Special Needs Mom Freaking Out

The more I dig in, the more I realize how deep and wide the propaganda has been and how it’s almost become an appendage that we cannot get rid of without fundamentally changing who we are. We have been fooled or played or ignorant, however you want to word it, about the nature of reality and the fragility of our systems due to overspecialization, diversification leading to the need to compartmentalize so many aspects of our life in order to function. In the process of our society almost demanding of us that we do this, we’ve developed some bad habits, some disconnects and some dysfunction in the way we are able to do and say things that ultimately make no sense and adopt thoughts and ideas that do not reflect novel or enlightened thinking but more repetition of the status quo with no room for evolution.

I do not know how to get it out. I do not know how everyone can go along and pretend this is not happening. I feel like my heart is breaking and there is a part of my mind that is shadowed and dark as I try to figure out how to go forward. Does it even matter? I am such a little person. I am dependent on a fixed income, other people. I resent the fuck out of this but in order to go forward and try to make sure we all survived or whatever I was doing in the first 50 years of this lifetime, I know am in bondage to systems and individuals and I cannot just get up and walk away. I cannot. I love you all. I also cannot live in this place where everyone thinks I’m on some extreme tangent and am half-crazy anyway and oh poor poor broken Jill….b/c they are so embedded in the narrative they can’t see it. Once you see it it’s hard to unsee it and go back to pretending we’re comfortable. I do not have resources, except within.

I ran far into the fire and existed in cycles of trauma and unconscious behavior and now I am beholden to many. I have tried my best to be responsible and do “the right thing” for my children and in life. Somehow, I could never really be the authority figure that it seems like was required of me to go through the process of separating and moving on with my life as an individual. I feel my soul is tied to my offspring, but it’s getting harder and harder to hold on and ride these waves, and know what I ‘know, remember what I remember. It isn’t credible to anyone really but me. I know what I lived through and how the experiences taught me over and over how broken our systems of care are and how so many people are not giving us the full picture but the picture they are providing carries so much weight that it’s required of us to gaze upon that and not avert our eyes at all to see what else might be helpful.

I let myself be bought ultimately to survive and I bought it hook line and sinker. I dove into the western medicine narrative and scoffed at anything alternative. “What a fuckin joke”, I thought as I got my 5th epidural for my fifth kid. How could anyone consider natural childbirth when the modern way was so much more predictable and clinical? I’d been conditioned to believe it to such a deep degree that I had no idea how far I have drifted from myself. Starting when I was 19 and my mother scheduled an appointment with a gynecologist to get me on birth control before I got married at age 20 to my first serious boyfriend that I did not really love…(I was deep state in evangelical Christianity) but knew I didn’t want to live at home and had to play along with this future/life/career/independence thing. It did not make much sense to me. I was still emotionally an innocent child. However, I thought I could bury the part of me that knew the whole thing was fucked. I would layer on focus on all the roles….housewife, good wife, partner, responsible adult and eventually mother. I did not go into it with the right attitude, education or understanding of the level of responsibility I was passively accepting, and thus the level of my passive aggressive behavior throughout periods of my life is truly deplorable. Hard to forgive.

Anyway, the birth control pills…the first prescription I really ever had. It was a nightmare. I felt different. Everything was different. I couldn’t run well. Running was my currency, my grounding, my saving grace… on birth control, my body was changing. I hated it. Prior to starting this pharmaceutical, I figured out a system to manage my physical reality, within reason. But, I also didn’t want to get pregnant. I was very disciplined yet was able to live a quality of life and had been finally getting my feet under me away from home in college when I felt the pull of having to figure it out and find my way……surrounded by people somewhat like me, who were either selling out a bit, and could adopt the fundamentalist Xian narrative to survive, or far more advanced in understanding the deep truths behind the dogma we were being taught at a young age.

All I know is I had no clue. On birth control, I became severely bulimic, depressed, and finally leaned on alcohol and anti-depressants to get out of this life….a life of constant disagreement and disconnect with my husband, fueled mostly by naivete, pig headedness and deeply wired survival skills that were becoming toxic. I moved on to my next relationship which I thought was the holy grail. I did not know I had to heal myself first. Long story short,  I ended up with 5 children and each child was born not with the planning and hope that seems typical, but more as a way of surviving. Trying to save my first marriage, or something…. And not even trying or planning to have a child, it just happened. And then again. And again. I refused to use birth control pills or hormones b/c I knew the hell that brought on. So I tried other methods but was pretty healthy and fertile and then I needed to have more kids to have some sort of hope. So here I am with 3 of my 5 children that have significant special needs all over the map. I endured a traumatic end to my second marriage that still haunts me to this day. I bargained with the dark side and now I must pay the price.

Circling back to western medicine. When my kids ended up with Tuberous Sclerosis Complex, I became immersed in understanding the “science” of it and learning as much as I could. Despite having 3 children with the diagnosis that I managed to keep alive and are to this day, doing pretty well, I am never given any respect for having figured any of that out. All the endless medications and appointments that ultimately made their diagnoses more complicated and disconnected, all the educational meetings and interventions that were sorely inadequate and lacking in integrating any of the medical or psychological aspects of caring for children into understanding how to possibly see what was needed, no all this is on the parent. It is asking a lot of one parent, but I did my best.

