Ben’s story… a perspective about Vaccine choice.

Dearest Readers,

IMG_0655If you’re reading this, you’re probably curious on my thoughts on the vaccine law in California. Many people have asked me what  I think, and so I have been forced to think more and more about it. I’m going to be honest, I hate thinking about it. I try not to. If I think too much about the “What if’s,” I might lose my mind. What if I hadn’t vaccinated him, what if I would have gone with the way I was raised and questioned things in the medical field….. what if? What if he would have grown to be a normal boy? What if he didn’t struggle the way he does? What if it was MY FAULT he is the way he is because I BELIEVED that it was safe for EVERYONE?

Many of you grapple with this question of vaccines with the “What if’s,” too.  What if you do vaccinate and your child is injured, what if you don’t and your child get’s sick?  What if someone else unvaccinated kid gets your child sick? I get that. I know that feeling.  But realize I’m coming from a different place than most of you. My child is sick. His life is forever altered.  He will never live alone. He will never poop in the toilet.  He will never have a girlfriend, a real job, a wife, a child, a love of his life.  He will always be severely disabled.  And Jason and I will be taking care of him like this until we are dead and then likely his siblings will take on this role. I’m going to warn you right now. This post is sad.  It’s not happy and positive and wonderful.  If you’re looking for that, read this Blog Post “A Letter to My Special Needs Son“.

So you want to know what I think about the law that says you have to be fully vaccinated without exemption to go to school or daycare? It makes me sad.  And it makes me worried.  I had a choice.  I saw what happened to Ben, starting reading, doing research, and was able to choose differently for my other kids.  I have never told anyone else what to do, and in fact, if someone asks me my feelings on the matter, I make it very clear that it’s a very personal choice and they should never make their decisions based on what I did. They have to choose for themselves.

But now I’m speaking out about our story.  I’m speaking out because people are so angry and hurtful  in their social media and personal comments about those who choose a different vaccine schedule or choose not too.  Every mean and angry article that was posted about people who choose differently, I read it, and it hurt me to the core.  Every time someone ignorantly tells a non- vaccinating parent that she just listens to Jenny McCarthy, or that doctor whose studies were said to be falsified that they are wrong because of these  two things……. or because they are just plain stupid or ignorant or a bad parent…….. I wanted to scream………. IF YOU SPENT ONE DAY IN MY SHOES, IF YOU HAD ANY IDEA OF WHAT OUR LIVES ARE REALLY LIKE WITH BEN, YOU WOULD UNDERSTAND. IF YOU REALLY KNEW HOW HARD IT IS TO LIVE WITH THE “WHAT IF’S” THAT WE AND MANY PARENTS LIKE US LIVE WITH EVERYDAY, YOU WOULD UNDERSTAND!!!   I can promise you, unless you had to do a Masters Thesis on the subject, or are in the medical school, you have not read as many articles, as many studies, as many pages or reports as a Special Needs parent who is left to wonder………WHAT HAPPENED TO MY CHILD? For the record, I didn’t read any Jenny McCarthy books until long after I stopped vaccinating my other kids.  Hardly any of the people I know who chose to delay or stop vaccinating read her stuff.  So I want to give you the opportunity to come into my world for a bit.  Walk in my shoes, and then if you still want to tell me I’m a hippy stupid idiot for not vaccinating my other kids as babies, go ahead.  But first, walk with me…………. and don’t stop till you get to the end.

Before you enter my world, I want to give you a few facts as you read.

Benjamin is the only person in my personal bloodline fully vaccinated on schedule.  My sister, brother, and I were not vaccinated as kids, and my parents had only a few vaccines as kids. After Ben, I stopped vaccinating my kids as babies.  In the last two years I have caught the boys up because I figured their immune systems were healthy enough to take it, and I didn’t want them to be socially ostracized for not being vaccinated.

I have heard from MANY families over the years that have much more detailed and obvious vaccine injury stories than I do.  But they, too, are too scared to speak out because they are too tired, too exhausted from trying to live their lives to deal with being called a loon, or crazy, or stupid, or delusional.  So they keep quiet because they can’t handle the backlash.

MANY families who have one with an Autism Spectrum disorder have others in the family on the spectrum, especially boys. I stopped vaccinating.  My other kids are totally FINE. In fact, they are the healthiest kids I know. When they get sick, they are sick for 24 hours and then it’s gone. They have VERY healthy immune systems, functioning just the way they were designed to.

Ben reacts opposite to MANY medications. If it’s supposed to make him tired, it makes him hyper; if it’s supposed to take away appetite, it increases it.  If it’s supposed to calm him, it makes him insane. I do not think it would be crazy to say that he had an opposite reaction to vaccines as well.

