I’ve been thinking about something a lot lately. I’ve been thinking about Risk. About why we do things, or why we don’t. How we weigh and measure the benefit vs. risk quotient, and maybe we don’t. Maybe we just do things because someone else said we should…. without ever thinking about it. I want to tell you a story, a story about how risky things, in my life…. have caused the least harm, and how the “Safe way”…. has probably caused the most.
I’m not sure if you’ve noticed, but I’m getting angrier and angrier. I’ve spent most of my existence as a special needs mom, pointing out the positive. Mourning and expressing the harder things, but purposefully focusing on the good. I had to, to stay sane. But it’s not working anymore. I’ve been going through cycles of grief when it comes to Benjamin that in 15 years as his mother I never have before. It feels a bit like a puberty of grief. It was his birthday this last week, and all I could do was cry. All Day. I cried. All the tricks I’ve done before to shake myself out of it aren’t working anymore. I realize I’m angry. I think it’s a righteous anger. As a Christian, I am a big believer in Giving it God. Laying it at the cross and letting the love of Christ, wash away my pain. It works, I invite you to try it. It’s amazing and beautiful. For some reason, this time, it won’t be washed away. I’m starting to believe it’s not supposed to be. Maybe, just maybe, my anger will produce some words of encouragement, or support, for other people going through the same thing we are. Or maybe it will save a child from what happened to Ben. So here I sit, angry, sad, despairing, and deeply, deeply sorrowful over what happened to Ben. So here I go, I’ll tell the story, maybe for some of you it will be the first time. For maybe some of you it will be the 10th time you heard me talk about it, but this time, in a different light. I want to talk about RISK.
You see, I was born into a “Hippy” family. I was born at home, without the slightest medication. I was not vaccinated. My parents didn’t believe in them. My sister, brother and I were not vaccinated as babies. When I became pregnant for the first time….. I considered home birth. However, I bought into the lie that it was “Risky”. That I would be putting my child and myself at risk if I took that route. So I signed up for the hospital birth. Now, please know, I’m not downing hospital birth. For those who want the interventions available to them, or just feel better in the hospital, it’s the best choice. But that wasn’t me…. I didn’t take that route, because of was afraid…. of the RISK of it. I ended up with high blood pressure, that the only medical model of dealing with that was induction… early induction. I was induced at 37 weeks, because it was “Risky” to have that high of blood pressure. Even though as long as I was lying down, it was fine. I wasn’t given the option for Bed rest. The “Safest” thing was to induce. Knowing what I know now, had I planned a homebirth, I would have been given dietary advice that could easily have helped my blood pressure. I would have been given herbs and salt water baths, and massage and bed rest. I probably would have naturally cured my blood pressure issue, and went on to give birth on time. But instead I was induced, and from that I received, (and chose) every “Safe” intervention available to me. Day’s of Cytotec and Pitocin, Narcotic pain medication, artificial rupture of membranes, Epidural, and finally Cesarean birth. He was early. My next child was born about a week after his EDD, so my guess was Ben was born 4-5 weeks earlier then he was supposed to be. I was happy as a lark. So thankful the Dr.’s had rushed to my rescue and SAVED my risky birth and baby from certain demise. When I left my 6 week appointment, my midwife, who I love and trust to this day, and know she was only advising what the medical model taught her to advice and her supervising OB’s told her to advise during my labor and birth told me…. “For your next pregnancy, check out the Brewer’s diet”. You mean there was a natural way of dealing with PIH (Pregnancy Induced hypertension). They said I might have had Pre E….. but the symptoms did not appear until I was already in the hospital being induced… which came first, the chicken or the egg. It must have been too risky to try that instead of induction….. but wait, isn’t induction risky? Isn’t the fact that it doubles your chance of Cesarean birth Risky? Isn’t Cesarean birth much more risky than vaginal birth? Those were topics never discussed, never brought up. But I get it, I really do….. What if something happened to me, and they HADN’T advised it….. I could sue them!! Perhaps I would have. I’m not making light of it, or being funny, it’s a real issue and one I don’t take lightly.
