Tuesday, April 7, 2009

Because of Monday

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.


  1. That's the magic isn't it... balancing hope with staying positive. If only there WERE a simple way!

    As I said, it gets easier... the balancing, the stress, the pit in your stomach. It never really goes away. Even when Bennett does become SF, you still have those feelings of WHEN/IF they will return. But the pit gets smaller and you become better at dealing with it.

    Until then, lean on your friends in the IS world. That is WHY we blog and WHY we have the support group. To be there for each other on the up days and the down days.

  2. Where the heck is that Yahoo group? I decided just to re-sign to Yahoo since I cannot find my old info and now I cannot even locate the group. Duh...

  3. Thinking of you, Ken. It's not a real consolation, but medicine really is a trial and error process whereby you start with the mildest type and work your way up. Thats what happened with me. And of course once they do find that perfect balance they'll hang onto it. I'm confident they'll find it. And I know when I was younger I was really like, "why would you not just start with the absolute strongest??" but if it's a long term medicine then the milder the better.

    Plus, like I mentioned in a past blog, after my crazy powerful sleep meds that sucked, it was a pile of herbs in water that helped me sleep. It's also about figuring out what works with his particular chemical composition.

    It's a sucky, horrible process, but we're all wishing the best for you and it will work out. Promise.

  4. My nephew who is 5 just started having seizures. He's been to the ER several times and has had them there too- now the meds he is on have caused him to regress. It is all very scary and I will have to locate a group for his father to use as support. Like anything- I guess all we can do is take it one day at a time.

  5. Suzanne:
    It is a real consolation, it really is. It's heartwarming to know that Bennett and I and our situation is in your thoughts. Really is. Sorry your Easter won't be as chocolatey good as it was when you were a kid. :)

    That just sucks in all kinds of ways. Was he diagnosed with actual epilepsy? How do the seizures present? At his age, it's probably not in the Infantile Spasms classification, but it is definitely epilepsy of some kind if he has had more than one in a specific time frame.

  6. http://health.groups.yahoo.com/group/infantilespasms/

    There you go Ken! Thats the yahoo group.

  7. Thanks...actually found it last night and applied but haven't been approved for membership yet.

  8. Hang in there, Ken. Do the best you can and keep hope alive and you'll do just fine. My prayers are with Bennett and your family.

  9. Almost to the day we're 12 months on from where you are.....almost demanding that this drug would work, then when it did wondering if it would come back meaning every twitch was greeted with suspicion.

    I got a lot from other people's stories...good and bad and soon it becomes about what is going well rather than what isn't. (Most of the time anyway....)


  10. Greg:
    Thanks dude.

    Thanks. Glad it worked for you. Wish it had for Bennett, but sadly it did not. I question whether the dose was high enough, but I am not a doctor. But as he is weaning off the severity of the seizure activity is increasing, so we need to come up with a new plan and fast.

  11. Hi! I stumbled across your blog through Dear Trevor...I'm enjoying it...how frank you are!
    I, too, am dealing with that search for seizure freedom with my son, Austin. The battle goes on...but I still wake up hoping each day will be better than the one before. Gotta keep that hope!



You Are a Beautiful Blank Page...Do You Have a Great Pencil?

Christmas is over. That sound you hear is my sigh of relief. The tree is not actually down, as the opening image suggests. That was a t...