He was born normal. He had no lack of oxygen at birth, even though he was born via Cesarean, his heart rate never went down, only up.  I used to question this, he had low muscle tone when he was a baby. He was tested at 11 months old by North Bay Regional Center because I was concerned about it. He tested totally normal on every test: social, emotional, cognitive, fine motor, expressive and receptive language. The only thing he was delayed in was gross motor skills.  So was Hannah.  She’s now almost 2 and totally on track. He had the classic regression at around 18 months, where he had language and it went away. He started having staring spells that were probably seizures, but we didn’t know that then. All of this started shortly after the MMR vaccine. He did not get an autism diagnosis until he started having grand mal seizures at age 7.

I read many, many articles when the recent measles outbreak happened in Disneyland.  No one died.  No one was even very seriously sick, just a rash and a fever. I read the pro-vaccine, and the anti-vaccine, and the simply “pro-choice”. I found it very interesting that the pro-vaccine ones were mostly emotional, pulling at your heartstrings, and feeling angry and hurt that other people’s choices could affect your own children’s health.

But the anti-vaccine or pro-choice articles were filled with research studies, science, and sound medical facts.  Check it out. It’s fascinating.

So here we go……… take a walk in my shoes. Live my life for a day or two….. and if you still want to call me names and tell me I’m wrong go ahead. But read to the end.

Go to bed with me at night. It’s midnight, you’ve just gotten Ben to bed, you’re exhausted. In fact, you’re angry. You aren’t sure if you’re mad at yourself, at him, at God…. but you’re mad.  He wouldn’t go to sleep again………. despite the Benadryl and Valium and Ativan….. he’s wired. Lay next to the monitor, listening to his every breath as he goes to sleep. Every night, for the rest of your life. You will be listening your big boy breathing in the monitor as you go to sleep till the day you die. Pray there isn’t a power outage or internet failure and you miss a big and dangerous seizure or escape attempt as you sleep. Wake up at 3 a.m. with him as he decides it’s play time, and watch as your husband goes downstairs to sleep on the couch with the monitor because he can KINDA sleep through Ben’s noises and awakeness, but you cannot. Wake him up in the morning and pry off his pee-soaked clothes and decide whether or not his sheets can make it another night, or is it just too smelly to bear. Wipe his butt. Get poop on your fingers, your arms, under your fingernails, sometimes even your face.  Everyday. Several times a day. See him in his 14 year-old manhood. Growing into a man, knowing he will never know the touch of a mate, or the love of a woman.  Grapple with that.  I dare you.

As you prepare him for the day, doing everything for him, and then shovel 5 different kinds of meds into his little body…Hating every one. Wishing with all your heart they weren’t needed. Watch him take a head dive into his cereal bowl with a seizure. Spilling all the milk everywhere, and having to change all his clothes and diapers, and wash his hair. Rush.Try not to cry. Send him off to school. Try to go about your day. Try. Try going to the gym, checking your phone every 5 minutes during your intense workout just in case the school has called to say he has had too many seizures for them to handle. Wonder what he’s doing at school, if he’s happy, or sad, if he likes it or he doesn’t. Is he being abused? Physically? Sexually? You really wouldn’t know, he can’t tell you. Pick him up from school, ask him how his day is, because even if he can’t answer, you just desperately want him to know you CARE!! You’re always ready, always waiting for that breakthrough. Once home, more poop, more diapers, more glaring in-your-face manhood that will never be realized.  He’s bored. Easily. He makes messes everywhere he goes. He rarely wants to even be in the same room as us.  Miss him.  Miss what he could have been. Wonder. Wonder what he could have been. Don’t sit down for more than 5 minutes at a time when he’s awake and home.  You never know what he’s getting into, or he may even be trying to leave the house.  Be in a constant state of alert and alarm.  Always. Whether you’re with him or not.

Go to church, without him.  Praise God for healing your brother, your sister, other people’s kids……… and wonder why God isn’t healing Benjamin? Grapple with that. Love and Praise God anyway. It’s not His fault.  It is what it is.

Have your brand new hand soap, spray cleaner, dog shampoo, bubbles, spices or cleanser that you JUST bought opened and dumped out. Laugh as other people just tell you to put a baby lock on the cabinet to keep him out. He’s taller and stronger than me. There is no keeping him out of stuff. And try as I might, I can’t watch him every second.

There’s a BBQ tonight for Elijah’s baseball team…… you weren’t able to get care. So you have to go without your husband; you can’t be together as a family. Ben can’t or won’t go anywhere these days. Not to the park, not to the baseball games, not to church. Not to a movie, not to Six Flags, not to the pool.  He hates all of it. He’s too big to force to do things anymore. So we split up.  And then the days we do get care, come with us as I introduce our family to new people….. dying inside knowing our whole family is not here, not represented. Newer people in our lives don’t even know Ben. A little piece of me dies every time that happens.