So Ben is born. He’s a very happy and content baby. He smiles by 6 weeks, sleeps great, and makes great eye contact tracking from the moment he was born. But he was a bit sickly. Maybe because of the Cesarean, but he had lot’s of colds and ear infections that first year or two. The answer to every single one, antibiotics. Every time. It was just what was done. It was too RISKY to let it go on, what if it kept hurting….. what if??? I don’t remember how many times he had antibiotics that first year, but my guess it was over 6. And the Vaccines…. my parents didn’t believe in them, but I was a rebel. I believed and trusted that the Dr’s would never allow something to be given to my baby if it could harm them in anyway. And so, without question or much thought, I vaccinated him. Fully, and completely… on schedule. I don’t have the same reaction story as other people do. I don’t remember a super high fever and high pitched screams. Which is why, until recently, I thought MAYBE it had to do with that, but probably not….. just just in case, I wouldn’t vaccinate my other kids. But I do know, that especially after a year, he started to change. I actually started to get concerned about him when he stopped hitting developmental milestones by about 8 months. Before that, he was on track. He Rolled at 4 months, sat at 6. Babbled, tracked, and interacted. I’ve doubted his normality during this stage for many years. Convincing myself that because of his low muscle tone that was diagnosed and obvious, he was ill from birth. But there are a couple of factors that now tell me that wasn’t true. Because I was concerned about him, I had him tested by early start. His Pediatrician told me he was FINE, and that I just needed to put him in the Johnny Jump up more to strengthen his legs. But Early start came and did an evaluation. They tested him on Expressive and Receptive language, Gross motor and fine motor skills. Cognitive functioning, and social emotional functioning. At 11 months he tested NORMAL or ABOVE NORMAL on all these things, EXCEPT Gross Motor. But guess what…… Hannah was the same way. And she is totally fine. Low Muscle tone, but totally fine. Late walker, but totally fine. Having Hannah, and seeing her development, makes me really think he was fine until after a year. Not surprisingly, after he got the MMR Vaccine, that at the time did have Mercury in it, that they later removed. They tell you not to eat Tuna or Fish high in Mercury in pregnancy and then they pump your baby full of it with Vaccines after it’s born but still tiny and fragile. INSANITY! He also started getting constipated after a year. An issue that we would deal with for a very long time. An issue that took our soul and his trust as we shoved suppositories up his butt and held him down for enemas on a weekly basis for years. Another thing I remembered is that I was participating in a “Star is born” program at California Parenting Institute where I took parenting classes. It was a program where I would meet with a parenting specialist who was trained in developmental stages, every 6 weeks. She videoed Ben and I, and we talked about parenting and life and development. She never showed any concerns outside of low muscle tone. Did not direct me to services, did not point to any signs that he was different or disabled. I WISH I still had this VHS…. but it’s gone, and I have no idea where it is. Probably lost in the fire, although it may have been lost before that too.
At about 18 months he was definetly showing signs of language delay, but had about 5 words. Enter another round of vaccines. Those 5 words were gone, not to return for many, many more years. He started having staring spells, and focusing on himself in mirrors and doorknobs instead of interacting with people or playthings. Things just got worse and worse from there. I still vaccinated him. By the time he was 2, and Elijah was born, I started to question vaccines. Elijah got his at 2 months, but then I stopped going to the well baby appointments. I didn’t want to vaccinate him so young, but I figured since Ben was now bigger, he would be fine with more vaccines, (what the heck was I thinking!!) and he was fully vaccinated through school age because I thought he had to be to receive the services that were being offered to him. (Special ed preschool and the like). He got worse and worse. I was kicked out of the Ped’s office I was at for missing so many appointments for Elijah. So we moved to another, they sent the paper copy of his records over to the other office, somehow, in transition,they were lost. All his vaccine records, all the records of his early days….. lost, forever. Could they have been trying to hide something? Perhaps. Perhaps not. We will never know.
As the years went on his signs of disability just grew. We saw so many Dr’s, specialists, therapists, and had so many tests. Genetic tests, MRI’s, Cat Scans, Brain Scan’s…. blood tests….. everything came out NORMAL. NO REASON whatsoever that he should be disabled….. yet he was…… more and more severely every year. When he was 8 the Seizures started. At least the big and obvious ones. We avoided medication for a while, but then they started getting worse, so we started it….. we would try one, and then he would have more seizures, instead of taking that one away, and trying a different one, we would just add more and different kinds. He would do better for a while, and then the seizures would be back, slightly different, but just as scary. So here we are today. 15, still in a diaper. Still having seizures several times a week. Not the happy always smiling boy he once was. Not cuddly and cute, but distant, and sensitive to sound and touch more than ever before. Not able or wanting to be out of the house or his school for any length of time. Not able to take him to church or his brothers baseball games. I blame the seizure meds for that more than anything. But to stop them, would mean major, major seizures, ones that I don’t think any of us could live through. Not Necessarily because the meds are saving his life, but because his body is so dependent on them now, that to take them away, that in itself would make him have huge seizures….. if that makes sense.
