Friday, April 3, 2009

Walking the Line

I can't explain effectively why this week was worse than others for me and Jen. The end result of the week is that it really wasn't all that different than weeks prior, but for some reason maybe she and I were just a little weaker this week than in week's past and had a tougher time coping with the ups and downs that every day brings with this never-ending saga of Bennett's condition.

Some random thoughts...

How Can You Possibly Thank Everyone?
Those who have e-mailed me an encouraging note, reached out to a total stranger, cooked a meal, come over, called, sent cards, whatever any of you have done to help, I can't list everybody but I thank you all, especially this week, it's been a tough one.

Other Stories Matter Too
Many parents struggle with this and I have been meeting lots of folks. For example Danielle shares her son's story on her own blog, which I follow. You should check it out, it's called Dear Trevor. Mike, another blogger, has a great website dedicated to his daughter and her struggles with IS/Epilepsy. Check it out at Marissa's Bunny. A gifted writer too, and believe it or not a fan of some ReSaurus toy stuff from way back in the day. Small world huh?

On Danielle's blog yesterday she had a link to a video on the site for CURE, which stands for Citizens United for Research in Epilepsy. If you want to watch the video you should, shows how Epilepsy in all its various forms affects more lives than you can possibly imagine.

CURE 2009 Video

Bennett's Latest
Blood pressure has been very high for the last couple of days, and that's actually OK since we are going to be weaning him off of ACTH as of today/tomorrow anyway. I guess you would have to label ACTH a failure.

Funny that. I've never seen a situation where you can spend over 100,000 dollars (which we did to get this medication) on something and then you don't get a refund if the product fails.

Weird. Anyway, they had already switched him to Topamax as well and frankly we aren't really sure what lies ahead. Maybe the Topamax will do the trick, maybe they will want to try and add a new med, I have no f-ing clue. Most doctors don't either, so don't blame them. There is no 'standard treatment' here. That is why it is such a difficult thing to treat.

His seizure clusters are scattered right now. Sometimes he has more of an absence type (staring, sort of unreachable) for a few minutes (more early in the day) and then maybe a cluster or two of about 25-40 each night. Sometimes one cluster, sometimes two. Most of the time two clusters with, like I said, maybe 25-40 individual seizures (spasms) in that 10-12 minute time frame. Sometimes it's one cluster only in a day, sometimes its full-blown cluster early, absence style at night. One day it was five clusters. One day I counted over 53 seizures in a cluster, which I had not before or since. You just never know.

So bottom line is that current ACTH treatment is going to be going away, Topamax is being introduced into his system as of right now, and another meeting is scheduled next week with someone to talk about other options.

Tom Petty was no idiot. The waiting really is the hardest part.

Anyway, it's gloomy and rainy today and I have some work to accomplish, so I'll leave it at that.

Actually no, scratch that...let's wrap this up on a positive note. Jen's sister sent this to her a day or two ago, and Jen printed it and showed it to me. I went to the website from where I got it, The National Down's Syndrome Congress, though you can find this writing in a LOT of different websites by googling 'Welcome to Holland'.

It is a piece of literature/poem/essay, whatever you want to call it and it was written by a woman named Emily Perl Kingsley, a mother who has a child with Down's. Even though Bennett does not have Down's, I think the writing itself is very appropriate for any parent struggling with a situation where their child has a life-altering condition.

Welcome to Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

© 1987, by Emily Perl Kingsley. All rights reserved.


  1. That was an awesome post, Ken. It had me go through a range of emotions, which I imagine pretty much mirrors what you go through every hour. Wish I could be there to help you - I would if I could.

  2. great post and the video was cool too.

    man it still makes me angry every time I think of the financial cost of these drugs and shit....what the hell...

  3. First of all, I just want to say my heart goes out to you as you try to navigate through this world of unknown that comes along with IS. As there are so many different paths, medications, treatments and outcomes to try to figure out.

    I found your blog page through Dear Trevor. My daughter also has IS. I went back and read through some of your old post and a few things popped into my mind that you might already know about but worth mentioning...

    Have you joined Yahoo IS group? I am not sure which group you were referring to in one of your post.

    Also, have you been on Austin Ben Connor's blog page. I believe Austin started having his seizures after he was a year old. Which, as you know, is rare as they usually start around 4 to 6 months. Vigabatrin was his "miracle" drug.

    By the way, Bennett is absolutely adorable. His smile is just precious.


  4. Hi Ken,
    Topomax has been the wonder drug for Emma. We added it to Vigabatrin and it removed all of the bad background hyppsarythmia. She still has seizures but she is able to focus now and do things rather than running aimlessly into the walls all the time. We have settled on surgery as the right path for her because we want rid of the spasms. Its tentatively set for the end of the month as the doctor still has to present her at the surgery conference but we are very hopeful.

  5. Phil:
    I know you would dude.

    Well, I get that totally, but there are a LOT of drugs that fail for certain people. It happens. Bit to be angry over the costs? Yeah...

    E-mailed you separately, but in answer to your question I have not been able to access toe Yahoo Group. I need to re-join because I cannot remember any of my former yahoo info re username/password.

    Is this the same mother to Emma on the IS Community Board? If it is, your post on the IS Board about Emma was gut wrenching, but thanks for writing it.

  6. Yes Ken - same person. Take care of Bennett. We can get our children back from this.

  7. I found your page through another webpage & I wanted to reach out and say "hello" My daughter also has IS. She is almost 3yrs old. It is a challenge every day but what a blessing she is!


  8. Been thinking about you all quite a bit the past few days. i pray the drugs work. you know my husband and I went through multiple tries of fertilty and the drugs for one cycle are over 6K no guarantees but thank God for my insurance that covered almost all of it. it is a rip. If you had to pay out of pocket and it could possibly help your son get better I know you'd do just about everything you could to afford it, yes? my son Luke and i pray every night for Bennett to get better soon. I know you said your faith was lost long ago but, I will say that has been what kept me sane when we lost our twins in 03. I will keep praying for Bennett and all of your family to get through this and for Bennett to get better. Hang in there.....

    Laura W.

  9. Hey Ken, been out of touch, but I caught up on your son's condition from the thread at RTM. Very sorry to hear about it. I've got a childhood friend who had to struggle with epilepsy his whole life, so I know it isn't an easy road. But he got better, and I hope the new treatment works for your boy too.


  10. Dare:
    Thanks dude. Been a while, hope all is well in your world and thanks for stopping by.

    Thanks, appreciate the prayers.

    Read some of your page. Wow, what a long journey you have been on. Did your doctors ever attempt to use ACTH or Vigabatrin or anything like that? I did not see it on your medical history you had on the left. They ever have an official cause for the IS?

    How do I subscribe to your site?


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