Thursday, August 11, 2016

Fixing Chariots

Sophie has a wheelchair that we received after about nine months of wrangling with the various agencies and insurance companies. It cost just under $10,000. All the paperwork is in a file that I labeled Sophie's Chariot.  Yesterday, I spent about thirty minutes trying to thread one of the straps back in so that she could be secure. I used tweezers. I fixed the Chariot.

I had an interesting discussion on Facebook the other day on a thread responding to Florida Senator Rubio's assertion that he wouldn't support abortion for those fetuses affected by the Zika virus. Since I've basically weeded out or hidden all my "friends" that have right-wing viewpoints (in the name of sanity during an election year), the comments were predictably liberal-minded with much derision toward Rubio. Given that the man also believes that a fetus should be carried to term even if the woman has been raped or in cases of incest, I was not surprised by his vehement response.  I should make my own assertion here that I am, of course, utterly "pro-choice" and do not believe anyone has the right to tell a woman what to do with her body, including the fetus, should she become pregnant.

Marco Rubio can go f*&k himself before telling me about the sanctity of life.

Where I get squirmy, though, is the talk about aborting children with microcephaly.

This is a post about some squirmy stuff. I don't want to argue and will just present what I'm thinking about when I hear people talk about Zika and microcephaly and abortion, and before there was even knowledge of Zika, these would have been the same thoughts regarding abortion and any sort of disability.

Again, I am decidedly pro-choice and believe unequivocally that it's the woman's right to make decisions regarding her body and that, should she make the decision to have an abortion for whatever reason, she has full and equal access to the procedure with her doctor.

Here are a couple comments from the Facebook thread:

  • So. He's planning on putting through legislation that ensures these children have life-long free medical care, schooling, aides, wheelchairs, dental and all things they will need for the next 50 plus years, RIGHT?
  • In that case, little Marco and the so-called "pro-lifers" should adopt, raise, and continue to support indefinitely each and every one of the severely handicapped children that are born of Zika-infected mothers.

My first thought is how everything -- literally everything -- is reduced to economics -- or how should I say it? -- worth and value. These children, born of women infected with the Zika virus, are not just a great burden to their families but also to society. This kind of reasoning reminds me of how people argue against the death penalty by stating that it's "more expensive to kill people than to house them in jail for a lifetime." Again, I'm just throwing out some of my thoughts here. 

What if we shifted the whole paradigm and asserted the primacy of the vulnerable, how the disabled bring a certain light to the world and evoke the best in the rest of us. I'm not implying that there's a reason for suffering, a plan or some sort of divine imperative. I don't believe in God that way. I believe more in chaos and, perhaps, meaning wrought from it.Sophie is not here to teach me through her seizures and silence, but I am here to learn what it is to truly love.

Here's another comment:

Anybody ever tell these 'interventionists' about the kids that won't be born, because the one they compelled to be born will take the time, energy and finances of the potential kids a couple might have had, were they not over-burdened with the deformed child an abortion could have prevented? Seems to me, there are more potential children condemned to "death" than the fetus the anti-abortionists insist on bringing to term.

Cartoon thought bubble:

Hard as it might be to believe, over the last couple of decades, I've had several people ask me whether I would have aborted Sophie had I known she would have refractory epilepsy and severe developmental disabilities. The hard to believe, for me, is the audacity of the asking, not the answer. I have learned to literally live the questions and not the answers. I have no answers. I've said it before, but I hold opposing thoughts and ideas at once. My hands, you know, are large and strong. When I was pregnant with Henry, I declined an amniocentesis because I already knew that we never know. I was thought a fool by those who advised otherwise. Fools never know. When Sophie was diagnosed, I mourned for what seemed like lifetimes. I mourned the loss of the baby that I thought I had carried and then brought into the world. I thought that she had been replaced by a new baby until I realized that she, Sophie, was always who she was, had been so since spark and stardust and love created her. The mourning never stops, but neither does the love.

Remember hands, how much they carry. It is both terrible burden and incredible honor to care for Sophie. I couldn't do it again and I'd do it again, And not but.


  1. I believe in chaos, too. And in children created by spark and stardust and love.

  2. Yes to all of this. All of it.

  3. Again you've knocked me to my knees. You do this again and again and again and being on my knees is a good place to think about the way I am in awe and in wonder when I consider you, your strong hands, your love.

  4. Elizabeth, this is a squirmy topic and I don't know anyone who addresses it with more thoughtfulness and compassion.
    Amen. xoxoxox

  5. The audacity of the asking. Beyond that, I have no words other than love. xo

  6. You are asking (and not answering) exactly the right questions, as always.

  7. Your words sparkle across the universe illuminating all the dark places of American political rhetoric. In my mind ( from my vantage point on the other side of the world) you make up for everything I've seen on the News today xxx

  8. I think a lot about these same issues but in a somewhat different situation. Should I have given up my daughter to adoption, did my decision lead to her eventual death? Was it my fault, did I give her a better chance? When people tell me it was for the best, it angers me. When they pity me that angers me as well. It is both a terrible burden and an incredible honor to know I decided to bring her into this world. All I can do now is carry the pain and the love hand in hand.
    Thank you Elizabeth for putting it so beautifully. Thanks for putting into such eloquent words what a lot of mothers experience whether living physically with their children, or with children they have lost. Because these feelings never end.
    Thank you.

  9. Though this is about Sophie, it is also a universal truth that the good and bad, light and dark always exist together and cannot be separated. The trick, which you have mastered to a greater or lesser degree, is to hold these opposites in the palms of your hands, and be okay with it. The concept is much too powerful and subtle for many to understand.

