I Believe the Words You’re Looking for Are “Thank You”
(In another departure, we are reposting this blog by Julie Bailey Obradovic, that originally ran on her personal blog on January 29, 2015. We thought it was an important and eloquent expression of something that many, many parents have in common. )
On November 15, 2002, we went out to celebrate my husband’s birthday. My aunt had kindly offered to watch our two children for us while we celebrated. It was generous of her to do so, and we gratefully took her up on it. We had a wonderful evening . . . until we returned.
She was standing in the hallway just coming down from the stairs of our split-level home as we entered around 1 a.m. Even though it was dark, her face was clear as day, and it was not displaying a good expression. If anything, she looked as if she had just witnessed a horrible tragedy.
Immediately, without asking us about our evening, she urged us to go upstairs and check on our daughter. According to her, our baby had let out a scream unlike she had ever heard only moments before. She truly thought someone had entered the house and had stabbed her, and she was just about to call 9-1-1.
After racing upstairs, she scooped her up out of the crib still mid-scream. The way she described it, Eve was screaming so hard that she couldn’t breathe, her face red with excruciating pain, arching her back as if to fall back into the crib the whole time. Eventually, she stopped, but not in a normal way. She collapsed in my aunt’s arms, as if to pass out. Although still breathing, she wouldn’t wake. My aunt feared she was dying.
Right then, we got home.
Because I didn’t hear the scream, something I have only heard in my dreams since, I couldn’t gauge the seriousness of what had happened accurately. I knew my aunt was the last person to overreact, and given her panic, I realized something was very wrong. We ran upstairs to find Eve just as she had left her, appearing to be sleeping peacefully in her crib.
I called her pediatrician immediately. Eve had been suffering from repeated and chronic ear infections for over 14 months at that time, at least 11 at our last count, and had been on at least that many rounds of antibiotics, each one a stronger, harsher version than the next, none of which ever did anything to alleviate them. In fact, her gums, her lips, her vagina, and her butt were covered in yeast as a result, and patches of eczema were popping up on her elbow and knee creases as well (something that finally cleared with an antifungal).
I suspected she had another ear infection, which often made her scream at night, and tried not to worry too much. I also tried to calm my aunt who said she knew what a baby crying from ear pain sounded like, and this was not it. She was adamant we go to the hospital.
When the doctor finally called back, he believed it was likely ear pain too given her history, told us to give her some pain reliever, and to bring her to the office in the morning. If anything else happened, we were to go to the emergency room, but he didn’t believe it was worthy of a trip right then.
Because over a year’s worth of my instinct that something was seriously wrong with Eve had been disregarded by my pediatricians, and twice, had been criticized for it, I chose to obey the doctor’s orders. I was tired of being made to feel like I was a bad mom by wanting to do other than what they said.
My aunt was upset. She offered to stay overnight with our son if we would just go. She offered to go with me if Matt wanted to stay home. She pleaded. She begged. And when I finally promised to take Eve in the morning first thing, she reluctantly got her coat and said in a way she had never spoken to me, “I have been a mother for 30 years. I was an aunt to you and all of your cousins. I have been around children and babies my whole life. I am telling you, Julie Ann, I have never heard a baby scream like that. Ever. Something is wrong.”
The next day she was not diagnosed with another ear infection. She didn’t have one, but in an effort to try to prevent them, they scheduled her for ear tube surgery. She would have it December 16th, which she did. It did not stop the ear infections that continued for the next two years, and no explanation for the high-pitched, back-arching screaming fit was ever given. It was as if it never happened.
On December 21st, I gave Eve a bath, careful not to get any water in her ears. I was so hopeful that the surgery would put behind the nightmare of illnesses and strange symptoms that had started with an undiagnosed, hot burning rash on her face at one month old, continued with a large, hot, lump on her leg where she received several shots at 4 months old and never went away for weeks, and then finally manifested as one long ear infection beginning at 5 months until now.
Between the constipation interspersed with yellow diarrhea, the eczema, her hair starting to fall out, the gait she was walking with, the incessant drooling around 12 months, and the hypotonia that had developed around 10 months, I had had enough.
