There are two things about my morals, acquired over my life, that’ve made me very uncomfortable with myself. It used to be I could simply assert I’m pro-choice, and not need to think further than the assertion. It also used to be that I could simply assert I was pro-vax because it was the “smart thing” to be.
And then both of those things were forced decidedly the opposite direction.
Having to fight for fair medical care for my daughter born having disabilities made me pro-life because that’s the politics that supported my choice to have her in my life. That’s when I learned to respect life. Having to face that my son did have physical reactions when he received vaccines made me more and more pro-health. In addition to everything I learned in order to help my daughter live, I then learned even more about natural health to also support my son’s allergy needs.
Having to change my worldview from the label of “Science! Evidence Based” to ” ‘Yee-Haw Pseudoscience Anti-Science Freak’ That’s Actually Science-Led Outside The Box” was not my favorite thing to do. But how’s it said? The definition of insanity is to repeat something expecting different results. So when it was that my children were on their paths of failing health trends, I had to reconsider my approaches. Which led to re-evaluating the very foundations of what I ever knew.
But I’ll also say, following my “mother’s intuition” led to to learning health from an emotionally intelligent, bottom-up, building blocks approach as opposed to continuing a primarily top-down symptoms approach that doesn’t seek root cause. And I finally felt freedom, because it offered the possibility and hope that I was told couldn’t exist.
I was on Facebook one day, because of course I was. A young member of my extended family posted the following meme:
A second older family member commented on the OP’s (Original Poster) post with what I saw as an argument-provoking pro-life response with a more aggressive approach. I saw him get torn into by the OP’s friends, and I could understand that. Until their insistence on their view got more aggressive and pricked feelings I had regarding my losses.
In the re-share, OP had commented “600,000 clumps of cells***” which is what started it.
To address both things, I unwisely chose to leave what I thought so my young family member would have a different perspective that might perhaps shed more light on the topic since I have, actually, experienced both sides of the matter.
And then a different friend of the OP chose to argue with me, and now this blogpost exists to mark the need that self-proclaimed pro-choice individuals might find use of… Before they seek to insist that feelings like mine are “close minded” when they are simply feelings that I’ve lived. A perspective, not rote.
However, I’d forgotten the ignorance of youth and its inability to grasp complex subjects from a more objective place. Maybe college will train it in that individual, but that took me until grad school level papers to achieve. Reading comprehension, much less compassion for others, might be right out. As with most things, I was reminded not to waste my breath. (But I’m a writer, so wasted breath is kind of my butter and bread. Oh well.)
But I was quite baffled in the direction of someone who was very insistent that people don’t exist in people form before they’re born. Very strange. Of which discussion went on far longer than I thought it could.
The Abortion Argument
ME: I was just thinking that it might be helpful for a pro-choice special needs parent to describe a perspective. It’s not going to be what anyone wants to hear, but here goes. Not meant to be forceful, but I felt it might be useful to share the thoughts I’ve had.
Whether or not someone chooses to have a baby doesn’t make a fetus any less of a baby. Every fetus is expelled, whether by intervention or survival. While I have heard of much regret for guilt when women abort, I’ve never heard a woman regret seeing a pregnancy/terminal birth through to its full closure; it’s one comfort among those belonging to my rare trisomy community. These days I think it’s equally possible to recognize that choice is AS important as recognizing and acknowledging life; whether by choice or by circumstance, an entire potential future can be gone. It’s a hope and responsibility that should be respected as much as keeping a baby is, and as adequately supporting growth and development should be.
If I had a dime for every time my daughter was called “It” or treated like she can’t feel pain, or that I was wrong to be pregnant with her, that special needs children “aren’t worth the energy” (according to her NICU Attending, multiple genetic counselors, and at least one other parent who said “her kind” hold back “normal kids” in school), or whatever, I’d be at least a bit richer than I am now. And the six miscarriages I’ve had, the difference between them was length of gestation for sure. The early losses, easy come easy go. Those suck, but they don’t get… personal. Losing my son at 17w, and my baby after that at 10w a few months later, those get personal. Seeing what came when I delivered them, that’s personal. They were kicks that were living. And then they weren’t. And it’s okay to acknowledge it. A clump of cells does not deliver with fully articulated hands and feet.
What prenatal testing is more about is psychology, than it is needing to know. I would say it’s likewise for abortion.
HER: you can’t use your own experiences as a reason to say that everybody else is wrong, because they have different experiences than you do. There are plenty of women out there who do not have the means to take care of a baby or even just don’t want to, because having a baby you don’t want is psychology traumatizing. Your experiences are valid but you can’t claim to know what’s best for all women who are faced with an unwanted pregnancy.
