If Not Us, Who?

Today is Dec 1, 2012.  5:37 am Eastern.  I sat up in a shot from a dead sleep.  In the whirlwind of the past few days, I forgot that it was my turn to format and post today’s blog (yes…I think TMR in my sleep).  I jump online and see that one of my fellow thinkers BK saved my ass and took care of it.  See…that’s what we do.  We’ve got each other’s backs.  And I’m not just talking about the blog.  I’m talking about our lives.

Once I realized that the blog was scheduled and set, I should have crawled back into bed and grabbed another hour or so before the kids wake up and the typical Saturday mayhem ensues…

But I didn’t do that.  I made a coffee, sat on my dark patio, and enjoyed the pre-dawn silence for a bit. I started to read my newsfeed and a few PMs on my phone and like a freight train, I started sobbing.  REALLY sobbing….like THE UGLY CRY…boogers dripping and all.  My body trembled.  My chest got tight.  I started to sweat.  It was visceral.

Memories came flooding back. In my Mind’s Eye, I saw J getting his shots.  I’m holding his little leg, whispering in his ear, “It’s ok baby, you’re fine” as he screamed, his little body tensing up as the needles went into his chunky little thigh….one after another. Memories of the projectile vomiting that lasted for over a year of his life.  Images of the yellow, toxic shit.  I can still smell it. Images of the bizarre sores that developed on his little body.  Of the thrush.  Of the petit mal seizures.  All flashing through my head like a twisted flip book you made as a kid.

None of this should have happened. I realized I was having a PTSD moment.

This week has been a roller coaster, to say the least.  I have experienced that gamut of emotions over the past few days.  Disgust, celebration, rage, vindication, and sadness….a deep, terrible sadness.  I keep thinking to myself, “If something had been done after the hearings 10 years ago, maybe my babies would have been spared from this hell.  Maybe YOUR babies would have been spared.”

So.many.babies.

I am trying to type through my tears.  I am fucking furious.  I am heartbroken.  This has brought it all back.  Like picking scabs and opening the wound all over again….rubbing pink salt and ACV in it….

This happened to our kids.  We are NOT FUCKING CRAZY!  We are not looking for someone to blame.  We are just every day, regular people.  Just Moms & Dads that wanted to have children who grew up to be happy and healthy people.  Who grew up to be successful in whatever they chose to do.  We had dreams for our kids.

I have always wanted to travel Europe.  When I got pregnant with J, I knew that wasn’t something in the cards for me.  Then O came alone.  I decided that when I was 50, J would be 18 and O would be 16.  I would take them backpacking around Europe, celebrating three milestone birthdays and making memories on a trip of a lifetime. Autism stole that dream from me.  It stole so many dreams.  Simple dreams that regular folks take for granted.  Will they ever drive a car?  Date a pretty girl and go to prom?  Go to college? Get drunk at Frat parties?  Become successful at whatever they wanted to do?

Now, my thoughts of their future are different.   And very scary. Will they be bullied?  Will they ever be able to live on their own?  Will they have a job?  Will J ever be able to talk without scripting Dora?  Will they ever be truly healthy again?  Will people hurt them and take advantage of them?  Will I be able to care for them long term?  Who will watch over them when I die?

I’m crying again.

I have so many friends in this community….from Original Gangstas to Newbie Moms fresh from the Neurologist’s office…ink on the diagnosis still wet.  Some so optimistic about the hearings.  Others, not so much…and I get that.  They’ve done this song and dance before.  They have testified before Congress.  Marched on Washington.  Screamed from the rooftops for over a decade.

And where are we now?  What have we got?  We are deeper in this shit storm than they could have ever imagined.  “Official” numbers – 1 in 88 (inaccurate, as we all know).  Sick kids coming out of the woodwork.  Autism, ADHD, Asthma, Allergies, Seizures…..neurological damage.  Nothing has changed, it’s just gotten worse.

Image: Ben Killen Rosenberg/Getty Images

So what makes NOW so different??  The cat’s out of the bag.  You can’t ignore the stimming, medically-ill elephant in the room anymore.  People are starting to listen.  To wake the hell up.  To THINK.