Finally, finally, finally, I thought, this would be behind us. Finally, my baby girl would be healthy. No more antibiotics and their side effects. No more nebulizers for respiratory infections. No more covering her ears at the sound of the vacuum or singing. No more prescription creams for skin rashes. No more sleepless nights. No more.
I wrapped Eve in a towel and called Matt to grab the camera. In my newfound sense of relief and hope, I wanted to capture the beginning of a new chapter for her. He met me in her bedroom and together we tried our hardest to make her laugh and smile to get a great photo. (These were the days before digital cameras, and film was not something you wasted.)
Within a few minutes, I realized something I hadn’t until then. Eve had stopped smiling. No matter what we did, no matter how hard we tried, there was nothing, just a vacant, expressionless, unengaged face of angel looking in our direction but not really at us.
Worse, I simultaneously realized, she hadn’t spoken in weeks either. She didn’t have a lot of words that year, but she had words. She pointed, she repeated, and she tried. On the floor of her bedroom that night, actually ever since Matt’s birthday I could prove with video, they were gone.
I quietly asked Matt to put the camera away and got her ready for bed. Without saying a word, I went to my room, turned off the light and lay in the dark on my bed towards the direction of her nursery. Still in my clothes, I stared wide-eyed into the dark, filled with an anxiety that has not left me since.
I knew in that moment . . . I knew in a way that only a mother can know . . . my life, her life, and our baby girl was forever changed, even though I would spend the next two years believing that because a doctor didn’t confirm it, I must be wrong.
A few weeks before Matt’s birthday, Eve received her fourth DT DTP vaccine, her fourth Prevnar vaccine, her third polio vaccine, and her first MMR at the same time. This occurred within days of ending another round of antibiotics. Although we can never prove it because we didn’t go to the hospital that night, nor were the proper tests done the following day, the description of what Eve experienced that night is identical with a condition called “encephalopathy”. That’s a fancy word for brain inflammation and swelling. A high-pitched scream, an arched back, and neurological damage afterwards are a textbook description of the condition.
Here are the symptoms and causes per Medical News Today:
Encephalitis can develop as a result of a direct infection to the brain by a virus, bacterium or fungus (infectious encephalitis, or primary encephalitis), or when the immune system responds to a previous infection; the immune system mistakenly attacks brain tissue (secondary encephalitis, or post-infectious encephalitis).
Primary (infectious) encephalitis: according to the NHS (UK), there are three main categories of viruses: 1. Common viruses, such as HSV (herpes simplex virus) or EBV (Epstein Barr virus). 2. Childhood viruses, such as measles and mumps. 3. Arboviruses, which are spread by mosquitoes, ticks and other insects, and include Japanese encephalitis, West Nile encephalitis and tick-borne encephalitis.
Secondary (post-infectious) encephalitis: could be caused by a complication of a viral infection. Symptoms start to appear days and even weeks after the initial infection. The patient’s immune system treats healthy brain cells as foreign organisms that need to be destroyed, and attacks them. We don’t know why the immune system goes wrong and does this.
Encephalitis is more likely to affect children, elderly people, individuals with weakened immune systems, and people who live in areas where mosquitoes and ticks that spread specific viruses are common.
The package insert of the MMR vaccine lists encephalopathy as a potential, albeit rare, vaccine reaction. So does the DTP. The United States Federal Claims Court for vaccine injuries has also awarded numerous families compensation for children who have suffered encephalopathy following the DTP and MMR, including dozens of children since who have actually been compensated for death caused by the MMR. Yes, per our federal government, more children have been killed by the MMR in the last 10 years than have died from the measles. The threshold of risk-reward benefit appears to have been reached.
Within a year of this episode, I began to research what could possibly be wrong with my daughter and why. Until then, I had implicitly trusted the medical establishment with both of my children’s lives, and my third that was on the way. Even when I doubted their choices, I always did what they told. Always. And when they told me that my daughter was likely not talking because of her brother, and that not all kids crawl, and that it’s normal for kids to shake their heads back and forth, and it’s normal to have constipation for a year, and on and on and on . . . I believed them.