For so many years, he didn’t have an Autism Diagnosis, and it was ruled out many times. When the seizures started, they added that to his list of diagnoses. Athetoid Ataxic Cerebral Palsy, Mild Mental Retardation, ADHD, and now….. AUTISM. Because he didn’t have that Autism Diagnosis, I guess I really refused to believe that he was Vaccine injured. Because that was what all the fuss was about, Autism and vaccines. But he didn’t have Autism, so he couldn’t fall into that category. I think that is a gross misrepresentation about what this whole vaccine issues is about. We are talking about Vaccines causing BRAIN INJURY and Auto Immune disorders, sometimes that looks like Autism, sometimes it looks like death, sometimes it looks like ADHD, sometimes it looks like major food allergies, or asthma. Sometimes it looks like Epilepsy, sometimes it looks like Developmental delays, sometimes it looks like all of it together. Because of the SLIGHT possibility that a vaccine could have contributed to his unknown issues, I didn’t vaccinate the other kids. I wasn’t sure, I didn’t REALLY think it caused it, but I didn’t know it DIDN’T…. so I didn’t vaccinate the other kids. But last year, when the state of Ca decided to make a law MANDATING vaccines because there was a supposed “Outbreak” of Measles in Disneyland that no one died of or got seriously sick from…… I started reading. I started studying. I studied the angry articles people would post about how stupid and quacky the Anti-vaxxers were and why. I read the much more scientific and less emotional articles about how in fact vaccines CAN and DO cause brain injury of all kinds. And I read the heart-wrenching, emotional stories of so many parents, who saw their child slip into Vaccine reaction, over and over again. These stories hit me the most. Then I read stories about the CDC and huge studies that proved their WAS NOT a link were falsified and lied about. I asked myself, these parents, what do they have to gain by telling a lie? By making up these stories of extreme reactions, or slow fades into disability and Autism. Nothing. They have nothing to gain. But the pharmaceutical companies who pay for and are back most of the studies trying to prove that their is NO LINK? What do they have to lose if the link was found, millions, and millions of dollars. I don’t believe studies anymore. They mean nothing to me. I believe people. I believe parents. I also started to see our own story in many of the stories I read. And as I go through this, I know more and more everyday…. that BEN WAS INJURED. Harmed, hurt, and disabled by Vaccines, combined with tons of antibiotics. And he even started off at a deficit because of his Cesarean birth. A fact that just came into light a few years ago. Babies born via Cesarean have an unhealthy gut at birth because they do not pass through the birth canal and get the healthy bacteria in their mouth from that. Unhealthy immune system from birth, add the assault of several rounds of antibiotics for ear infections that are now said to not need antibiotics, killing all the healthy flora and immune fighting flora that WAS in there, and then vaccines. Insult to Injury as they say.
So what happened to “Playing it safe”. Doing the Safe thing by having him in the hospital and vaccinating him against ancient diseases with a ton of toxins in them, just in case he came in contact with one of them. Just in case…… For my next three births I planned home births. I didn’t vaccinate. I took the RISKY route. I had a VBAC….. Risk. For Micah and Hannah…. at home… double risk. I didn’t vaccinate them, for the homebirths I didn’t even do Vitimin K. Wow…… good thing they didn’t turn me into CPS for being so RISKY. But guess what……. THOSE BABIES ARE HEALTHY as all get out. Especially Micah and Hannah. The ones I took the GREATEST supposed RISK….. are the strongest and healthiest kids I’ve ever known. They were born SAFE. The remained SAFE and healthy through their early years. Micah has only had antibiotics twice in his life, Hannah never so far.
So when I look back on it all….. and think about the Risk Vs. Benefit of all of these things put in place by RICH Pharmaceutical companies with no possible way of being sued themselves if something went wrong, and hospital based interventions to HELP US……… JUST IN CASE……… I call bull. Not for me. Not for us. The things that I was told were there for my protection, for Ben’s protection, were the very thing that caused his demise. I will be looking at Risk in a whole new light.