Coming To Terms
NUKEBOY2 ON THE MEND
I have a post in my draft box right now from 5 days ago. It’s about NukeBoy2′s seizure last week. It’s 1200 words and I’m only about 2/3 done with it. I don’t know that I will ever post it. I may, but for right now, it just seemed to me to be a bit much. Most of you know the basics: NB2 suffered a seizure last Tuesday and spent that day and most of the next in the hospital being poked and prodded. I posted an update Wednesday morning when the initial MRI results came in and said I would inform you of the final results when they came in that afternoon. I did that, to an extent, on twitter and through email. For those that didn’t see it I can tell you that the MRI showed that he did in fact have a seizure; confirming what the Pediatric Neurologist was reluctant to. It didn’t show what caused it and they really don’t have any idea. Which leaves us worse off than when we climbed into the ambulance last Tuesday. I’ve thought endlessly about this over the last few days, and I imagine that I will think about it for many more. How many more? I don’t know, maybe all of them; or until we get some kind of answer as to what caused it. Then there is always the worst case scenario; he has another seizure. Then they can poke a little lighter and prod a little less and still come up with no answers. That’s the crux of this whole thing; there is just so much about the human body that we still don’t know.
AT LEAST HE HAD A VIEW OF THE HELI-PAD
I’ve done a good job of poking fun at myself over my medical issues on this blog, but it will be impossible for me to do that with this. At the same time, those of you that frequent this blog know that on occasion I can be humorous, and on the rarest of occasions, almost giggle-inducing. I like sharing tidbits about my life and my family, and I will continue to do so; we can be a pretty entertaining bunch at times. So for that reason, we’ve decided that we will do our absolute best to not be held hostage by this “diagnosis.” I put it in quotes because there hasn’t really been a diagnosis. We will do our best to live each day normally, and with minimal worry and what-if’s. I am currently trying to think of a nickname for “he who must not be named.” Well damn, there it is; henceforth, the “next (if there is one) possible seizure”, formerly known as “he who must not be named” will be known as “VOLDEMORT.” That way we can casually ask NB2 about it without it becoming too stressful. I can say things like; “Voldemort hasn’t been sneaking around, has he?” or “If you see Voldemort lurking about, sock him in the nose.” Much like an old friends little sister used to announce the arrival of her lunar cycle by simply stating: “Helen’s here.” I wrote a post about it, actually; you can click on the link to read it if you want. I wrote in when I first started the blog so I know most of you have never read it. I thought it was actually pretty clever, and I know it was somewhat effective as the only one who commented on it was Joeprah and he thought I was talking about my mother in law. I love my mother in law, she’s great! I don’t know why I’m linking to him, the guy hasn’t posted since April. It’s like he’s got another gig or something. I think it will also help NB2 to not have his parents walking up to him every 2 minutes to muss his hair and ask; “How are you feeling? Everything alright? How are you doing?” I don’t want him to feel like he’s any different, but I need to make sure that he understands the situation. I certainly don’t want him walking around in fear all of the time. We’ll take it day by day and do the best we can because, well; that’s about all we can do. Melodramatic? Probably. Realistic? Unfortunately.
Melisa
I think referring to it as Voldemort is total genius. (and yes, that made me giggle) I hope that Voldemort never visits your family again.
And I don’t think you’re being melodramatic at all. It’s going to take some time to get this out of the forefront of your mind and into the junk drawer of your mind: it’ll still be in there somewhere but not ever truly cleaned out. (Does that even make sense? Sorry, it’s early)
(NukeDad) It makes total sense; that’s the struggle right now-making sense of the situation and learning how to live with it. My junk drawer is pretty full already, guess I’d better do some spring cleaning. See? Late again; it’s already July.
Melisa´s last blog ..I *LOVE* These Kinds of Issues
Jul 20, 2009 @ 6:24 am
seashore
I wish I had some magic words that would give your family a diagnosis and peace of mind. But know that your family continues in my thoughts and prayers.
(NukeDad) Thanks, Seashore; that’s about the best we can do right now.
seashore´s last blog ..Squash ‘Em
Jul 20, 2009 @ 9:33 am
SurprisedMom
Melodramatic, absolutely not! Realistic, you have to be.
I absolutely love the name Voldemort. It does add a bit of humor to the situation. Humor is important in dealing with this medical issue. And you are correct in saying it’s much better asking about Voldemort than going up to NukeBoy2 and asking him constantly how he is feeling.
How is NB2 handling the whole situation? And how did you get him to pose for and let you post his photo in the hospital?
Growing up we discovered that two of the six sisters had epilepsy. One sister had her first seizure at 16 at a friends house where she stayed overnight. By reading your twitters I got an inkling of how my parents felt when they got the call to come to the hospital. It was insightful.
Good luck with Voldemort and I hope NB2 remains seizure free.
(NukeDad) Getting the picture was actually pretty easy; he didn’t mind at all and he was feeling better at the time. I’ve talked to a few other people that say they know people in the same situation, and each one has said in those cases the child DID have a 2nd seizure. The only reassuring part of it being that the children are fine now.
SurprisedMom´s last blog ..The Human Condition
Jul 20, 2009 @ 12:20 pm
Karen
I hope he was able to see the heli pad from his bed, I imagine that it was the perfect view for a little boy! I really wish that there were more answers than what they have given you instead of all the questions. You definitely have a good approach to dealing with such a difficult situation. Hopefully Voldemort never comes to visit again and in time this will get pushed to the back of that mental junk drawer Melisa mentioned with all the other background fears parents have for their offspring. In the mean time I am glad that NukeBoy2 is back to normal and he and the rest of you Nukes are in my thoughts and prayers =)
(NukeDad) Thanks, Karen-he was able to see the helicopter, in fact, he got to see it take off and land a few times. He thought that was very cool. The hospital also brought in some jugglers; he got to see a clown juggle 2 tennis balls and a bowling ball. Never a dull moment.