It wasn’t until I had heard about the Homeland Security Act of 2002 and the secret “Lilly Rider” that had been anonymously sneaked in at the 11th hour to protect Eli Lilly and their vaccine preservative Thimerosal from liability (later credited to Dick Armey – R), that I ever, ever, ever questioned vaccines or anything about them. As many people currently believe, I also believed vaccination was a miraculous duty in the modern world. If I needed to get my child a shot at two months old, I was there on that day, no questions asked.
There was no Jenny McCarthy in 2004 when that happened for me. I had no clue who Dr. Wakefield was, what he had published, or how or if that was remotely relevant if at all to my life. There was no Generation Rescue, no Autism Speaks, no Facebook, no Twitter, and very little social media available. At best, you found Yahoo groups where you could gather ideas for research and keep up with the politics. I, like thousands and thousands of other parents across the globe, had to do the research my self.
When my third child was born that year, there were far more questions than answers regarding to what had happened to Eve and why. But within a few months, I learned some frightening things . . . that my brother had had a horrible reaction to the MMR . . . and that my mother, in spite of repeatedly being given it, had never developed immunity . . . and that the measles virus could take up to 30 days to enter the brain upon exposure.
I learned that the symptoms of everything wrong with my daughter were the symptoms of mercury poisoning . . . that mercury had the power to open the blood-brain barrier and allow viruses, bacteria, and other toxins in that should never be there . . . that she had been injected with mercury on the first day of her life . . . that the CDC had studied children who received no mercury in the first month of life and compared them to children who had received 25 mcg or more and discovered there was a 7.7 relative risk of developing autism (and an 8.35 RR of ADHD), and then redid the study four more times over the next four years to get that risk down to 1.52 . . . and then destroyed, lost, or sent the original data sets offshore so they could never be independently analyzed . . . But only after meeting at Simpsonwood, Georgia to figure out how to protect themselves from lawsuits. I learned how they hired the IOM to exonerate them, and how they lied under oath to Congress on July 18, 2000, pretending to know nothing about that which had just been revealed at Simpsonwood . . . which happens to be my anniversary, and the day I confirmed I was pregnant with Eve.
You can read the whole story and download all of the emails and studies and verify everything for yourself here at www.putchildrenfirst.org or by simply reading David Kirby’s award-winning book about the whole debacle, Evidence of Harm, or Dan Olmsted and Mark Blaxill’s meticulous account of the history of mercury in medicine in their book, Age of Autism. Or you can even save yourself all of that time and watch the new documentary “Trace Amounts” www.traceamounts.com somewhere near you in the next few months.
Many journalists and bloggers and doctors have decided the behavior of the CDC is and has been perfectly normal, that it’s perfectly fine for them to investigate themselves and find themselves not guilty, and that the fact that the explosion of neurological disorders in the generation since (all which are symptoms of mercury poisoning . . . ADHD, autism, speech delay, tics) is nothing more than an unfortunate coincidence. That is actually what a doctor said it was to David Kirby on Meet the Press in 2005 . . . “An unfortunate coincidence.”
And so I had a choice that year as my newborn baby came into the world in 2004. Do the same thing I had with Eve and expect a different result? Or take a step back, really investigate what was happening, read all of the science for myself, and wait. Hold off until I knew more?
Crazily, for 6 months, I did the same I had with Eve. I was too afraid to challenge my doctors. Too afraid to leave my baby unprotected. Too afraid to even bring up the corruption being unearthed at the CDC. I vaccinated my baby on time, every time.
And then she got an ear infection, at the exact month as Eve had first gotten hers. I fell to my knees and begged God . . . begged Him . . . that if he would just spare me this daughter . . . that I would do anything in my power to help kids like Eve and to get to the bottom of what had happened. We stopped vaccinating right then and there.