We need to keep this going.  No more celebrating.  We need action.  We need to keep the fire lit under their asses.  We need to continue the fight.  WE need to be the catalyst for change.

We owe it to the thinkers before us, to the children needlessly damaged and to the babies of the future.

I am so proud of our community.  We will win.  If anyone can bring change, it’s us.

If not us, who?

I hear stirring over head.  I must now go wash my face and start making breakfast for my Fellas.  And hug them extra tight.  And kiss their little faces a hundred times.  And whisper “I’m sorry” in their ears. I am so sorry, Dudes.  I will go into a box in the ground fighting to make this right.

I love you people.  Keep Thinking.  Keep Fighting.  Keep telling your story.

Make them have no choice but to listen to us.

~Poppy

For more blogs by Poppy, click HERE

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40 Responses to If Not Us, Who?

  1. Diana Gonzales says:

    We all share a soul with the same pain, I felt every word sister! I am fueled by anger and pain. We will win! With my last breath I hope to say “we won.” ♥

  2. Mamabear says:

    Love you and your little dudes. <3 Stay strong sista!!! Give those beautiful boys an extra kiss from me.

  3. BB says:

    George Orwell please come back and help the sheople see…the truth….and demand justice!

    It is no longer “necessary” to do the same things that were done ions ago by mere peasant folks that truly helped people to be as healthy as was possible.
    We’ve come a long way baby!

    Throw in many generations of shots and bad medicine, poverty, famine, wars,industrial revolution,greed, corruption, eugenics, ignorance,arrogance, brutality and we get to this place we are right now, where we have been for many generations.

    My psychiatrist dxd me today with PTSD at such a high level that without some medication to calm down my cns, she fears I might have a Fing heart attack or stroke–for real.

    Just when I thought I was down for the count, unable to make a difference:
    —-This doctor thanked me for sending her the article about the book” Brain on Fire”–it may save a little boy’s life that she had no idea how to help because his sxs are all over the place.She is ordering specific tests to try and determine what exactly is wrong with him.

    *How can we too qualify for some kind of real tests for a real dx?–She asked me to keep on sending her info because it just might be what could help her help us and other people.She is so overwhelmed trying to dx and tx so many sick people that she can’t keep up with everything she needs and wants to and she trusts my insight.Nice!

    She agrees that we need MEDICAL tx, but does not know how to help us.
    She IS listening.Thank you God! Now get us to the right people and tx ASAP!

  4. AmyinIdaho says:

    I’m not even sure I can put words to all of the emotions I’ve felt these last few days. I do know that it’s exhausting though and I think we’re all a bit primed for some PTSD moments. What if…..If only……

    You’re right though – the cat IS out of the bag. And she’s leaving a pile of puke on the step for a few special people.

  5. Jennifer Power says:

    Poppy, you have left me speechless, with tears spilling from my eyes.

    Betty said it for me, “This is one of the most evocative, authentic and thought provoking essays on autism I have ever read.”

    Thank you.

  6. katie says:

    I was just saying the same thing about when I got my son his mmr, i was telling my dad that bc i didnt know better i feel i “pulled the trigger”…..i battle that guilt so so often. Thank you for all you share, we all have so many things in common from the sadness and guilt to the FUA! moments and battle scars for our babies. I am thankful that I found you guys, stay strong

  7. Marco says:

    I stopped saying I’m sorry while they sleep. I just say I love you and I won’t give up. Ever.

  8. Lisa B. says:

    I feel your pain, literally, because I lived it and continue to do so. Will my son ever have a real friend, what will happen if he never stops scripting all of the upcoming episode dialogue on cartoon network? Questions go on and on. We all do what we can, personally I wish there was a fund that would help pay to get some of us to the big meetings or to hearings like this in the future. The hearings created a hope in a lot of us, now we are all hoping they do not let us down…. again. My son born in 2002 received shots that had presumably been in storage for 4 years. After he was diagnosed in 2004 I had been able to look them up in one of the online databases and learned that one of the companies no longer even existed, or made vaccines. Yet they were still in the doctors office and given to my son.

    To those that doubt the power of parents, just know there are those of us that will not just go away, we will never give up, never!

  9. Angela Amdur says:

    This touched me right where I breath and love. Thank you.