Karen´s last blog ..Eyes for Jaclyn
Jul 20, 2009 @ 12:57 pm
Xbox4NappyRash
Bloody hell.
Scary stuff for sure. I hope they pin it down for you at least. Give you an idea of what to expect.
(NukeDad) They’ve given us the basics, but what they can’t give us is the one thing we need most; a better idea of WHEN it will happen.
Xbox4NappyRash´s last blog ..Sing it, Neil
Jul 20, 2009 @ 1:12 pm
Momo Fali
Joeprah hasn’t posted since April? That makes me feel better about neglecting my Dad-Blogs column. (Okay, not really. I still feel guilty.)
My son knows he’s different than other kids and he doesn’t question it too much. He seems to understand that some people are short, some people are tall and some people have totally screwed up hearts. He doesn’t know he’s at risk for a stroke, but he does know that he needs to tell us if he ever feels funny.
I am SO SORRY you have been thrust into this. I hope they figure things out. I hope your boy stays well. I hope everything turns out okay.
(NukeDad) Thanks, Momo; we appreciate it. I have a feeling that at some point I will take you up on your offer for moral support. I think he knows that something is going on, but he’s not going to worry about it, which is good; it’s NukeMom and I that I wonder about.
Momo Fali´s last blog ..Getting to Know Me: Bag o’ Meds Edition
Jul 20, 2009 @ 2:33 pm
Matt
Dude, I gotta say, your positive approach to this situation is inspiring. I feel for you and your family completely, that would scare the hell out of me. But for what its worth, I think everyone will benefit from your attitude.
(NukeDad) I hope you’re right, Matt. I’m usually a glass 1/2 full kind of guy, I’m just trying to figure out a way to keep it at that level.
Matt´s last blog ..The Wall
Jul 20, 2009 @ 3:13 pm
tom
We’re still puzzling about it too; though we have some seizure experience with Michael, it was a different sort (“myoclonic jerk” they call it) and was treatable once they were able to pin it down by catching an episode on the EEG. I really hope they can figure this out and get an answer, and maybe even a treatment.
We’re all praying for NB2 and your whole family here.
(NukeDad) Thanks, Tom; I’m hoping that it was, in fact, the head trauma from 2 days earlier that caused it and that we will never see it again. The problem is not knowing if that was the cause or not.
tom´s last blog ..Mommy Understands
Jul 20, 2009 @ 3:22 pm
BBD
All I can say is, it does fade to the background. We had an incident with ThingOne when she was younger, shortly after ThingTwo was born. It wasn’t a seizure but she broke out in, I guess they were “Hives”. I don’t know why they call them that, they look nothing like hives. She looked like she had gone 10 rounds with Apollo Creed. She looked as if she was bruised all over and her face was all puffed up, eyes nearly shut completely from the swelling. It makes my stomach turn to this day thinking about it. They had NOTHING to tell us, lots of theories but none of them would commit to a diagnosis. They eventually settled on HSP (Henoch-Schonlein Purpura). Which in and of itself turned out to be not that bad but in the moment it was devastating, I felt so helpless, and that’s not a good thing for a father to feel when it comes to his children.
Keep going forward, live the life you all deserve. It’s much better that way.
BBD
(NukeDad) Wow, Big Bad Daddy, that sounds as traumatic as what we went through-glad to hear she is doing well. I agree with you on the “life that you deserve” part; it took a few days to come to that realization, but we’re not going to wait around for something bad to happen, in fact, we’re going to pick up the pace a little. What’s the old saying? Get busy livin’, or get busy dyin’. I like the first part.
Jul 20, 2009 @ 3:52 pm
WeaselMomma
The uncertainty of the whole thing must be it’s own form of hell. I hope this was just a fluke incident and that Voldermort never rears his ugly head again or if it does, it does so harmlessly and gives you answers and a course of action. I wish you some good sleep.
(NukeDad) Thanks, WeaselMomma; it’s getting a little better each day. The Nukesters are scrappers, so we won’t go down without a fight.
WeaselMomma´s last blog ..And The Winner Is
Jul 20, 2009 @ 4:08 pm
Chuck
Reading through your post and these comments it’s clear you’re one educated guy on something that’s mostly still in the dark. I like to believe I’d be just as strong and focused in a similar situation.
Like the others I pray your son does not have to go through this again and if he does it isn’t threatening and provides answers.
(NukeDad) Thanks, Chuck; I’m trying to learn as much as I can since answers seem to be elusive.
Chuck´s last blog ..Lost and Found
Jul 20, 2009 @ 9:15 pm
Tara R.
That has to be a parent’s worst nightmare, a sick child and not know how to help or what’s wrong.
I hope NukeBoy2 stays well and doesn’t have a repeat of this episode.
(NukeDad) Thanks, Tara; we’re praying for the same thing.
Tara R.´s last blog ..For the win…
Jul 21, 2009 @ 6:38 pm
Arjun Sen
My best to your son and the entire family. I stumbled upon your blog today and loved reading your every day life posts as a father. I’m a single dad who quit my corporate job to be at home with my daughter. I’ve just started a blog called raisingafather.blogspot.com (named after a book I’m getting ready to publish) and I’d love to link to one another’s since we discuss many of the same issues parents face.
(NukeDad) Sounds good. I checked out your blog but didn’t see a blogroll; no biggie, I’ll gladly add you; but I might suggest that you try and post a little more often. I think it would bring traffic to your blog and help your book sales. Thanks for stopping by!
Jul 22, 2009 @ 3:16 pm