In my worst moments, I wish every condescending, know-it-all parent, journalist, blogger, and citizen who never had to live through what we did . . . never had to make the decisions I had to make . . . never had to learn of the betrayal of their government and medical community on the back of their child like we did . . . never read a study, or the minutes of Simpsonwood . . . never heard of Brick Township, Frederick Wellman, William Miller, Dr. Elizabeth Peabody Trevett, Poul Thorsen, or Willian Thompson and have no idea why they matter . . . the pain of a medically brain injured child.
I wish all of those people the bullying, the vitriol, the isolation, and the hatred of being a parent in my position.
I wish them the suffering of the loss of a child that is still alive. March 27, 2001, I brought a healthy, beautiful, vibrant baby into this world. Over the next 18 months she got sicker and sicker, all the while no one doing anything to make her better, and on November 15, 2002, the daughter I once had . . . the child she was meant to be, basically died. The baby girl I had given birth to was gone, but not.
I wish them a lifetime of regret. A lifetime of never having closure. A lifetime of anxiety and panic and worry. A lifetime of loss and an indescribable, never-ending soul-wrenching heartache that taints every moment of every day for you, no matter how hard you try it not to.
I wish them the pain of going it alone. Of knowing that because your doctors didn’t do the right tests and file the right reports, you will never see a dime.
I wish them a lifetime of watching drug commercials with side effects taking up half the time and then being told the side effects of vaccines don’t exist . . . and that even if they do . . . even IF they do, they condescendingly say . . . it doesn’t matter. Your child was an acceptable loss to society. Some kids gotta die so more may live. Guess you guys pulled the bad straw.
I wish them seeing commercials of lawyers offering to compensate you on that same drug five years later because you can actually sue drug makers for their shoddy work with those drugs. I wish them knowing what it feels like to know they have no such recourse for their child.
I wish them being told they are liars, and dangerous, and public menaces, even though there is not a shred of evidence of that being true in any capacity of their lives.
I wish them the pain of someone they love and trust and care about, someone they think has their back and believes in them, post a factually incorrect, not-even-kind-of-based-in-truth article or graphic on a controversy they have spent 5 minutes reading about but you have spent every day of every year for 10 years immersed in, and realizing all this time you were wrong. They think you’re a misguided lunatic, and it was easier for them to tell you this in a passive-aggressive way on Facebook than to your face.
I wish them sleepless nights and night terrors where you wake drenched in sweat, certain you are being buried alive or doing everything you can to save your child from a fire but can’t kick the door down.
I wish them at least one suicidal thought because the guilt of what happened on your watch and the anger of why and how and the level of betrayal you feel is so deep you see no other way out of the pain for the rest of your life.
I wish them a lifetime of wondering what their child would have been like. Of never being able to attend a school function, a parent teacher conference, or sporting event and not wondering, what if? Of having children the same age in their families and neighborhoods that went unscathed and wondering, why her? Why you? Why not them? Of every milestone of your healthy children being a reminder of your unhealthy child’s plight. Of never having a single moment of joy for one child without instantaneously feeling sadness at the loss of it for the other.
I wish them hoping, begging, pleading that there really is a heaven so that when they die, they finally get to meet that child.
I wish them being told they are a horrible person for even thinking that.
I wish them this and so much more. In my worst moments, there is so much more.
And then I think, no. I don’t wish that. I actually don’t wish this on anyone. I live in the Twillight Zone, one where my reality is not real according to the authorities. Where my pain, my child, her life, and our loss not only didn’t happen, but that it doesn’t matter if it did. No one, not even the people who hate me for simply not wanting to lose another child in the same way and to protect other parents from the same fate, deserve this.
And so then I wish for two more things. Forgiveness and faith. I pray for forgiveness for my evil thoughts. I pray for forgiveness of myself and the people, policies, and programs put in place that led to this disaster.
I pray for the faith that somehow, some way, this will all get worked out and we can do what every single person on either side of the controversy ultimately wants: to protect kids. To RESPONSIBLY and CAUTIOUSLY prevent infectious AND chronic disease.
I pray for the faith that someday my child’s sacrifice in the war on infectious disease will be honored. Just as we honor those that fall at the disease, I pray someday we will acknowledge, honor, and care for those who fell at the hands of friendly fire. They are just as precious.