When I realized that it is impossible to maintain educational, medical, behavioral, and spiritual needs of my children without sacrificing every single minute of my day for little gain, I started to let go. I started to question and talk to other parents and realize that it wasn’t just me, but other people too that struggled to manage everything and often questioned themselves if the systems were set up to keep people oppressed and dependent. We whispered about it and lauded the doctors because when you have kids that seize and rage, you will sell your soul right to the devil, on the front lawn of church to stop the horrors. The many many horrors of three-hour seizures and head banging on cement and bloody arms and noses and screaming and tantrums and basic chaos daily. So, you will take the pills gladly and bow at the altar of allopathic medicine, yes please stop these symptoms. Even though I have had renowned neurologists confess to me that it’s all an art form and they are totally guessing much of the time. But at the same time, there’s no room to question or explore or lift one’s head long enough to see that the treatment might be part of the problem for these people with TSC, and all of us, really, in the US.  I am tired of lying about it b/c it feels wrong to stay quiet anymore.

Once I realized the endocannabinoid system was a major physiologic system and was not included in any of the organ based methodological, allopathic medical schools or understanding of medicine, I let go again. I decided once and for all I could not trust the doctors. I would have to figure this out on my own. I would still use them, but I did not believe them when they suggested treatments and medications that I’d done the research on and had realized were very harmful long term. It would be said that I am risking their lives, playing with fire, but I still do not see it that way. When you dose 2 kids every day for 20 years with at least 7 medications, strong medications, and watch them slide into more suffering, more downstream diagnoses, when you yourself were able to save yourself and get off your medications and manage your own health b/c you do not have TSC, it becomes obvious that something is amuck and it becomes exhausting. Basically, you are living in despair if you look too closely and think about the future. As I type, I have a 24 year old daughter in a group home who I haven’t spent more than 30 minutes with literally since March. This is another blog.

So when I got my 19 year old son with TSC to use some cannabis and it made a dramatic impact, once again, I realized that so much of the lack of support within the medical community for this regimen is based on fear of liability issues, fear on the behalf of big pharma. All that support this organ based methodology, fear that they will lose…(money, respect, stature, etc) if people figure out they can put cbd oil in capsules and make their own medicine from plants and don’t need the toxic pills. And there’s also static from educators that also have been brainwashed by leftover reefer madness and know our tumultuous family history and will use that like a machete to sweep the legs out from under a parent like me, by tossing shame and blame and basic “bad mom” agenda my way.

When covid hit I was a bit fearful at first but after time passed and I didn’t really see the intensity of the impact based on how it was blown up on the media – I imagined that bodies would be piling up in the street- I still was very cautious and remained somewhat in belief of the narrative. That is until after I got my son with TSC using cannabis shortly after the first lockdown, and I was able to get him down or off some of his meds. It was like a light turned on, connections being made like never before and I was like, oh shit, this is real, I can’t go back. I have the time and understanding to know where to look for info and who to listen to and how to find information to support my understanding. He is healing. It’s a wandering journey but he has access to his own consciousness, through this rather minor tweak! All these meds, all these regimens, all this fear and dependence on systems of care had kept me trapped and from seeing options and believing little old me with no fancy degrees, no important career, could figure this out and help my own kids.   

Once I realized I could do this, I had to go forward carrying that knowledge that a natural medicine could facilitate this change and so following that knowledge, there’s just no doubt in my mind that COVID-19, is in large part a political and government ploy to get control of the population that is out of control. The very idea that we need a vaccine to get everyone on track when there are other options to take care of ourselves, but they require personal questioning, exploration, and research. Look around you. We are an overweight, out of shape, stressed out nation, who have been taught to seek salvation and direction externally. We are easy prey. Set up a society to be dependent and fearful on a top heavy power structure for a long period of time and we develop a sort of Stockholm Syndrome. Trust me, I know. I lived in a marriage where I woke up with the first thought in my mind being, I hope he has matching socks today, so the day doesn’t start with yelling. I’ve woken up knowing that my daughter would be verbally admonished, and that I had to try and protect her no matter what that meant. And that her father ultimately was also scared as fuck and didn’t know how to deal thus reacted to his own deep-seated fears with anger. I had to follow the narrative and get the help from those who would at least keep our kids alive. I did not have time to think. So I do get people living in fear and what it does to you. Add in a hefty dose of psychiatric meds that were necessary to endure these mind fucks and what do you get? And what came first? You put people with unresolved trauma in a relationship and add on the stress of 4 children, 3 with TSC, there’s bound to be some drama and control thrown around. A bird in a cage that will ultimately be only focused on survival at all costs, not living and growing and thriving. Willing to pay the jailer for a short term solution.

