no making of lemonade when you love someone living with catastrophic epilepsy.




Unless it's watching his doctor's face light up when she saw our family in the waiting room.  I've decided that everyone dealing with catastrophic health challenges should have a doctor whose face lights up for them. 




There are no easy answers or choices for us. Trevor is seizing every day. This is not good. But our path is also not clear. We have some very difficult and heavy decisions in front of us. This week was neuro, next neuro-surgeon. There will be no Walden Pond, but Trevy has already made us promise we'll at least stop at IKEA for lunch on the way home. The picture above is a glimpse of why we couldn't say anything but "yes".

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