Monday, September 29, 2008


I have been reflecting a lot lately. I was reading through some of my old myspace blogs today and decided to post a few. In some ways KC and I have come so far, and in some ways, my fears are coming true, but it could be so much could always be worse.

This is not the life I ordered.....
Ok, so I should be happy with what I have. I am lucky. My son is beatuiful, my mom is awesome, I have a good job and good friends. I am greatful...yet I am sad. My heart hurts for the struggles my baby has been through. I fear the future...the uncertainty of it all. But this I can deal with. "I wanted a perfect ending. Now I've learned the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and a making the best of it without knowing what's going to happen next. (Quote by-Gilda Radner)
I understand this. I embrace it in fact. I am facing a fate I cannot change, I am called upon to make the best of it by rising above myself and growing beyond my myself. I am learning to be stong in the face of horror, I remember to smile in between those bad moments. What I can't get over is the guilt. My mind knows that what happened to KC is not my fault. My mind knows that I an informed decision. However, my heart cannot accept the fact that I held my screaming baby down so the doctor could give him a vaccine shot that caused him to have a severe neurological disorder, consequently changing the course of his entire life. He cried the whole way home, woulden't even look at me. I consoled myself with the knowledge that what I did might save him from some horrible disease, instead it gave him one. How am I supposed to live with that? I watch him struggle with the medicine, constant tests, and yet he endures like a soldier My eight month is a soldier : (
Getting back to the fact that I am far KC is developing normally. Most kids with IS don't.
I find myself asking why did this happen to my kid? Why me? When in fact I should be asking myself, how did I get so blessed, that my son is still "normal"? (I hate that word, but for lack of a better one...)
Yet a part of me still wants to focus on the "what if's". What if he developes Autism? (This is common in kids with IS)(Update-it is likely that KC is on the spectrum) What if the seizures don't ever go away? There is still so much damage to be done....What if just one of the many possible future problems occurs, what will his life be like then? Then I find myself back to the one, ever present question. What if I would have known not to get that vaccine?
As I sit here and write, tears spring to my eyes, and I know I need to move on and accept it, and forgive myself. I need to be brave. I need to realize that having courage often means letting go....
I love my son. I would cut my own heart out if it would save him one ounce of pain. I cannot do that. So I will make a promise to myself. I will process this pain, and I will release it. I will accept that fact that I made a decision I regret, and I will make the next best choice. I will endure. I will move on. I will forgive myself, and let this pain go, for myself as much as for him. I will.

My controversial thoughts on mass immunization...

I'm sure you all have heard in the news, the speculation regarding the MMR shot causing Autism. The media has opened a big can of worms regarding all vaccines. Some of you may wonder if you should vaccinate your kids, others know that they will vaccinate either way. If you research this, you will find very strong opinions on both sides of the fence. I stand somewhere in the middle. Here are my thoughts:

The fact that the CDC states that there is no proof that MMR causes autism is directly related to the fact that they won't spend any money researching it!

I believe that vaccinations are a vital part of a healthy society, but the CDC's "one size fits all" methods are in serious need of work.

The CDC states that the thermosal has been removed from all vaccines (not true, some do still contain mercury) therefore this proves that they are safe. All this proves to me is that the thermosal is not the only toxin causing the problem in question!

The CDC does acknowledge that the pertussis vaccine used to cause infantile spasms, but claims that when they changed to the A Cellular, the problem was solved. My response to this is LOOK AT MY BABY. Look at HIM. Within 9 days of having this shot he was having hundreds of seizures a day. He hasn't been right since. Too many other parents tell this same story, but since no one will do the research, it can't be "proven"

The CDC claims that it is best for all children to have the same immunization schedule regardless of medical history, or specific circumstances, yet if there was ever a "one size does NOT fit all" situation, I think this is it. There is a lot of grey area when it comes to vaccinations and it is currently being brushed under the rug.

I will continue to vaccinate KC, but on a schedule that is best for KC. He will only receive certain ones,and they will be all seperated out (never 2 vaccines in one shot)
He will never receive another pertussis shot. (NOTE-I have decided not to vaccinate KC after lots of research and many hours of soul searching)

I can honeslty say that if I knew the risks of getting the pertussis shot, I still might have elected to get the shot for KC. But I didn't know. I made what I thought was an informed choice, but the truth is that I was missing vital information when I made that choice. I had a right to know that the pertussis shot has been known to cause infantile spasms, and the parents who's kids developed Autism from the MMR had a right to know that too. We need to be able to make a choice we can live with! If your perfectly healthy child, changed drasticaly after a vaccination shot, weather it be by siezing like KC, or verbally and socially regressing like the autistic kids after the MMR, you would not give a shit either about the CDC's protocal of mass immunization, or defense that it can't be proven (won't be proven). How am I supposed to accept that answer and care about the masses when I am too busy caring for my sick baby. He was once a happy, healthy little boy. Since his pertussis shot (3 months ago) he has had countless seizures, 5 hospitalizations(***Update-9 hospitalizations to date), been poked somewhere around 25 times attempting to start iv's, had somewhere in the ball park of 20 bloodtests, 9 weeks of daily steriod shots in his leg, been put under 3 times for testing, has 8 specialists, is on 3 different medications currently, along with a special amino acid based formula, and is going to be starting with the NG (feeding tube) as soon as the insurance crap gets worked out and we get the supplies for home. And he's still seizing. It's no wonder that he's fussy all of the time. He used to smile and laugh so much. Now I'm lucky if I hear him laugh once in a day.
There is a book, if you are interested that I think is great. It's listed below. It is not anti vaccine, rather a smart approach to vaccines.
I had a right to know. And more importantly, now I have a right to be acknowledged. My son was damaged by a vaccine, and his life will never be the same. Take some time and do some research. Trust me, you will wish you had.


Apple_Mark said...

thank you

Molli Salzman said...

Hi Karen,

Charlie is actually going to see Dr. Katerji tomorrow. I am SO excited for him to see him, Charlie is doing so well. He is in PT and OT and the OT says he is not 30% delay like they are required for services, but he will qualify because of the IS diagnosis. He is a cruising, crawling, attentive, everything my older 2 boys were at this age. So I struggle with the future as well. When I look at him, so aware and happy, will he be O.K.? Will the IS affect him as he gets older?
I am asking him for a repeat EEG to see if it is still normal and a different vax scedule. Charlie only has up to 4 months and I am in no hurry. You have done extensive research and I was wondering if you could share some of your vaccine knowledge with me :)
KC seems like he is doing fantastic!!!

My email is

Take care

baby trevor's mommy said...

Karen...beautiful...and tragic. heart needed to read this today. Thank you for opening your's up for the world to see! I love your honesty! (((((hugs))))