  10. KFuller says:

    I can feel your pain, everyone’s pain right through the words. Love all of you so much.
    We are all in this together and will fight till we win.

  11. Ana Maria Abba says:

    You are so right! If not US then WHO will fight for injustice that has been done to all of us?

    I just submitted my statement for the record for the autism hearing. One small step..

  12. Stephanie says:

    I have made this comment many times but the power of your truth has ignited a true Revolution that I’m not even sure you all fully understand yet. I am proud and in awe to be a part of it.

    I ended my letter to Congress with:

    “I would venture to say , you have a group of parents and families behind you like no other in history. We are determined, focused, committed, persistent, passionate and vigilant. We are expecting and requiring change and are willing to be vocal and active participants in the process but we need YOU. Do not let us down. Do not walk away from a generation of children that are being unnecessarily injured for the benefit of profit. This should never happen anywhere, certainly not in our great Country!

    With HOPE for my son, all like him and toward a future with Justice,

    Stephanie Sherburne Turillo Lallo”

    We GOT this! We’re on it. With gratitude to those who have worked fruitlessly for decades before us, with the empowerment of our fellow community and with drive to protect the future, we ARE ON IT!!!

    Thank you Poppy, love you and all of TMR!!!!!

    • PoppyTMR says:

      Big love, Stephanie. Big freaking love xo <3

    • Professor says:

      Wow! I love Poppy’s blog, but I love your letter’s closing, too, Stephanie! That’s so inspiring! And sometimes I think you’re right. I think this is all much bigger than we ever realized when we took it on. Thanks for joining us!

  13. Adrienne Paradis says:

    Great blog – everything wrapped up in a single page! I did fine until the “whisper “I’m sorry” in their ears,” and then I lost it. Not the ugly cry, just the tears streaming down face cry. ;)

  14. Jenn Kaplan says:

    This touched my heart to the point that I can’t really breathe. I do my best to live in the moment, but just the past few days, I too have been thinking about my daughter’s future. What you wrote, is exactly what I have been thinking. I sent my story to Congress this morning. It was painful to relive it, but I did it. We HAVE to win. Failure is NOT an option.

  15. BJ says:

    STANDING OVATION . . . thanks for this, this morning . . . lately I’ve had folks approach me to tell me I am too angry, consumed with bitterness, and I need to “just drop this” and “deal with it.” WELL FUCK THAT. I have every right to be MAD AS FUCKING HELL and I’m glad that there’s other warriors out there who feel the same fucking way. FUCKFUCKFUCKFUCK. And FUUUUUUUUCK. FUA !!!!!!!!!!!!!1

  16. Terry Kowalke says:

    This has re-ignited the fire under my ass. I thank you for that. We must yell it from the rooftops. Thank you!

  17. Liz P says:

    Thanks for sharing. Isn’t it tragic, THIS is what gets us out of bed in the morning, and keeps us awake at night – one day I hope I will stop receiving phone calls and e-mails from newly diagnosed and overwhelmed families who only wanted their child to be happy and healthy and now only want their child to feel better and be safe. That will be the day I finally celebrate because I will know this catastrophe (the harm to our children – NOT our children, themselves) will have finally been driven out with rational logic and reason. Until the day Law stands for The People and Justice prevails I will fight onward; thanks to all of you who stand beside me, push me from behind, pull me forward, and pick me up when I have crumbled into a blubbering heap of momma-flesh!

    • PoppyTMR says:

      “Until the day Law stands for The People and Justice prevails I will fight onward; thanks to all of you who stand beside me, push me from behind, pull me forward, and pick me up when I have crumbled into a blubbering heap of momma-flesh!”

      {{{chills}}}

      Thank you, Liz. xo

  18. Jaimie Condon says:

    Thank you! Every time I feel like I’m losing it and there is no hope, I come here. Your words always lift me back up and give me the strength to keep fighting and thinking. You’re awesome Poppy!

  19. BETTY BROWNLEE says:

    This is one of the most evocative, authentic and thought provoking essays on autism I have ever read. Thank you.

    I know I can always come here to feel vindicated and raised up by reading all the wonderful posts. Never giving up, never giving up – kill me first, but never giving up.

    love you all!
    Elizabeth

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