Or come with us as we attempt to go to one of the other kid’s sporting events…Ben will stay in the car, for a while, but then he get’s bored. He gets out, runs around, and then runs back the car. His butt and diaper are hanging out as others look at us scrambling after him in a fury.  People are feeling sorry for us, thinking we are some kind of freaks or heroes. We don’t like people feeling sorry for us. We are not heroes; we are just doing the best we can with what we have been dealt. Grapple with the fact that Jason and I will NEVER be able to go away alone unless we want to go knowing Ben will probably have lot’s of seizures because of the anxiety of us leaving, or not being there.  It’s happened twice already when we tried to leave for one night. We left in the middle of the night both times. I don’t imagine we will ever be able to fly anywhere as a family.

Be embarrassed at the state of your home, because a) you can’t have nice things since Ben pees and poops and pours spices and soap all over everything. He opens things, breaks things, colors on things, spreads stuff out, dumps things out, and just causes disarray everywhere he goes. And PLEASE don’t compare his mess-making to your toddler. He’s not a toddler; he’s 5’3″, 150 lbs. It’s what he likes to do. That, or it’s a coping mechanism for the daily pain he’s probably in. Or b) because you’re so busy cleaning up his messes you don’t get to the deep cleaning stuff like the shower doors and mopping the floor. Don’t let people in. They wouldn’t understand. They don’t know what it’s like.

It’s dinner time now… make him different food because he won’t eat what you make for everyone else. Worry about his health. Worry that he’s dying inside because you really have no idea what’s going on in his body. Hardly ever eating vegetables and pumping him full of INTENSE meds everyday, but he won’t sit for a blood test.  Try, try it with me. Try giving him Valium that works for everyone else, but not for him. He won’t be held down… we can’t test his blood without putting him all the way under, something the hospital doesn’t warrant necessary.  Too much work. He’s just a kid with special needs.

Try watching your child, your first child, whom you love with all your heart, shake and tremble in seizure, fall over, hit his head, foam at the mouth, go purple. Watch all that happen. Then tell me if there was a 1% chance that vaccines caused that, that you would continue to give your other babies those vaccines.

THEN come with me, to doctors in Hayward, Sacramento, Oakland, San Francisco…come with me to expert after expert, test after test over the years….. and hear them with all their schooling and expertise tell me, “We have no idea why Ben is the way he is.” No one in all of his years has been able to give me any kind of clue as to what happened to him. No one except……….. a few off-the- grid doctors who point me to the written inserts in the vaccine packages themselves, that point to possible risks of seizures, brain swelling, autism, death. Sit with me while I pour over article after article that says things like: over 50 people have DIED from the MMR vaccine in the last 12 years…… but NO ONE has died from measles, mumps, or rubella!!!! (in the US). Or that measles and polio were on their way down long before the vaccine, due to other changes like hygiene and antibiotics. I don’t KNOW that vaccines caused Ben to be like he is. But I DON’T KNOW THAT IT DIDN’T!!!!! And either do you.  Most of the studies that say it doesn’t have anything to do with autism are flawed. There have been whistle-blowers coming out left and right saying results were fudged, one way or another.  Whole populations of people were left out of the study because it showed a link. Most of the big studies, the ones that take a lot of money to do, the ones everyone listens to, are FUNDED by the Pharmaceutical companies that stand to lose a lot of money if a link is found.

This is why the new vaccine law makes me sad. I don’t ever tell anyone else what to do with their kids. I don’t share my view because I am too exhausted by my daily life to fight for a cause. Just posting that I had an opinion and I was going to blog about it brought on slew of people trying to fight with me and others about it on my facebook page. I cried all day. I don’t want people to dislike me because of my choices. I love people. I’m just trying to stay afloat here. I’m just trying to be the best I can be for the family that God gave me. I love them. All of them. I’m so thankful. Even with all of these hard things I have listed above….. I have joy. Everyday I have joy and peace and thankfulness. Our lives are so blessed, because of Ben, through Ben, and surrounding Ben. God is our rock, our savior, our everything. Through our Faith in God, we do not despair, we have hope for a future for Ben.  Something beyond the pain and despair of this world. We know Ben’s life is not an accident, and are confident that God is using Ben’s life, regardless of how difficult it is on him and on us, for HIS Glory. However, it does not take away the above facts.

I am confident, that if you were to really spend the time, living my life, walking in my shoes, poop on your arms, pee smell everywhere, fighting, grappling, crying… you wouldn’t DARE tell me I should have vaccinated my other kids. Or that I should not have had the choice not to (or home-school them). And because I’m thankful I had the chance to wait, I am very sad, and angry that there are those who are trying to take the rights away from others. It does NOT seem to be based on science. It seems to be based on money and scare tactics to the general public who don’t really know much at all except the fear in their hearts. I’m sad for my friends’ kids, and especially for my one-day grandkids.

Thank you for taking the time to read this. Now please be soft and loving in your responses. I have cried all the way through writing this. It’s hard for me. I am fragile. I am tired. If you still want to debate, or inform me of how I’m wrong, take a few days. Sit on it, and come back to me after the emotion has worn off. Please. I beg of you. If this post has effected you, and you know someone it would benefit, someone who needs to share it,  please, share away. I love you. I love your supportive, loving comments, and prayers. Thank you again for listening.