I pray for the faith that those responsible for this disaster will someday see justice for what they have done, and even more so, for masterfully taking the blame off themselves and pointing it at the families of the victims. Evil genius, I say.
I pray for faith that there is a reason, even if I never get to know what it is, that this had to happen . . . to Eve and to us.
Meanwhile, I kindly ask that if you believe that Matt and I are a menace to society, bad parents, liars, misguided, delusional, desperate, or any such negative connotation, to have the decency to simply unfriend us, and not just on Facebook, but in all areas of our lives.
If you believe we would truly try to hurt a child, allow the world to explode in infectious disease, or follow quackery, unfriend us.
If you have failed to do your research and do not know that there is a whistleblower lawsuit against Merck right now, by two of their own virologists who claim they were asked to lie about the true efficacy of the MMR vaccine (basically, it’s not working well anymore), unfriend us.
If you believe that we owe you or society the potential loss of the quality of our youngest daughter’s life by exposing her to the same medical procedures that resulted in the actual loss of the quality of our eldest’s, unfriend us.
If you think that didn’t happen to Eve, unfriend us.
If you think you know more about what happened to our daughter than we do because you watched an Upworthy or Penn and Teller video, unfriend us. (Funny, we’re not supposed to listen to celebrities in this issue unless they hold a certain position I guess.)
If you think continuing to inject a pregnant woman, infant, child, or anyone for that matter with a neurotoxin made by Eli Lilly, that has never . . . not even to this day . . . been tested for safety, not to mention was deemed too toxic for dog vaccines way back in 1935 . . . is an inconsequential responsible health policy, unfriend us.
“We have obtained marked local reaction in about 50% of the dogs injected with serum containing dilutions of Merthiolate (Thimerosal). Merthioiate is unsatisfactory as a preservative for serum intended for use on dogs.”(Director of Biological Services, Pittman-Moore Company, letter to Dr. Jamieson of Eli Lilly Company dated 1935. U.S. Congressional Record, May 21, 2003, E1018, page 9).
If you think the Bush Administration and the CDC could/can be trusted where autism is concerned and have behaved ethically and reliably, and that parents of sick kids, the ones who did exactly as they were told and have no other agenda than to help you protect your own children are the real enemies, unfriend us.
If you think you have the right to judge my family members, siblings, best friends, neighbors, colleagues, and acquaintances who were eyewitnesses to the loss of our child, to our heartache, and will testify to our character and have chosen to take a different path to protect their own children as a result, unfriend us.
And finally, if you think that it’s okay for some children to die so that more may live, I kindly ask that instead of shaming parents who have already given society a child and have decided, “You know what? I’m not giving you another one, and I’m not even going to take a chance on that,” that you reach out them.
I believe the words you are actually looking for for these parents, instead of “stupid,” “misguided,” “maniacs,” “public menaces,” “criminal” and more hateful choices, are “thank you.”
Thank you, for giving your child to the war on infectious disease. Thank you, for taking one for the team. Thank you, for dealing with an insensitive society who has never acknowledged your sacrifice, let alone offered to help you care for your child.
And most important, thank you to the child who gave her life to the effort. Thank her.
Those are the words you should be using. But be prepared. They probably won’t be returned with, “You’re welcome.”
I know I wouldn’t say it. Neither would my daughter. I’m positive she would have preferred her life to have been preserved, as she often now asks me, “Why I am different? Why is it so hard for me to fit in?”
No, I would have never, ever, ever given you or any other person on the planet my child had I been asked. Never. I vaccinated my child to protect her, not you or anybody else.
And deep down inside, as condescending and self-righteous and self-assured as you may be about what you think you know and why you know it and why I’m wrong, you know you are the same.
You know that you would never offer up your child to the greater good either if they asked for her, and you know you wouldn’t dare take that chance with another one of your children if you were in my shoes.
You just have the luxury of never having had to make that choice or live this life.
You should say, “Thank you” for that too.
~ Julie Bailey Obradovic