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Good Mourning

Tears-eyes-16143904-500-368By Cathy Jameson

No, that’s not a typo.  And, yes I meant it.  Good mourning.  I haven’t had a good, ugly cry in awhile.  You know the type—heaving sobbing, uncontrollable tears flowing, heart-wrenching emotions.  Some days I wish the mourning of my son’s diagnosis would come.  But, it hasn’t.  I always think when it does it might help me move onto the next step.

The next step to what, though?  To understanding and acceptance?  I am far from accepting what happened to Ronan.  And, I’ll admit.  I’m still a little clueless understanding every little thing that has happened to him. 

To understand what happened to Ronan and the growing number of children falling onto the spectrum via vaccine injury (because even now children continue to do just that) is beyond my comprehension.  Logically, it should be very simple:  some of kids are pretty fragile and can’t handle the excessive vaccine load the US medical establishment recommends.  These kids should not have received some of the vaccines they did.  They should not have received them when they did either.  Some of these kids would have benefitted to waiting until their immune systems were a little more developed.  They should have also waited until a complete family medical history was reviewed and recorded in their medical file.  But, they did get their “timely” vaccines which turned out to be ill-timed and with family medical history negating the benefit of receiving them.

If parents of some of these kids, including myself, knew that underlying issues or familial autoimmune diseases affected growth and development, I’m sure things would be very different.  I’d even wager a pretty large bet that some of us, and again I include myself, would have let what they discovered in family medical history trump what a stranger in a lab coat rattled off as a must-get-now requirement with their implied “or else” glare.  If we’d known, or if we could’ve been more informed, you better believe we would’ve spoken up.  Guaranteed we would’ve taken a chance and said No way! to certain medical interventions including some vaccines. 

Imagine what kind of conversation that would’ve been.  As we lay our child on the sacrificial exam room table with enough medical knowhow spewing out of our mouth to put the ix-nay on the shots that day, “Hey, Doc.  I know you’ve got certain numbers, expectations, quotas and all, but my kid…it just doesn’t seem right to pump him up with the toxic ingredients in those vaccines.  He was a little premature--he’s still so tiny.  You want to give him a full-dose vaccine fit for a 250-pound man?  That’s whack.  Plus, you see, Dad’s had a reaction to some shots he got when he was in the military.  He’s alright now, but what does that tell you about Johnny’s ‘lil under-developed immune system?  Lots!  I need to mention also that Mom’s got some funky family stuff going on in her line of relatives – you know, diabetes, Parkinson’s, some wonky thyroid stuff, possibly some heart disease, too.  Yeah, weighing all of that into what you and your cronies claim is ‘safety tested’ and ‘preventative’??  Not gonna happen.  We understand you need to make your money, and vaccines are a good way to fill up your pocketbook.  So, if we need them, we’ll come back another day.  No offense, and all.  Just check out the kid for his other “well-baby” stuff, and we’ll run along till next time.  Okay?  I’m glad we had this talk.” 

Yeah, instead some of us didn’t know what to say when the doctor or nurse came around very matter-of-factly carrying that tray with the alcohol swabs, several needles and cartooned band-aids.  Acting and speaking as if we had no choice when yes, we did have a choice had we only known.  It was decided for us.  Quickly.  Vaccine in. Body too fragile, or not equipped to detox it out.  No time to cry over it.  It was done.

I mourn many days, and most especially one of the days that included taking Ronan to his doctor.  That day I thought he was only going to get four shots, not that that’s any consolation.  In fact it was six that he received.  (Damn the multiple vial vaccine.)  We were at the doctor because Ronan was sick.  I knew no better when vaccines were brought up in the same conversation.  Doc had already done the exam and had already prescribed antibiotics to clear up an infection.  As the nurse confidently walked in with the script I remember feeling paralyzed looking at the needles, the clear liquid in the vials and the rubber gloves about to be donned.  I remember the one-sided conversation because I didn’t know enough to say anything in reply.  “He’s going to get this (the multi-vial).  And, these two.  Oh we have an extra one for him today, too.  You got the info sheet on it (yeah, but only 15 seconds before you walked back in; clearly not enough time to digest the information).”  She continued, “He’ll be fine.  You hold him down.  Ready?  It’ll feel like a little pinch.”  I tensed up and watched as she plunged the needle into Ronan’s skin.  Prick.  Yeah, prick is right, but that carries a different meaning now that I think about how some medical providers’ high and mighty attitudes overshadow the needs of a child’s health. 

To have the information I do now, which honestly is still not enough, would I have fallen for the propaganda many of us likely did at these types of appointments?  It’s time for some shots!  He’s due for that next round of vaccines!  Let’s get those in today while you’re here; it’s okay that he has a double ear infection and we know he’ll be chugging antibiotics round-the-clock for the next ten days.  Here’s a sample of Tylenol.  Just give him some if he cries.  You can even double dose it!  He’ll be a-okay.  Trust me. 