  10. You help me see how much I don't know, and how not knowing is the place to begin, and to continue, because there is no sure knowing, ever. Only experience. Only love.

  11. Blown away, once again. It is an honor, I think, to read your words.

  12. I have been a witness to choices women and their families make about bearing or not bearing children. It is not easy. It is not selfish. Women are as important as the children they do or don't have. And of course the rhetoric never addresses who ends up with the messy business of raising that child, whether they are 'normal' or special needs.

    I agree with everything you wrote.

    And it is NO BUSINESS OF YOURS (Feds, politicians, religious institutions, random nut jobs) regarding the choices I or any other woman makes; to conceive, bear, abort, give birth to, raise etc etc. There's plenty of suffering to go around, regardless of the choices we make. Every decision has hopefully been made with thoughtfulness and deliberation, being supported by those that love and care about them.

    You, dear Elizabeth, continue to inspire and provoke. We're counting on you.

    XXX Beth

  13. I'm glad you were able to fix Sophie's Chariot. I'm happy that she finally got the Chariot. I am stunned by some of the comments--all of the comments really.


  14. "....spark and stardust and love created her." Beautiful!

  15. Yes. And when I ask the economic question, this is what I mean: It is hard and expensive to raise any child, despite the fact that children are people and (whether disabled or not) bring a special light to the world, a light that is in an exact hue only belonging to that one person, forever and ever. I don't believe politicians when they say they are pro-life. I believe they know their money and influence will always procure an abortion when one is needed or desired for whatever reason. Their wives, mistresses and daughters will have them. What I think they mean is that people of limited influence and means deserve to be saddled with a huge economic and emotional burden. And I think they mean that because they know poorer, more emotionally burdened people are more likely to make desperate decisions that line rich men's pockets. THEY can afford to take this political stance. They want you, yes you, the author, to pay through the nose in extra insurance premiums, as just one example. While the rest of us who are not rich, and even some of the rich ones, realize that if these men truly cared about the preservation of life they'd institute single payer healthcare, improve conditions and opportunities for working families, back higher wages, fund parental leave, fund public safety nets, mandate comprehensive sex education and access to free and low cost contraception, and end the death penalty. But they don't really care about your daughter's life, or your life. They care about the economics of keeping people in poverty, the new slavery, to fill their corporate and personal coffers. So yeah, it is kind of an economic issue, and raising the issue helps us show their hypocrisy. But when we say it, we don't mean that your daughter is a burden. Your daughter is a responsibility, just like anything of priceless value is, and it brings me joy to know that your family is surviving and thriving, and if there was a way I could help you I would. I would do it through publically funded services that maximize the dollar's power, and are available regardless of your skin color or ethnic background, just because, it takes ALL of America to raise up ALL of America's children, and give them the best lives we can. I ask the economic questions to tear down the excuses, because when your daughter was born, she became a little bit my daughter too, and for MY daughter there should be clean air and food and water, wheelchairs that work really well and protect her health, laws and policies that allow her to be raised in safety and love, even if I was myself not perfect enough to be born rich and male.

  16. This is an excellent and thought-provoking post. People without a disabled child (me included) can never imagine what it's like to have one, and I'm sure we all impose our own viewpoints on the children and families in question without even realizing it. I understand the pro-choice arguments against Rubio's remarks -- like you, I agree with them in principle -- but I can see where they run off the rails sometimes in terms of sensitivity and understanding.

    It's unfortunate that sometimes economic arguments are the only ones people seem to hear. It's one thing to argue that the death penalty is morally wrong, but that's a squishy argument to some people, given that many people have different moral standards. You can't argue against the bottom line, though. So it becomes the default frame for arguing, because it's more objective.

    Bravo on fixing the chariot. I am terrible at mechanical stuff and I can only imagine what a hash I'd make of it.

  17. I mourned the death of Katie as well for a long time, my dream child, the child I never really had but thought I did. I love Katie as she is and she's taught me so much. I think she makes the world a better place, despite the resources it takes to care for her. I'm thankful I live in a society that has those resources are available. I know if she had been born in a third world country she would have died from dehydration likely. She ended up in emerg a few times as a baby with dehydration from vomiting. I am pro choice as well and my choice would be to have her again. That's what choice is. Let me make that choice.

  18. Thank you for writing this, and so eloquently.

  19. Yes. Absolutely. So much of this. The idea that we can legislate decisions that are so personal, that have so many nuances and ripple effects that we cannot (and maybe will not) ever know, is ludicrous. Would that there were more people who believe, as you said, that we are here to learn. Would that there were more people who trusted mothers and fathers to make choices based on their own experiences and understanding and instincts, instead of vilifying them. I am not shocked by the comments that reduce the situation to finances, given the absolute permeation of capitalist ideals in this country, but it does sadden me. That said, I am heartened by the comments of your readers here and by your incredibly articulate thoughts on the matter.

  20. I've been squirmy about this for years. An entire industry exists to warn expecting parents about the "tragedy" of Down syndrome and the test can be done "early and safely" enough to presumably allow them to take care of the issue discretely and avoid unintended loss (via amnio) of healthy babes. I am vehemently pro-choice but when that choice is exercised simply because their baby might resemble my own? Fuck them. I know others have struggled with this and decided education is key - disabusing the masses of the idea that Ds is a tragedy, but there are plenty of People-style/Prom Queen stories already out there, just one google click away. I suspect most people are just assholes.

  21. This may be my very favorite post, ever. Thank you for putting into words what I have felt on the subjects, too.

  22. This is totally true for me. I've made choices not to have babies but when I knew I was choosing a baby I wanted the baby I was "destined" for, the being just as she was and of course testing was not necessary and neither was regret.....
    Lisa Lambert Nicholson



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