This entry was posted in Family.

64 thoughts on “Ben’s story… a perspective about Vaccine choice.

  1. Whew – well said SweetPea. I know anyone who actually takes the time to read this will be touched – and have more compassion for you and all who are dealing with similar issues. You are one strong Mamala and I am proud and blessed to know you.

    • Willow all I can say is wow! Thanks for sharing. I knew some but not all of what it’s like for you on a daily basis with Ben. I totally understand you not wanting to put your opinions on FB. I am the same way. I just don’t feel like dealing with the judgment of others. I love you, Ben and the rest of your family dearly.

    • You are a much stronger person that any of us. I am a chiropractor with two unvaccinated children. I was fortunate enough to hear both sides of the story on the vaccine debate, and choose for myself. Where the problem arises with the public is: 1. fear the media places out there, and 2. I think most people cannot even fathom that our healthcare system could be so corrupt. They want to truly believe that the pediatrician knows what is best and they don’t need to do the research, etc…
      Thank you for posting your story. This is the only way people are going to start researching, and deciding for themselves. Seeing these stories, seeing videos of autistic children, as hard as that may be. Please have some calm knowing that you will change the lives on some of the ones who read this! God bless you and your family.

      • Thank you so much Angela, I could not agree more with your sentiment. Thank you so much for your comment and your support. It really does help! God Bless you!! Love, Willow

  2. Beautiful. Heart wrenching. I hear your heart, your anguish, your guilt, your love, your compassion and your empathy. I would never, ever claim to know how you feel, and I relate to many of the feelings you grapple with vaccinations and health issues. I know our middle son is vaccine damaged, and wonder if it contributed to the autoimmune issues our other two kids have. Thank you for sharing and baring your soul Willow. Much love and respect to you, your family and your beautiful Ben.

    • Not sure why my “Thanks Mom” Comment went here. LOL. Thanks April. Your love and support has always meant the world to me. You always make me feel so warm, safe, and loved. Just like a great doula should. 🙂

      Thanks also for sharing your questions about your kids!

  3. Willow your transparency and openness is astounding and inspirational. Thank you for this gift of candid honesty. I respect and look up to you very much. You walked me through bringing forth one of my children! I will cherish you alway for that. Your family will always be in my prayers, as I am sure mine is in yours. So much love to you ❤️

    • Love you Veronica. Thank you for your love and support. xoxox I love you and your beautiful family!

  4. Bless you and your whole family. So glad to know you and call you our close friends. May God continue to strengthen you through this struggle. Thank you for sharing. We love you. – The Swains

  5. This made me weep. I have walked in your shoes – not exactly – but enough. Thank you for putting this into words and sharing. I can’t imagine how difficult it was. I’m grateful that God had us meet and that you are a sister in Christ.

    • Yes Jennifer, I know. Thank you, I’m grateful to God that I have met you as well. 🙂 Love,

  6. Thank you for sharing the reason behind your decision. It really did help me to have more compassion for those who make this choice. Blessings to you and your family.

    • Thank you so much! That was really my whole goal in writing it. Compassion is all I ask!

  7. Dear Willow, I was very touched by your post. I don’t know you but have great empathy for. You are carrying a burden greater than anyone deserves. The former pastor of my church also has a severely autistic son and we as a comgregation watched as he matured from a 9 year old child to teenager taller and heavier than his parents. It seems impossible that he can remain at home with them if they are to continue with their own lives. I have no answers for what seems a growing problem not just to families facing this problem but also to the medical community and lawmakers and the world in general. To me it sounds as if you need more outside help, but I’m sure that is very hard to find. I wish you strength and will pray that your family and you learn to deal with this extremely difficult problem. God bless you all and bring you peace. Shalom. Margaret

    • Thank you so much for your comment Margaret. We get along pretty well considering. Yes it’s hard, but we have learned to live with it, move with it. I was just very honest about how it looks in order to show why I might make the choices I made.. But your prayers are coveted and appreciated. xoxox

  8. I am so proud to have you as a granddaughter in law… I love you very much.. I have not had to walk in your shoes… and doubt that I would be able to… I can only pray that you have the strength and resources to prevail… I know you have strong people around you….. and may God bless you all…

    • Thank you Grandma for your unending love and support of me. I’m so thankful to have you as my Grandma in law. Even though we have spent very little physical time together, in many ways, I am closer to you then any of my real grandparents! I love you so much.
      Love, Willow

  9. Dear Willow –
    Thank you so much for sharing your heart with us. We are Blessed to hear your TRUTH. Please know that you are loved and held in my heart. You are Warriors of great distinction in this world where it would be easier to dismiss your pain and that of your beloved family. I hold you in my heart with deep LOVE and hope that your lives will become easier in time. Your bravery and your fortitude are matched by very few and in that, take your place as essential in our world today. I feel your pain and I hear you cry out, knowing this may be as good as it gets for Ben and for all who are involved in his daily care. God bless you ALL, Dear Willow. Sharing your story has touched and opened my heart as I know it will for many who are brave enough to read your blog. Don’t stop sharing. Maybe we can hold some of your pain for you as you continue to navigate this life.