Too bad some parents like me didn’t know we could’ve said no, maybe later or what on God’s green earth do you think you’re going to do with that needle?! Not a day goes by that I don’t think about what I could have said or should have looked up before an appointment.  I fret over what happened to Ronan, for what he had and what happened to that bit of normal before the delays crept in.  Ronan had a life of leisure—as a baby all he had to do was grow, play, be cute, eat, sleep and poop.  Mommy would take care of the rest.  I remember those days as if they were yesterday.  They were simple and mostly easy.  Our days are a far cry from simple now.  Realizing how Ronan has changed and how affected he is, I remember the emotions that initially took over, and how some of them still linger.  Emotions I have never, ever felt in my life before—utter fear, anger full of rage, deep sadness that turned into despair. 

I guess in a sense I have mourned, but not to the extent I need to, to be fully cleansed of those intense, negative emotions I harbor so I can really move on. 

Oh, to be cleansed and free of the baggage that I’ve carried in my heart and soul for so long.  What a release that will be when it comes!  It hasn’t happened yet.  What has happened is the filling of my mind with knowledge as I join a network of people who believe in and demand healthy options for children.  It’s thrilling to be surrounded by like-minded groups who have promised to go to the ends of the earth for kids like Ronan.  Ronan has reaped benefits from these groups, and I will always be eternally grateful for their purpose and mission.

Other things have happened too—I have the chance to share what I have lived, learned and even longed for because of Ronan.  Some people might think the knowledge I have now is a gift.  Sure, maybe now how I share what I know is like a gesture or offering to someone else.  But, how I got to this point…how could I look at Ronan’s chronic stool problems, lack of growth, loss of expressive speech, onset of seizures, cognitive delays and a loss of a connection with your own family as a gift?  How is what happened to Ronan like a present waiting to be unwrapped at a party?  None of it is.  Nor is anything he suffers something worth celebrating.

Not a day goes by that I wish I could go back in time to give Ronan a better chance.  Now that is what I would consider a gift!  Can you imagine how joyful that shindig would be?  To turn the clocks back to give Ronan some healthy living instead of being trapped behind several diagnoses with grim futures.  I’d go back in a heartbeat.  Given the chance to change what has happened, I’d also make a point to say to certain people, “Doc, Nurse, are you crazy?!  The current list of vaccines you got there, that’s too much too soon.   Put the needle down, and step away from my baby.  You don’t get to mess up perfect.  Not today.  Not ever.”

I don’t know if it’s that I cannot accept what Ronan has gone through, or that I will not accept what has been done to him.  If I did accept it, surely some of life would be a little bit easier.  I might have more time on my hands because I wouldn’t read everything in sight under the topics of autism, vaccines and special education.  I might feel less stressed and not have to juggling what I do with Ronan’s needs and that of my typical kids.  Instead of running in several directions at once to get Ronan the supports he needs I might be able to keep both feet planted on the ground.  I might even feel confident that I can pick one of those feet up to take a step forward into an unknown that I might not be so scared about.  To have those experiences instead, I might not need to have that big ugly cry after all. 

But, to accept all of it completely makes me feel like I have to submit to it.  I can’t do that.  I’m not ready to do that.  I’m just not.  I don’t have time to grieve just yet.  There is so much more work that has to be done for Ronan.  And, so many more children like Ronan need help, too.  These kids are depending on action from their parents.  They are depending on our voices to demand changes in the exam rooms, in the schools and within their communities.  Our kids need the fight we still have in us. They need our “won’t take no for an answer” responses.  Someday I might accept it all.  But, not today.  Today is just another day of living life as a warrior mama for my precious little boy.  He deserves no less. 


Cathy Jameson is a Contributing Editor for Age of Autism.

 

Comments

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Cathy, I am right there with you. I am SO ANGRY over what happened to my little boy. People often tell me "you are so angry, you need to let it go." You are damn right I am angry! This NEVER had to happen. They KNEW and they did NOTHING to save my son and the other children like him! How do you ever get over something like that? I was the one who took him in for those vaccines. What do you say to a child you were supposed to protect? "My bad" does not begin to cover it. I refuse to ever give in to autism. That would be surrendering to the enemy. NOT.GOING.TO.HAPPEN! EVER! I will fight for my son and all the other children like him until I draw my last breath!

I have nightmares about holding my baby at 2 months when the nurse was giving him vaccines (5 of them). For 10 years I am not able to look at healthy babies without crying. I still cannot accept what happened to my perfect baby, who is now 10, with no language, absent seizures, inability to dress, pour himself a drink, sleep through the night, and on, and on, and on. The list was much longer until 2 years ago. I still have a hard time talking about what happened to my son in the most developed country in the world. Finally, I was able to create a website for my son (WhereThereIsAWill.us). I do not know how much it will help me. But it might help another mom in her struggle to save her child.