ME: You’ll notice: I said “A perspective”, and I said what type. It’s just very myopic to present one and not hear another because it’s “not all women”. Neither is the other. My share underlines your point. And had [Other Comment] not picked a pro-life argument, I would not have offered a pro-choice alternative view.
Did I *say* that I claim to know what’s best? Did I *say* everybody else is wrong? Do not put words in my mouth. What I said is that “this has been my observation” based on what I’ve seen across the board of a support group *dealing with terminal diagnoses*.
As *I* have dealt with having a child with a terminal diagnosis. Which does give me a unique perspective on choice *and* life. And I have lost babies. And it’s true, you can take that and create the rest of the argument [Other Comment] started, but that wasn’t my intent. And I was clear about that at the beginning.
You can “validate, BUT” me when you have a more constructive response that isn’t so dismissive.
HER: and I’m saying that this post had nothing to do with miscarriages or special needs testing or terminal pregnancies/birth, but you sat and wrote a long comment about it anyways. You keep stating that you are pro-choice but your attitude about abortions says the opposite, not to mention a fetus is not a baby and preaching about how important life is and how you’ve “never heard a woman regret seeing a pregnancy/terminal birth through” is just meant to shame any woman who chooses an abortion, hence why I commented back to you, because I don’t find that acceptable for somebody who says they are pro-choice.
ME: I weighed in so [Other Comment’s] provocation wasn’t all by itself. I noticed he was getting blowback, and felt that perhaps a different point of view would be helpful for understanding. Obviously, I was mistaken. On which note, you now continue to try to argue with me. I don’t get it.
It’s not meant to shame a woman who chooses abortion. In the terminal group, if they choose to terminate, it’s their choice. I will put forth, there are other support groups that aren’t so understanding, and their reputations do precede them. And in that group, I truly have not seen regret among those who go through with the diagnosis. The regret comes from “what could’ve beens”. I’m not even saying I actively support that, but as it is the path I chose it is one I understand.
I am allowed to have a pro-life belief system for myself and a pro-choice belief system concerning others. You cannot just slap a label and win, pardon. But I can say pro-choice, because that outweighs the other in which I would pass judgment on others, as you continue to do on me.
But my view is spoken from the corner in which I was told without diagnostic results to abort, that my child is worthless, and I have been treated that way all along. I could say “By pro-choice doctors, woe is me!” but that would be inaccurate. The diagnosis I’ve had to deal with is simply “incompatible with living” in medical literature.
And I do repeat and maintain, a fetus is a baby. A clump of cells would be a mush. A baby can kick before it is delivered. Just because it cannot be seen but on ultrasound does not make it not exist as a person. People do not exist in the uterus as balls of amoeba that suddenly become people-shaped when they’re born. Do we call puppies “litter of fetuses” before those are born? Many women name their babies before they’re born. And if we’re talking “only after its first breath”, then please explain how it is that they are oxygenated throughout pregnancy and perform practice breathing? I find it awful ignorant that this is the hill you are trying to stand on with me. I would not grieve a clump of cells.
HER: the baby is oxygenated through the mother, and whether it is a clump of cells or already developing, it does not matter because it is not a baby until it takes it’s first breath, and it is neither of our businesses to say what a woman does with her pregnancy. But you’re only listening to yourself talk at this point so I’m not going to give you the attention you clearly desire anymore.
ME: I’ve been responding to each of your comments as I see them, as thoughtfully as I may. The only person listening to themselves is you insisting that I cannot hold complex points of view or have experienced what I have in my life and it be applicable.
As far as me writing a long comment on a post of a family member, it was for [them] to respond to or not as [they] pleased. Especially considering that no, the post wasn’t about my explanation, but yes, the sliver of commentary that came with the share very much was. Yet you approached me. I hope this discussion has offered the benefit of my experience. If it hasn’t, then one day, one day you’re going to really hurt someone’s feelings, and they won’t be half as nice as me.
It was an interesting day to have my experience of Brennon reduced to a “clump of cells”. He had a face. I knew his kicks. I have his footprints tattooed on my skin. I still remember keenly his delivery, and the emotion of it. He was not a clump of cells.
I feel deeply sorry for people who can’t even for a second do better than to slap a label on a person’s lived experience while refusing to begin to comprehend that they’re talking to another person. They approached me, and I guess I rained on their parade. Was I not, also, psychologically traumatized in having to fight so hard to do right by my children, and in my losses? I hope they never need understand what I tried to convey.