  10. I’m reaching out as a therapist and parent. Reserach has been extensively done to show that Neurofeedback can reduce seizures and calm the brain. Brain stabilization may give a window of relief.

    • Thank you Lisa,

      We have never tried that, we tire of trying therapy’s……. costs money we don’t have, on top of time we don’t have, to usually see very minimal results. If someone were to offer it up for free, I would probably try it. But outside of that…… it just doesn’t seem worth it. We have tried many things over the years.. Love, Willow

  11. You describe my family and my life with my daughter to a T, with the exception of the seizures, which I suspect she has anyhow, it has just never been confirmed because she doesn’t hold still long enough for an EEG. I feel the same. It hurts. She has many things medically wrong with her but doctors always use the autism excuse for anything she does, plus like your son, not only does she react strangely to different medications, but she also never tests out as having anything medically wrong with her. She does not test out officially allergic to wheat, dairy, soy, corn, or cane sugar, but all of the above cause definite reactions and issues for her. She also did not test out as having diabetes insipidus even though she has all the symptoms and has responded well to the medication to treat THAT. I feel the same way when one of us has to stay home with her due to a scout function that she likely won’t be able to handle. That hurts the worst. She should be in Girl Scouts just like her sisters are, not living like this. I had dreams of being able to introduce our whole family to people as well (I have five other children) and when my husband is at scouts with the other kids and I’m home with her because it’s just too hard to take her, I feel so broken and sad, even years later, even though like you said, it is what it is. I dreamed of having a whole passel of children and introducing them all to people, now we are constantly splitting up as parents so that my other children can do “normal” things that she cannot. I really wish people would just shut up and be grateful they don’t know what this is like. Same here, I didn’t make my decisions based on anything Jenny McCarthy or even Andrew Wakefield said. That’s another thing, I’m a bit tired of people ASSuming they know why or how you came to the conclusion you did.

  12. Oh, I also want to add, I have a close relative who is a polio survivor, who has actually led a full life and done many things that my daughter will NEVER get to do (get married, have children, have a career, travel the world), plus I have had many intelligent conversations with this relative and have never ONCE had a real conversation with my daughter, and yet I have actually had people say to me that even if vaccines cause autism, that I should just be grateful because “autism is better than polio”. I feel so hurt sometimes that back when polio was happening to children people wanted to stop that, but so many more children have autism than ever got polio, and the medical community doesn’t care or want to stop that, in fact, when autism is talked about in the media, it is always the quirky, cute high-functioning children. Children like my daughter and your son are always overlooked and downplayed because people want a feel-good story. No one wants to look honestly at this crisis or how horrible it truly is.

    • Yes!! I would trade Polio or getting sick with Measles or whatever for what Ben has! The only thing I wouldn’t trade it with is death! Thank you for sharing. I know you feel me, and I feel you too. Having a larger family like me, it’s so hard to manage. But the blessing is our special child has siblings to care for him when we are gone. When you said, “I really wish people would just shut up and be grateful they don’t know what this is like.” Yes. Sometimes I just feel like screaming, “I’m so glad your child wasn’t hurt by vaccines, and you can rest at night knowing that………… I Can’t! I DON’T know what happened to him! The only inkling of a clue I have is Vaccines. Whatever it was……. something happened. And no one seems to care to find out what. For the “Greater Good”. That whole word infuriates me. Come spend a day with me, or with you, and then tell me if you really care about “the greater good” when it comes to your other children. Thank you for your comments, I will be praying for your family. Love, Willow

      • There’s no logic in risking a lifetime of autism for a week’s worth of discomfort; most polio symptoms were mild. And the real jab? The polio vaccine CAUSED most cases of polio in the 1950s (excerpt from article at

        Doctors and scientists on the staff of the National Institutes of Health during the 1950s were well aware that the Salk vaccine was causing polio. Some frankly stated that it was “worthless as a preventive and dangerous to take” They refused to vaccinate their own children. Health departments banned the inoculations. Even Salk himself was quoted as saying: “When you inoculate children with a polio vaccine you don’t sleep well for two or three weeks” But the National Foundation for Infantile Paralysis, and drug companies with large investments in the vaccine coerced the U.S. Public Health Service into falsely proclaiming the vaccine was safe  and  effective .

        Is there anything more tragically ridiculous, criminal and medially unethical in the world of children’s health?