Cathy, I have a son on the spectrum, who was born delayed in several respects ( no ability to latch, poor suck, no smiling, poor eye contact as a newborn) received all his vaccines and had full blown autism by aw two. My daughter was born with colic, GERD, torticollis, plagiocephaly, no muscle tone between her shoulder blades resulting in reversed arms, eczema, and of course a brother with autism. Based on the hard fought battle of all of you mothers whose children were stolen from them by vaccines, I delayed my daughter's vaccination schedule, following the vaccine book by Dr. Sears, and waiting until she reached age three to fully vaccinate her, which I know many of you moms would disagree about.
Nevertheless, I write to tell you that you are a wonderful mom, a great person, and although it may not be a consolation, your child's struggle IS a gift. A gift to my daughter who, but for the road paved by you and your beautiful son, is neurotypocal, healthy and strong. Thank you, Cathy, for your wisdom, your toughness, and your son. Love, Michele xoxoxoxoxoxoxoxoxox

It would be so much better if there were some acknowledgement of fault from the doctors. Why do they get to walk away so easily when you are left with grief? They are such a menace with their creepy nurses coming in with the "fun" bandaids while administering life destroying potions. I do, though, think your honest essays, your website, and your willingness to fight will help eventually turn the corner for parents and children. Now, though, it's awful. I can't stand to see kids going into doctors offices.

WOW! A truly moving piece of writing that could have been written by so many of us "warrior mums". Having two boys within the spectrum (one at either end) I fully understand the feeling of wanting to mourn yet being unable - there is just too much to do for our children that there is never a chance to let up.

Cat--I just think you are wonderful. Your words have meant so much to me the last several Sundays (are you sure you are not spying on my backyard, looking in my windows, or have my house bugged?) but this post was just...what do I call it? Lovely. Appropriate. Needed. Honest. All those things. I would like to bury my head in the sand, accept things, move on, whatever. But...I can't. Our son is stuck, so biomedically severely affected since he regressed (he sounds so much like your Ronan). We love him and tell him all the time. But...life is HARD for him. Everything is hard. He was a preemie (a triplet). What the heck was I thinking? If someone would have talked to me then, would I have listened? Why did I think he needed a STUPID FLU shot and ALL THOSE shots at once. I feel so stupid about that. I like your words. And I like your attitude. I won't accept what happened either or stop reading or stop fighting. I'm not ready yet either even though it might make the tension in my shoulders go away? I told another mom one time (after she told me to relax, stop with the ABA and the supplements and just enjoy who my son was) that I'm the one person on this earth who is NOT allowed to give up on him. Ever. Thanks for the post.

Cathy, with respect to you as a parent of an injured child at the hands of the medical establishment...Please consider this...that vaccine injury is not a question of genetic susceptibility, familial or otherwise, or "too many, too soon", but rather it is a question of toxicity--plain and simple, toxins that no child on this planet should ever be exposed to, especially at the most vulnerable time in their life---and I don't mean vulnerable to naturally occurring "germs", but rather vulnerable to man-made, biologically indisputable toxins that should never be injected into the bloodstream of any human being, and passed off as "good science" with greater "benefit" than the reality of what is/has really happened---a violation of a sacred medium, and perversion of the natural immune response.

Consider Dr. Russell Blaylock's work on vaccine toxicity, Dr. Tim O'Shea's "Vaccination Is Not Immunization", or Dr. Bruce Lipton's work on the study of gene expression and the environment (epigenetics).

Also, consider health care providers who respect the natural approach to health and wellness.

Respectfully,

Dr. Febbraro

Cathy, I am here too. Accepting? I can't do it. But I can fight.
I can help my son.

" Put the needle down, and step away from my baby. You don’t get to mess up perfect. "

That pretty much nails it. (Though I would add a few choice expletives in my dream scenario.)

I think there's a lot of value to thinking about things we should have said when we regret a past decision in life. It helps us to be more effective human beings moving forward. Also, expressing rage is cathartic - almost as cathartic as a good cry.

Cathy, I hope you and your family have a wonderful Sunday and that Ronan has an especially good day today.

30 some years and I have not accepted.
Barbaba Fisher has not accepted it, and she has been at it longer than I.
The peds will shoot them up no matter what even now. Even if their older sibling reacted to their vaccines, with Kawasakis and "The Peds knows this".
The will even "STILL" give a vaccine to a child that actually had Kawasakis-- after a certain period of time when the IVIG treatment has time to wear off.
How crazy is that?

Your words could have been written by so many different parents. Thank you for expressing what so many are living through everyday. I'm a grandmother of 10 year old twin autistic boys and their little brother who is 2 1/2, he has not been officially diagnosed... They are the most precious and beautiful grandsons. But like you it has taken time to face the realities of what lies ahead for them... Mourning the loss of their "what if's" for my grandsons and their parents. My daughter and son in law are an amazing team caring for their sons. We, as a family, belong to an amazing world called autism and it makes it a easier to live in it when we know we are not alone! Sadly the numbers of children living in this world is growing. May God bless you and all of the families as we find our voice for our precious children!

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