It was not a political choice, but an evolution of my emotions towards the reality of having a child prenatally developing and then born with special needs. I valued her existence; medical professionals, and laypeople worried about kids like her somehow holding back their kids in social contexts, have not.
Simply to respect others’ free will should be default, and in that pro-choice, generally, can be said to excel. But that’s the clinch, right there — and ‘lifing gets it wrong indiscriminately picketing people’s health needs. The reasons women abort are many and aren’t necessary for others to know outside of each their own individual medical care files. But abortion as TFMR (termination for medical reasons) is a reality for myself and others (who are balanced translocation carriers, among other things), on account of the increase of adverse health outcomes, so that was my first time having to self reflect:
- Where did I sit on disabilities?
- What would it take for me to choose to abort as I was repeatedly advised to just do?
- Could I end the life I felt in me? For she kicked plenty and rolled and “sucky-faced” and babies have been shown to urinate and to hear and to dream during gestation.
- The question that really drove me to think harder, Why were they so secure in insisting I end my pregnancy without having diagnostic results in hand? Why didn’t they insist on the testing harder than they did? Or, why should I listen to medical professionals who would insist I not choose my health according to what was right for me?
It was later, outside my BT community and considering my Trisomy community, that I began to see how respect for life really took hold. And I had to self reflect again:
- Having Aubby gave me the choice of “comfort care”, but did starving my newborn of food or supplemental oxygen sit well with me? Is that as humane, ethical as the medical system has already decided?
- I’ve seen multiple cases of hospitals “slow coding” infants because they’re born with disabilities, but is that acceptable for disabled adults?
- Did the prenatal clues I had indicate that the answers her doctors had were infallible?
Because those were my choices, and what all pregnant women must navigate though they just might not encounter it.
The biggest issues the person who picked an argument with me over it had was that I didn’t fit her box on it:
- She could not reconcile me holding both views.
- She could not reconcile acknowledging the *humanity* of a developing fetus.
So I still feel both extremes are wrong in different ways, but in my case I know how/why wrong in a defined way…. for it was pro-life politic that gave me the *choice* to even deliver her. So ‘choicing isn’t so welcoming as people think, particularly in Aubby’s case and my choosing to disagree with medical literature that she wasn’t worth the effort, or things like Simon’s Law wouldn’t exist. Had I had prenatal testing to affirm the doctors’ choice/preferences to not intervene, I wouldn’t have two kids.
What upset me more was the lack of compassion and emotional awareness during the course of that argument. Which leads to my criticism of “belief” systems regarding it. In her words, Aubby was a clump of cells. My stepson in his heyday, clump of cells. Brennon, clump of cells. My living rainbow son Eo, clump of cells. The point at which eggs are fertilized (and become more than clumps of cells similar to that which women menstruate) *begins the process of formation*. Now, I lost Brennon the week following amino, not long before what could have been an anatomy scan 3 weeks later. If he’d made it that far, I’d have been given a death certificate; in our culture, that acknowledges a life was lived. And deliveries as young as 21 weeks have been shown to survive successfully (though zero NICU experiences will ever be a cakewalk, ever).
Overall, I’m just finding the entire concept of “pro” life or “pro” choice hypocritical for both political sides, and devoid of heart for some aspect of child rearing or other on both extremes (abortion rights vs available childcare and resources, etc.). There’s no sense in not acknowledging that a life is, indeed, being lived. Perhaps the care of pregnant and post partum women would improve. The “clump of cells” stage is how pregnancies begin, but ends far before the first trimester is even up. Why else are pregnant women encouraged not to poison the uterine environment, or to stop drinking alcohol and take prenatal vitamins even before trying to conceive?
I’m no less “choice” than before about how I feel and that others are responsible for seeking their most optimal health outcomes. I’ve just had time and reason to think very hard about it. For my part, I just know why I feel it now.
But that’s all to say, everything that anyone who’s followed my medical journey with Aubby? All of that is reality now. And was her potential before she was born. She is no less human now than the shape of her developed into then. The difference in ideologies is the concept of humanity.
And, How Religious Exemptions Begin
This part came following my son’s 2-Year Wellness appointment. 30-something% for height, which the Pediatrician said was “on the short side”. 45% for weight, which made him “proportional”. So I’m guessing now that he’ll be a my hub’s height as opposed to over six feet like my brothers all were.
The Ped didn’t have any comments on how his eczema is, but it wasn’t the worst he’s been. He was having a better eczema day that day. Leading up to the appointment, I’d been pushing minerals and saccharomyces boulardii. Primal Defense wasn’t a good strain for his teefies, so I’d switched to using the single-strain bacteria I had on hand. With vitamins in again, I’ll push them too.