  13. dear willow,
    your thoughtful and painful and truthful and life-full story/words have me weeping.
    back in the early ’70’s i was finishing up my degree in special education. i worked at a school for mentally handicapped children (500 children, all ages). of the entire school population, there was only 1 autistic child (and he was not diagnosed as such).
    since that time (a short 40 years), something has gone completely awry, and now its 1 in 20 children…these vaccines are not for everyone, and just might not be fit for anyone.
    after working with handicapped children, i started researching everything nutrition and the body-workings. we have come along way since the late ’70’s in our knowledge of nutrition/health.
    have you looked into the ketogenic diet. it has helped with seizures…completely arresting them. i have so much information that i would be happy to share.
    i love who you are and with stories like yours, there is no way that forced vaccines will be the law-of-the-land…not with feisty grandma’s like me!! love to you sweet sweet willow

    • Thank you Wendy! Yes, we actually did two years of the Modified Atkis diet which is similar to the high fat low carb ketogenic diet, it helped a lot for a while, and then the seizurs started coming back. It was so much work as Ben is a super picky eater anyway, that we gave up on it. It was so hard having three other children to constantly tell him no to sugar and bread and fruit. Would have kept at it if it was still helping a lot, but it wasn’t. Thank you so much for your response. It truly blessed me. Love, Willow

  14. I have a similar 14 year old, but he has been seizure-free for the last 9 years and did not regress. He never talked. Everything else is for the most part, spot on. My son loves to rip up books and takes pictures off the walls. I would gladly trade a temporary illness over severe autism any time. Severe autism hurts. I get hit, nail-dug, pinched, scratched, and my hair pulled multiple times a day. Every once in awhile when I am not on my toes, I get bit. Unless you live it, you just can’t imagine. I am not strong or an incredible person. I do what I do because I have no choice. If it were a job, I would have quit the first day.

    • And that’s just it………… I would rather trade a temporary illness over severe autism anyday. Yes. I’m so sorry for the pain you endure. I do have to say, we are blessed to not have to deal with that. Ben is not violent in anyway, and for that, I am extremely thankful. Yes, we don’t do it because we are strong or incredible. I think it just helps other people to say that, because they don’t know how else to react. I will be praying for you. Blessings, Willow

      • “I would rather trade a temporary illness over severe autism anyday.”

        Maybe that’s what YOU choose for your family, but you shouldn’t be allowed to make that choice for mine. And every time your unvaccinated children are out in public, they are a risk to mine who are too young and sick to be vaccinated. If they got sick, it wouldn’t be a mild, 24-hour bug. It could be death. So even if there was a link between vaccines and autism (there isn’t), would you choose autism over death?

        • I would not describe my son as purely “Autistic” he is severely disabled in many ways, that look most like brain injury. And although the studies that that say “Autism” is not linked to vaccines, there are a ton of studies and won lawsuits that clearly show their is a clear link to vaccine injury from many of these vaccines. I’m not sure his life is better then death, but since he is here, I would never wish that apon him. By not vaccinating my other kids, I realize I was taking the risk of them having a higher chance of getting these diseases. I had to weigh the risk of them being vaccine injured, (including death) or having a higher chance of them getting the disease. I chose the latter. Did you know there have been almost over 60 deaths from the MMR VACCINE in the same time that their has been ONLY 1 death from Measles mumps or Rubella? This is since 2003. This is on the CDC website and on the VAERS website. So for me, the way I look at the research and science, I am actually choosing the option where my kids are LESS likely to die. You made your choice, and I made mine. Check out this website Blessings to you. Willow Sanders

  15. I read your story, felt your pain & totally related to you, for I am a parent of two vaccine injured children. Then I got to the part where you say, “In the last two years I have caught the boys up because I figured their immune systems were healthy enough to take it, and I didn’t want them to be socially ostracized for not being vaccinated.”

    When my now 24 year old, completely unvaccinated daughter was in middle school, her class was being vaccinated for Hep B. She came in crying & was very upset, saying, “I want to take it & be like the other kids! I don’t want to be different!”

    But you know what?? We ARE different. We are NOT going to set our children on fire to keep others warm & I spelled this out to her. I told her, we have TWO injured children out of THREE & how precious she is to me. That she can be like her friends all she wants, in every way except that. I called her school & also sent them a fax, saying if ANYONE came near her with that vaccine, they’d be hearing from my lawyers.

    These are OUR children. they are OUR responsibility & it is OUR right to keep them safe. No one else’s.

    I lost my interest in your story when you made that statement. Not to be harsh, but you need to teach your children to STAND UP for their rights. You don’t teach them to bow down & take it. 🙁

    I’m 51 & we had so few vaccines when we were children. We HAD the normal childhood diseases that everyone is so terrified of today. We survived it just fine. I probably had only maybe 8 vaccines in total, yet my immune system, in spite of my taking immaculate care of myself, is messed up. I have 3 autoimmune illnesses & one is potentially fatal. If you really HAVE done your due diligence you would refuse to vaccinate your children at any age!

    • Dee, your comment is very harsh, and you truly don’t know what is best for this writer’s children.

