Tuesday, November 17, 2009

Bennett's Party

So, last weekend, on Saturday, we actually had a little get together for Bennett's birthday, though the official 'Birth-Day' was earlier in the week but you know how that goes. It was easier to get people grouped together on the weekend.

Small gathering, some close family members, for this one. Nothing fancy. Though I think had I to do it over again I would have sprung for some different eats. What we had was just OK. But I take the blame on that...I should have been more on the ball there and thought it through. But it had been a rough week for me with the whole medication thing.

Bennett was really not that interested at all in the day, it seemed. He had not had a long nap earlier, and honestly as much as I tried I never ONCE got a photo of him smiling or laughing or anything. He wasn't cranky or fussy all that much, he just seemed a little unplugged. Now that could be for any number of reasons, not the least of which could be withdrawal from Vigabatrin, which I am happy to say is now gone from the medicine regimen. He's now down to just the Lamictal, and a low dose at that. So that's groovy.

Of course, the unplugged thing could very well be me. I could be projecting how I feel onto the little guy. I certainly felt out of it. Well, more than I already do normally. Part of that was coming off of the meds I was on, part of it was an emotional issue I was having. Not sure why or how to explain it truthfully, but I was just down and struggling with my emotions.

At one point I started to tear up and had to just find some Me space and get away from everybody. I know my wife saw the tears when they started, but not sure if anyone else did or not. I tried to just slip away and go do my thing, but waddya gonna do? Hell, not a person in that room hasn't seen a few tears from me this year, so it isn't like I was embarrassed, it was more of a thing where I was having a hard time processing my emotions.

Anyway, he received a couple of nifty gifts that he seems to like playing with, though he had no idea at all about unwrapping presents or any of that kind of thing. Maybe that's what was bugging me. He didn't engage with people like he did a year before, didn't get into the process of diving into the presents like he did a year before, and so on.

But again...that's me projecting on to him I think. And that's a problem I have to solve in my own head. Working on it...just gonna take some time I suppose. Here's to hoping that a year from now I can look back and say to myself Damn dude, you were all that worried and concerned fer nuthin', everything is workin' out just fine...


  1. Infantile Spasms is a thief that wanders very openly into your home and steals while you are helpless to prevent it. It's hard not to compare. I have a healthy clapping pointing toy sharing one year old visiting this week and it's hard not to make comparisons. Emma has never torn the paper off a gift. If I put one in front of her right now she might eat the paper. I suppose some days we are in mourning for what might have been and other days we can be grateful for all the things that have happened. It's hard to imagine the world where a parent never sees their child smile but that is a story that many IS parents tell. I'm so glad that won't be your story. I'm sorry for what the brain tumor and the spasms stole from Bennett. I know he is still coming back to you. It's not been six months yet and there are drugs at play here also. Hang in there because there is much to be hopeful for. (this from the woman who was mouthing off just this morning about yesterdays seizure fest - what hypocracy???) I completely understand how you felt. In terms of car analogy, imagine a year ago you had a fully functional Lexus and now I am asking you to be happy that it's shell is the same even though the engine has changed dramatically.

  2. The previous comment could not have been more perfect....

    I know at times I try and compare Colby to your IS kids....I really shouldn't, as he was BORN severely delayed and NEVER made alot of progress even BEFORE his first seizure at age eight...It's like apples and oranges...But a fruit is a fruit, right? (Sorry!)

    I DO feel like I "get" some of the emotional lows you guys go through....I "get" the wrapping paper thing....Colby tears it a little, then crawls away...I "get" Bennett sometimes just being "out of it"....Same here....ALOT of the time....

    As hard as it may be, keep focused on the fact that Bennett's brain is still SO very young...And still undergoing so many changes...He has such opportunity ahead of him to learn!! And he WILL!!! There is SO much to be hopeful for....


  3. Well, all I can say is imagine the sensory overload. Charlie completely shut down at his first birthday and cried at hsi second. Bennett actually looks quite good to me in all these photos.

    For the record, Charlie's speech therapist has a son with severe autism. He's about 18 now and institutionalized. Sometimes I talk to her about all this stuff. One day she said. "Some days are just hard. Like birthdays. You know you're supposed to be happy, but days like that are just hard." That's like wisdom from Yoda if you ask me.

  4. First, that is one adorable cake!!! I love Elmo.

    Second, it's completely ok to need time to yourself, even if there is a party going on. You are more than entitled to your feelings Ken. I'm pretty sure that no one that was at the party got angry when you left the room. And I'm pretty sure that they all understand your fears and frustrations with the entire situation.

    Hang in there....Bennett's brain is still developing and I have a feeling you guys are going to start seeing some dramatic changes in him soon. {hugs}

  5. Give him some time to find his balance again. It's only been what 10? 12? weeks since surgery?

    Re: your feelings and emotions. It's like we were tlaking about on D's site yesterday, the parents go through PTSD after huge medical dramas like these. You need to give yourself some time to adjust also. I am sure everyone three understands your emotional "dilemmas".

  6. Ditto to the wisdom above. Wish I had been there, I owe you a clasp on the shoulder to say, "It's cool."

  7. Looks like a fun little shin dig, and the cake was adorable. I think Sinead said it absolutely spot on so I'm not going to try & recreate the wheel here, but just know every birthday we go through the same thing. I am the birthday queen and James just doesn't get it why i go so overboard for a kid that we could honestly skip his birthday & he would never know. i tell him this, we don't know what his future holds so if he magically snaps out of this fog one day, i want him to see that we treated him just like any other child and made big deals out of holidays, etc. and gave him opportunites to experiences. We don't know exactly what is going on in the kids' heads cognitively. They might just be getting more out of it than we will ever know. I think i have cried after every single party for connor, but atleast dangit I gave it a try. Maybe just maybe one day he might reach across the table and yank the paper off of that gift or blow the candles on his cake. We'll never know if we don't try. Thanks for sharing your experience though so we all know that we aren't alone in our grief.

  8. Happy to know that Vigabatrin is gone, I know it was giving you some unpleasant feeling, and now it might just be better for you and for Bennett. Not to mention that the less meds a person is on, the better, coming from a pill-popper this has some REAL meaning.

    After stopping the Cymbalta, did you start any other medication, or are you now unmedicated?

    In the beginning birthday parties are really more for the adults, and so they can have something to remember, than they are for the kids.

    Bennett will (positively) surprise you yet! That's when I want some pictures of Ken Lilly crying, tears of joy. But I'm happy you're not embarrassed about crying. We know that most men don't even admit having tear-ducts, much less say they actually cry, when sometimes it's the best thing to do.


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