I see it starting to happen now. We are conditioned to feel powerless and afraid over time and soon it becomes a new normal. We lash out when it is questioned b/c we don’t want to look beneath the surface. Even if it does not make sense. The longer it goes on, the worse it gets to the point where it’s almost laughable. Seeing people on the rail trail wearing masks while exercising still triggers me. People wearing masks in their car, at the grocery store.  Muzzled. Eyes darting and looking for anyone who is not following along so they can have a whipping boy. People wear these things like a fucken badge of honor. Reality and science have taken two different paths. The science on masks is unclear enough to warrant a mandate except in very specific situations. The lockdowns which have been criticized even by the WHO, the arbitrator of law lately, has said lockdowns are ineffective. So how is this still even going on? And can anyone but me see that if everyone must be tested multiple times in a week, there are going to be more positives? Has anyone read about the evolution of the PCR test and the fact that it’s creator has said on record that a PCR test should not be used to isolate a virus in this manner? There’s too much room for error and recommendations for setting the test to a certain number of cycles above a threshold leads to exponentially more positive cases. But we’ve disconnected…we hear the news ranting on about more cases more cases and are electrified. It’s uncanny. It’s almost as if we’re addicted to the show.

Except that there are people suffering with COVID-19 and that is not funny. We have what is essentially a bad flu year with a microscope on every bit of minutia related to this year’s special strain. Another wakeup call was learning that the total number of deaths each year for the last five years has NOT been exceeded this year! (see image below) If so many people are dying of covid, wouldn’t the death count be through the roof this year? But it is not. Strangely enough, there are very few flu cases and many people are diagnosed with covid over the phone, without a test, based on symptoms alone. My own daughter had a positive covid test 2 weeks after being exposed and having a few sniffles. 2 weeks later, after feeling fine and living her life, she got a positive test. What the heck? Many deaths are marked as death from covid 19 even if another condition precipitated. We are all over the map in assessing the magnitude of impact. The major group affected by this wild flu is the elderly. I am not being callous, but we need to remember as a collective that people get sick, people get the flu, people die. It is how it goes. We cannot live in such fear of death we will harm ourselves and our quality of lifelong term to attempt to defy this fact. We must focus on what we can do in the here and now to help ourselves b/c my friends, the help is not going to come from the powers that be in the western medical system.

It is imperative that we must learn to help ourselves. Invest in our own physical, mental, emotional, and spiritual health. We do not need anyone telling us how to do this or what to do. We have figure it out for ourselves. We can ask for help and we can look to others who have outcomes that we respect and who are lightworkers to exemplify. There are doctors and scientists out there that are speaking a broader truth. Buddha at the gas pump and all. But we cannot allow government and corporate entities to force treatments on us that are not proven safe and for which there is no good reason to utilize. The fact that my own family has completely followed the mainstream narrative, as have most of my friends, is very very distressing and I have never felt so alone but at the same time known I can’t just shut it off, pretend I don’t see it or know and go on. I must find a way to exist or I must not exist.

I honestly have no idea how to do it and am calling all angels, all spiritual guides, all celestial beings to help. I finally understand a missing piece. And that is natural law. I have been attuned to it since birth, and I cannot ignore it despite my attempts. I have been able to see the futility in the pursuits that provide income and security and which the average person embraces with ease. It never really stuck. My dad taught me early what really matters is our heart and our relationship to the father son and holy spirit, to ourselves our higher being, to truth. So it’s been a complete adventure getting back to the point where I understand now why I couldn’t just fit in. If it went against natural law, I had to be medicated and altered to do it. Pharmaceuticals numbed me, clouded my vision and mind. Plant medicine, while having a psychoactive affect, it does not numb me or bar me from seeing behind the falsity and lies of the house of sand we have built in modern times. I don’t know where this will lead me, how it will lead me, what I will have to give up and leave behind but I fear that if I don’t, I will lose pieces of my soul and will not be able to exist in this physical realm. I am exhausted.

If anyone is interested, I’ve started a group on Telegram to discuss thoughts, feelings, share information and offer encouragement and support: https://t.me/tsctalk

About Jill Woodworth

Mother of 5. Reigning in the chaos of life with my self expressive blogs. Passionate about a new idea every day. Trying find an adequate platform. Embracing life on a day to day basis and raising my children, 3 with TSC. I am an avid runner, and use running and meditation daily to cope with life. Right now, I am helping tsalliance.org recruit Marine Corp Marathon runners for Team TSC. Go Team! Find a cure!
This entry was posted in addiction, autism spectrum disorder, Buddhism, Cannabinoid medicine, cannabis, epilepsy, medical conditions, parenting, recovery, special needs, tuberous sclerosis complex, Wheaton College and tagged , , , , , , , . Bookmark the permalink.

2 Responses to Special Needs Mom Freaking Out

  1. Amy says:

    Amen, Jill. Awesome article! I cried as I read it. You are an incredible woman, human being and mom. I have known you for over 30 years now. You should be proud of the person you have become over these years. I know that I am proud of you and have the deepest respect for you.

    Like

    • Thank you, Amy. It was going out on a limb to publish and I greatly appreciate your support of our path. I know you have had monumental challenges of your own and I am always inspired by your honesty and love for your family. xoxo

      Like

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