Eo checked out otherwise. Another Speech referral in the system, we’ll see about getting him in with the place Aubby’s seeing now.
Otherwise, in awkward news on it, I asked straight up about vaccine exemptions for them on account of how Eo reacts to Vaseline and corn derivatives, and has multiple “extremely high” anaphylactic results for things, confirmed, and on *three* different occasions, he had BAD (as in screaming all night and making scratched-up ribbons of his skin) eczema from reacting to some ingredient or other in vaccines he received. Aubby wise, I have a metabolic panel showing how she was was with corn derivatives (failing liver), and without (tumor marker decrease, metabolic panel turned around).
Since both my kids are corn intolerant, and all vaccines contain corn derivatives, and I’ve already phased out so much to improve their health, I can do no less in this choice either. Per Shoenfeld 2011 regarding autoimmune/inflammatory syndrome induced by adjuvants, I had my most likely explanation why my kids have such extensive food and chemical allergies. To the effects of vaccine-associated hypersensitivity. I felt I brought a completely reasonable concern to my kids’ Pediatrician, and shouldn’t they advise safety?
The answer I received was in third person point of view. I’d like to let everyone know this is how “religious exemptions” can happen…
I had legitimate reasons for my request regarding my children. Neither child is confirmed immediate-anaphylactic to corn derivatives specifically, but both have extensive allergy lists, both visibly react to corny products. But I can’t get a doctor to hear me out without giving me the “It’s not Autism” and “[Yes, all three] V reactions are just coincidence” talks, nor can I get a doctor to test ingredients used in vaccines for allergy so I can have a direct answer. I can’t get a complete list of allergens tested, either, because they pick a few just to see if it’s a thing, and won’t test non-IgE allergens because it’s “not reliable”. In answer to the allergic history, I was un-pointed not-to-know about the checkbox on school forms indicating religious exemption.
[Cue: my stunned facial expression here.] Okay. Fine. If I have to gaslight myself as they prefer to keep my kids’ health safe, rather than be understood for what I see and they have reacted, then… okay.
Ordinarily, outing my spiritual leanings or talking about my faith isn’t what I like to do, but for purposes of this discussion, I must. I almost want to apologize it’s not Christianity, because that’d probably make more people comfortable… it’d make my aunt happier, anyway. In any case, it’s not Christianity, and I in no way mean what I follow to convert or otherwise offend anyone following my work. My faith is, however, a part of what led to following my gut instincts in the first place. And it’s why I was able to incorporate my own energy work in Aubby’s care during NICU, adding to which I later gained Holy Fire Reiki II certification.
Once upon a time, I began as a baby Wiccan. I steered from it because I don’t structure. I steered further when I started working with angels and other energies, because my perspective is an eclectic view. I steered away when I had to cope with the impact of Atheist beliefs that I eventually had to discard because they broke my brain for four months. But here we are full circle, and the part of my original religious foundation that applies to this matter is “Harm None”. Though I also subscribe to the lesser-known version that is “Harm None… But Take No Sh*t”.
Intentionally putting items that my kids’ bodies have told me Is Not Okay — by having swelling, severe scratching, bleeding every day, allergic intussusceptions, ileus, a long list of food and chemical allergies, neurological/behavioral effects, GI disruption, regressed skills, and I don’t know what else — is harm to them. I was yet again mistaken that a medical professional should/would understand.
In addition, the items in question are usually preserves and additives of some kind, which natural living jives with our spirituality as a family. Earth religion. I can be an even bigger tree hugger. So there’s that too, I guess. As a family we don’t do synthetics, or modify/strictly minimize what few we do, because it’s what turned Aubby’s metabolic panel around. But sure, we’ll feed the crunchy stereotype.
I now hold this new spiritual belief regarding vaccines — based on empirical evidence that I cannot continue to Do Harm when I clearly believe my own eyes, even if others refuse to agree. I know they have eyes, too. I believe they would even agree their sight is equally as functional. I guess I need… religion, Faces put to Universal Energy to back me? A Green Man God and my Mother Goddess Kali to move me to be done with this ridiculousness? I need to claim sanctuary in religion to defend my family’s health? So be it.
Universal Eclectic Wiccan. Medical can choke on it.
Meanwhile, see if I don’t get myself a shiny new silver pendant and Wiccan Rede, Five Points of Wiccan Belief, and Thirteen Goals Of A Witch laminated cards. I forget where I packed my old pendant. It’s been years since I went Incognito. But, fine. I stand by my beliefs, and my Word. If this is how I protect my kids then wear my beliefs on my sleeve I shall.