It's Tuesday, April 7th, and we still have not reached our goal of seizure freedom for Bennett. Made a decision today, gonna stop wishing for it each day. It's killing me. I wake up, push down the pit in my gut, say a few words in my head about hope and that 'Today could be the day!' and all that and talk myself into getting out of the bed and into the real world.
I've got to stop that.
Not stop the hope, that isn't what I mean. I will always hope, but I think that instead it needs to go like this in order to maintain some sanity, which slips away each time I watch Bennett enter a seizure cluster. From now on, I am going to wake up, push down the pit in my gut, say a few words in my head about hope and then say 'Let's see what happens today!', then talk myself into getting out of the bed and into the real world.
Why am I at this place in my head? Because of Monday.
Quick set-up. I ended up watching Bennett quite a lot from Thu-Sun. Thursday night Jen had somewhere to go. Friday night she had somewhere to go. Saturday during the day I was around all day with Jen at the house, and Sunday she took Carter out for some one-on-one time with our 4-year old, who has been somewhat neglected of late.
So...I had a front row seat to 4 straight days of seizure clusters, and Sunday was bad. He had a lot.
So Monday, all day while he was with his grandparents house and went with them on errands, he had none. I heard about that at around 3PM...so of course, there goes that WISHFUL THINKING again...hey, today maybe really is the day? But of course, by 7-ish, there's Bennett, having multiple 'clusters', around 3 different clusters at night.
So I have to adjust my thinking before I go mad. And I am not really sure how. To balance keeping hope and staying positive, with eliminating some daily wishful thinking so that I don't have to feel crushed every day. No idea HOW to do that, but it is where my head is at and it is what I need to figure out and fast.