      • Thank you. 🙂 I responded to her. With all of the amazing support I have received, her comment did not hurt me. It does make me sad though. Thanks for sticking up for me! 🙂

    • Dearest Dee, I’m sorry you lost interest in my post. It’s okay, I didn’t write it for your interest. I wrote it to tell our story. I am assuming you did not finish reading it? If you did, I’m sure you would not have said such mean things to me. I’m sad that the only negative reaction I have gotten from my post thus far is yours. Someone who I really wrote this FOR. I wrote it for you. So others would understand a little more why a parent of a vaccine injured child would choose differently for her other children. I personally make decisions for my family based on the perceived benefits vs risks, with all of the information available to me, with the best of my ability. I do not make decisions based on “Principal”. I went ahead and vaccinated my older boys when they were 7 and 10, with only a few vaccines, since you don’t really need many you are that age to “Catch up”. Never more then one at a time. And not all of them. I did it confident that their years of being un-vaccinated, contracting and fighting many small illnesses and very few antibiotics over the years, left their strong immune systems healthy enough to handle the vaccine. I had some Vaccines in middle school as well so I could stay in school during some outbreaks. I was fine then, and I knew my boys would be fine. And guess what? They were!! I’m not teaching them to bow down to anything. But to make health decisions based on good solid information and smart decision making skills, not to not do something “based on principal”, or to do something “Just because”. We actually talked about it together and weighted the benefits vs risks and together decided to go ahead with it. I’m sorry your family is still hurting from this. And I wish you nothing but the best in your life as you raise your children the way you want to. I would appreciate the same respect from you. Best wishes, Willow Sanders

  16. Willow,
    I have only known you and Jason for a very short time. I had heard mention of your son Ben but never knew the story. I cried through your entire story and do so this very moment but want you to know how much I admire the both of you for your courage and perseverance in living one day at a time and dealing with not only the every day tasks but an over the top challenge of Ben’s special needs. I pray that God has mercy on you and Ben and that He leads you to an answer that will bless all of your family. God bless you for your strength.

    • Thank you for your kind and loving response. God DOES indeed have great Mercy and Blessings on us daily. We are blessed beyond measure with many things. Love you!

  17. Thank you for sharing your heart-rending story. I cannot imagine what it must be like for you & will pray for you and your family. I am thankful that you have the Lord to support you. Have you ever heard of CEASE therapy. It is a branch of homeopathy pioneered by Tinus Smits, aimed at Autism Spectrum Disorder, & can be helpful when vaccine damage is part or all of the cause. Might be worth looking at, if you haven’t already.

    • Thank you Neil, we have done sequential homeopathy in the past. It’s one of the many therapy’s we have tried, seemed to help in the beginning, but after a while it was not a noticeable enough difference to keep doing it.

  18. Oh Willow… I’m bawling my eyes out. Thank you for being so vulnerable to share your/Ben’s life with the world. I have gotten glimpses from you in the past but this flings the shutters open for everybody. I love you. And Ben is SO LUCKY TO HAVE YOU FOR HIS MOTHER. He’s a beautiful boy.

    • Thanks Ruthie. I didn’t mean to make you bawl your eyes out! But thank you for your words of encouragement. xoxox

  19. Oh hon, your amazing! Standing beside you, holding your hand, I get it…… Love to your entire family!

  20. Thank you so much for speaking out! So eloquently and from the heart and with such intelligence too!

    We are told that serious vaccine injuries are only “one in a million”. As there are a bit less than 319 million people in the U.S. that would mean only 319 serious vaccine injuries nationwide. Yet VAERS shows over 67,000 reports of serious vaccine injury – even though many injuries are not identified and reported. And I’m sure that I myself have heard thousands of accounts. Vaccines have potential benefits but also potential risks. These risks must be much better understood for the sake of prevention and treatment, instead of being swept under the rug, and we must have a choice. CA law SB277 is an outrage.

    All the very best to you and your family. I’m so sorry for how hard this is and admire you for the daily work that you do and how you continue to have faith and love. Our family shares some of these issues but to a much lesser degree. Thankfully our son outgrew behaviors such as paper tearing and poop smearing, and does not have seizures nor insomnia. My hat’s off to you and I hope that you can somehow find space for a bit of rest, relaxation, and recreation which we all need so much.

    • Thank you so much! We do find time for rest and recreation here and there, thank you so much for your words or encouragement! Blessings to you and your family. Love, Willow

  21. I didn’t know your story Willow. Thank you for sharing. I DO know someone that would probably benefit from reading this. Sending you BIG love mama <3 YOU. ARE. AMAZING. I love you! PS have we even met?! PPS I STILL owe you fliers! 😉 Love you love you love you. <3 Brave. Soulfull. Mama.

  22. Oh, Mama. So strong and dedicated and loyal and loving. You are an inspiration. I hope your other children see that or will see that in the future.

