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May 08, 2008

Comments

I've never commented here before but I wanted to send my thoughts to your family as you try to get her seizures back under control. Seizures are definitely terrifying to witness and watching one of your children has to be even more frightening. She's a brave girl and she's lucky to have you and her mom to keep her safe and help her get things under control. I'm really at a loss for words. Please know that I'm thinking of you and your family.

oh man. As soon as you mentioned what she said about her mouth going to sleep, I had a feeling where this was going. I can only imagine how heart-stopping that must have been. She is brave indeed!

My mother used to have grand mal seizures and the first time I witnessed one when I was around four years old...let's just say I've never forgotten how I felt. But to watch your own child have a seizure, those emotions must be even more raw and powerful.
Kathryn is an amazing little girl, her calm acceptance of the seizure and its effects are a testament to her resilience and strength. The love and unwavering support she obviously receives from you and your wife will help to guide her on her journey. Sending positive thoughts to you and your family.

So sorry to hear this. And to realize this had been happening to her before when you didn't know...scary.

I think Kathryn misunderstood you when you said that you needed her to do something interesting so that you could blog about it. Make her get a better hobby -- this one sucks. Big hug.

That just terrified me. I'm sure you've spent countless hours scouring the internet trying to figure out what other parents are doing, but I would have her back to the neurologist pronto! They clearly have her on the wrong medication. Poor baby. I'm glad you were there with her, despite the pummeling.

This sounds like a very tough way for you two as parents to live. I think witnessing a seizure in someone you love, especially when you're not used to seeing them is quite a shocking experience. Last year I saw one for the first time, in the middle of the night, happening to my partner (your child would be a whole other level of heart-ache). My first thought afterwards was no wonder they used to think this was some kind of demonic possession in the dark ages. You're right, it looks completely wrong.

Anyway, my most supportive thoughts to you and your family.

How scary. I hope someone can do something to help your little girl or at least figure out what's going on with her very soon.

This post made my heart stop. Like the Medium episode where you realize that guy really has been in the blind girl's apartment all this time. I'm so sorry she's having to struggle with this, but I commend all of you for your strength. My prayers are with you.

Great writing by the way.....

as The Dad it must break your heart. there is nothing worse than watching your child have to endure something you would give *anything* to endure for her. i've been there, and i'm so sorry...

I've been reading your blog forever (I'm an adult twin girl - so, I laugh like an insider) and have passed it on to everyone I know. We email each other about your blog - like we "know" you! When I took this job at the Epilepsy Fdn of Indiana - you were the person I "knew" with epilepsy in their family. If I can help with any info, stupid do-dads like brain erasers (for pencils), ANYTHING, I would gladly. Sending positive vibes....

Wow!! I don't know that I could hold it together if something like that happened.

I could hardly bear to read that. How in the world did you manage to WATCH it?

Holy crap, that'd freak me out. Better for you guys to know now though, so the docs can adjust her medication.

One of my best friends is an epileptic. She's been on meds for it, since she was about your twins ages. Every once in a while, she starts having break through seizures and they have to readjust her medication. Just know it may take them awhile to get Kathryn's right, but they'll get there.

Wow! Just wow! Here's hoping you find some answers to why Kathryn is going through this.

Good lord. That is one tough kiddo you got there. I was petrified the whole time I was reading this, I can't imagine how you felt watching it.

I am sitting here with tears rolling down my face because I have never heard anything that broke my heart this quickly. I have epilepsy. It is terrifying and frustrating when you have no control over what the hell your body is doing with or without your awareness. I am now sympathizing with the spectator part of the disease as my special needs 4 year old daughter has been diagnosed with it as well. Let me tell you there is no word in the human vocabulary that can describe the rage I have that she has to deal with this bullsh*t. I just thought you should know that I feel the same way about your daughter having to deal with it. It makes me so angry my head wants to explode. The world is an unfair screwed up place, and she is VERY lucky to have a dad like you to make it a little less f*cked up.

Just realized that in my red haze of anger I totally left out The Mom and I feel like an ass. 2 great parents makes Kathryn a very lucky girl, not just the funny one who posts online.

She's in my heart and in my prayers.

And you are one heck of a writer...

Oh, this broke my heart. My prayers are with you to find answers and help for Kathryn . . .

I was up with a sick kid last night and I kept thinking about you and Kathryn - I'm so sorry this is happening to you all and I hope her seizures can be brought under control. Poor kid!
As others have posted, at least she's not aware during the seizures, and what a trooper she must be to clean herself off afterwards!
You are in my thoughts!

Can hardly see to type. God... I am so sorry. And so amazed. And so impressed. All at the same time. Makes me think twice about dismissing what my daughters say so quickly. Prayers coming your way.

Geeze! Poor kid. Poor mom and dad.

Please let us know how she is.

Rebecca F.

I'm so sorry for you and Katherine. That is so horrible to experience, on both sides of the seizure. Peace to you and your family.

She's fine. Better than fine. Better than me, in fact.

I'll update more after the weekend.

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