Thursday, July 23, 2009

How's This for a Happy Nugget?

OK, so you know I'm freaking out about the Cleveland Clinic inpatient visit for Bennett, which starts tomorrow. We just finished packing the car and I am watching Bennett sleep and have the laptop out, so what the hell. Jen is on her way to the pharmacy for her SECOND anti-anxiety med. Wow, that's huge. I'm covered on all my meds for the trip, though I may be adding in Med #5, an anti-depressant I used to take, when I get back.

Anyway, so in case you missed it, Bennett has Occupational Therapy every Thursday morning. Last week, he seized ten minutes in. Wiped. Session over. Week prior? Sick. Couldn't go. Week before that? Seized five minutes in, monster set, the one Sinead calculated out at a per second thing, it was staggering. Session over.

I take him in today figuring that since he has a cold and has been seizing more intensely than I have ever seen in these nearly six months that it would be a total bust.


He had the session of his life.

Climbing, playing, laughing, sliding, playing with toys, pushing this, pulling that. It was like a different child showed up from a Mirror Universe (but one where they don't have goatees) and impersonated Bennett for an hour.

I...was shocked. Audra, his therapist...shocked. The other therapists who know of Bennett's condition and have interacted with him before? Shocked. At the end, one of the other therapists came to me and patted me on the shoulder, cause she knew what I was thinking and knew how badly I felt over the past month of bad sessions, and said Bennett was an absolute delight to have around today. He was AMAZING.

It rips them up to see me react to Bennett's seizures as much as it rips them up to WATCH Bennett's seizures themselves. So...yeah, I'm a dude and it doesn't bother me to admit that they've all seen me cry before. I had some tears in me, and allowed a couple to squirt out. The difference is that this was the very first time they had ever seen me shed some of the 'good' ones.

It felt really, really good.

So there you go. Yeah...he had a horrific cluster when he came home, yeah I am nervous about Cleveland, yeah I am anxious, yeah my stomach is in freaking knots. But for a couple of hours, I was just a Dad who was feeling super proud of his son. Those couple of hours were EXACTLY WHAT I NEEDED.

Put THAT in the Happy Pipe and smoke it, beeyatch!

Now I am gonna go squeeze in another anxiety attack before I hit the road. Next stop...Cleveland Clinic. I always think I should say THE Cleveland Clinic. As in 'THEEEE'. But I am not sure if that is the right way to say it. I think that since I live near 'THEEEE' Ohio State University I think everything in Ohio is supposed to have a 'THEEEE' in front of it.

Anyway, see you on the other side. Not sure when I will be plugged back in, probably not until sometime late Friday night.


  1. This only goes to show us, that as long as we're alive, there will be change, change is the only constant in life, and the only thing we can actually count on.

    I'm glad you could cry happy tears, and that Bennett had a hell of a time on therapy.

    Have a nice trip to Cleveland.

  2. That was an absolutely fabulous happy nugget! Have a safe and panic-attack-free trip if possible.....I hope it goes smoothly and that you get a clear plan forward.

  3. Just found your blog...turns out we have lots in common. I live in Cincinnati, have a 3 year old daughter with IS, cortical dysplasia, just saw Dr. Chugani today, was at Cleveland Clinic (I too get confused over whether "the" should preceed it) on Tuesday...we should talk! We're heading down the surgery route and are going with Chugani most likely...if you'd ever like to compare notes let me know. In the meantime I'll be following along, it's nice to read an IS blog that is also funny and well-written. :)

  4. I'm so proud of Bennett. What a great session. It goes to show that we have to keep taking them despite the odds cause we never know when they are going to surprise us. Take care of each other this weekend. Hugs.

  5. Yes! He deserved that...and so did you all.
    If my spirit could hover over there in Cleveland, it would.

    (Can you believe it is our 13th anniversary on Sunday?)

  6. Sending prayers,positive thoughts and tons of good vibes as you head to Cleveland.Maybe the awesome session was a precursor to great things coming your way.Hoping for that because your little guy deserves it in a big way.

  7. Smoking the happy pipe is addictive!



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