    Every day, I am grateful. I have a 2 year old son whom I stopped vaccinating at 3 months. I put off his 2 month vaccinations as long as I could and selectively vaxxed when we did have it done. I never felt right about it. After Hep B at birth and the few he got at 3 months, I saw changes. He got a few patches of eczema. He screamed. All. the. time. Hours and hours of screaming. People told me it was colic. It was not colic. And he had gastro issues, so much so that we saw a pediatric gastroenterologist. I hated taking him in public because he might have a screaming fit. I was scared constantly. And then I started researching. And then I took a stand. It has not been a popular stand with my husband, but he has been way more understanding than a lot of people. My son is a wonder now. He still has gastro issues, but he is healthy and smart and so much fun. I know, though … I am absolutely convinced that had we vaccinated him on schedule with the combo shots and the single shots and multiple jabs in both legs when he still weighed under 40 pounds … I know he would have been different.

    I stand with you and other parents of vaccine injured kids and young adults. I support your decisions and fight for you. I try to educate others about vaccines and the hardships of having a child with severe autism. I wish I could make it better. I wish someone (other than a few doctors who operate very very quietly) would just ask WHY? Find out what causes it and FFS, STOP IT. (I feel the same way about the environment – another factor that likely contributes to rates of autism and GBS and MS and allergies and asthma and on and on and on.)

    I’m sure you get tons of unsolicited advice, but here’s some more: If you haven’t already, check into cannabis oil. It is doing amazing things for others who suffer seizures (and cancer and GBS and MS and Parkinson’s …).

    All the best to you and your family, <3

  23. I am so sorry for what you are living through and I am hoping for the day when there is acknowledgement of what has happened to Ben and children like him. It’s amazing how you try to warn people that vaccines are Russian roulette, and any shot can land a child in this nightmare life you are living with your son. I don’t read the bloggers who are pro-vaccine in a hostile way. Sometimes I wake up at night and I think about this vaccine battle. It’s a kind of obsession. I wonder if one day being unvaccinated with be a kind of elite thing—then will the unvaccinated forget humility, forget to sympathize with the suffering vaccinated. I hope not. I hope we are better than that. But that day will come, too. Thank you for sharing your story.

  24. Finally! A true, the-way-it-is autism story. It really is annoying when the only public face people see of autism is a kid singing with Katy Perry.

    We are sisters in suffering Willow, in a club we never wanted to join. Our daily lives are the same as yours, minus the seizures but add in a heaping helping of chronic self-injurious behavior. My daughter hits herself over 500 times an hour. Nothing can change her behavior. She now has cataracts in both eyes at 12 years old. She was vaccinated n China, where we adopted her from, then again in the states because our arrogant American pediatrician didn’t recognize her health records and wanted to “start from scratch”. She had tonsillitis, a fever and was malnourished, weighing only 14 pounds at 13 months old when she got her shots.

    My heart bleeds for you. It is impossible to explain to folks what parents of severely affected kids with autism must endure DAILY…for a lifetime. It is beyond the grasp of even doctors, teachers, social workers, friends, and family to wrap their minds around the hellish recurring nightmare that is everyday life. I have heard my daughters bones hitting bone tens of thousands of times…it never gets easier and I’m pretty certain my comfortably numb state is masking post-traumatic stress disorder.

    As with most parents, we, too, have tried everything. The poster above suggested cannabis and I heartily agree. My daughter stopped vocal tics and involuntary muscle spasms (tardive dyskinesia from Risperdal) on this treatment, with significant mood enhancement. She also ate like a starving triceratops. It will definitely improve your son’s appetite to where he might get the nourishment he needs to improve. I also wonder if you have looked into IHSS (in-home support services) through your North Bay Regional Services…? It is an excellent county/state program whereby a parent gets paid as a “domestic care worker”, and it can be for your own child. This gives you the freedom to not work outside the home but collect a great income (rates are quite high in Sonoma County, if that’s where you live). Pleas email me if I can provide more info or to just chat.

    Blessings and Hugs to you and your family!

  25. God bless You all Willow.
    We went through early regression from a very early smallpox vaccination. I never even thought about it as it was 1968. I should have thought about how I was always uncomfortable as a kid after being vaccinated. Never crossed my mind.
    What I want to tell You about is the Institutes for the Achievement of Human Potential whose program of patterning we started when our daughter was 4 yrs. 7 months. It was a lot of work and a lot of wonderful volunteers who helped us, and it worked.
    If You want to know more about it and our experience, You (or anyone else reading this) can email me at
    Love to You and your whole family,

  26. You brave and beautiful lady, what a courageous post this was. I am also the mother of a vaccine-injured child, and every word on here brought tears of recognition and understanding to my eyes. Your compassion and grace are an inspiration. Bless you for having the courage to share your story.

  27. I was directed here via Age of Autism, and your story has affected me deeply. This topic is my biggest passion and very few people understand me.

    I have two children, age 5 and almost 3. I was incredibly lucky, and heard the information before they were born. My daughter had a dose of a combo vaccine at 2 months. I decided selective wasn’t for me and she and my son have had none since.

    They are perfectly healthy. I think about how lucky I am but how tragic it is that so many have suffered and continue to. As grateful as I am to have heard stories like yours, I’m devastated they had to happen at all.

    Bless you and your family.

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