A Midterms Voting Guide with Grace Pearl In Mind

Photo by  Parker Johnson  on  Unsplash

I have pulled together a voter guide for the upcoming midterms on November 6, 2018 that would focus on candidates and issues that would allow us the best possible rights to make the choice we did with Grace Pearl. I am focusing in Missouri because that is where I am most familiar with the candidates and issues, but for wherever you are, I ask that you take reproductive rights into account when choosing a candidate, and how much the individual will do to protect rights of families like mine.

People run into situations like mine every day, in every state. We deserve to be able to make the best choices for ourselves and our families without undue burden in terms of cost, geographical restriction, and time frame. If you vote for a candidate that is against reproductive rights, know you are voting to hurt babies like Grace and women and men like myself and Jim. There’s no way around that.

I’ll take this chance to say we also deserve honest, comprehensive medical care, not places that will blatantly lie to us like Crisis Pregnancy Centers. Please learn more about them here.

Important Voting Information:

The Missouri ballot is huge for the midterms, so I will only be listing out the things I’m best educated on, and then resources for the other issues.

✔️ Polling places will be open from 6 am until 7 pm
✔️ If you are unsure of your polling place, you can look it up here: https://bit.ly/2fg5NRR
✔️ You will be required to show a form of ID at the polls. See acceptable forms of ID here: https://bit.ly/2OdbZba

DO NOT LEAVE A POLLING PLACE WITHOUT VOTING —call this non partisan election hotline (1-866-OUR-VOTE) if you have any voting issues.

Now to the voter guide resources:

I’m going to go over my own personal recommendations, where I have them, in the next section. However I just don’t know enough about every issue to make an educated assessment, especially when the ballot is this long. So here’s what I do/resources I use:

  • The League of Women Voters has a great resource at vote411.org. You type in your address & get a personalized ballot with info on each candidate/issue. I go through this list and select each item, and print it off at the end to take with me to vote. PRINT IT OFF OR WRITE IT DOWN in case you can’t look at your phone while voting. Many places ban phones in the polling area.

  • For issues where I do not have an established opinion yet, I have trusted sources I use. They include:

    • ProgressWomen - Representative Stacey Newman puts a LOT of effort into her recommendations, and I value her opinion. She has also covered all Missouri AND county propositions, so this is a comprehensive resource.

    • Planned Parenthood MO voting guide - Planned Parenthood has protections of reproductive rights at top of mind, and this voting guide is consistent with that.

    • NARAL voting guide - they likewise carefully vet for pro-choice candidates and issues.

  • You can see the Missouri Bar recommendations for each judge on the ballot on vote411 while you’re selecting the rest of your ballot. It will tell you each judge and their recommendation, and you can research more from there. There are a few that are not recommended for retention.

My Personal Recommendations/Endorsements:

  • US Senator: Claire McCaskill. I am with many people in feeling that I wish McCaskill were different in some ways, but she has a solid voting record in terms of reproductive rights, and that means a lot to me. Additionally, I am terrified of what electing Josh Hawley would do to all sorts of social rights, including reproductive rights, and he is currently promising that pre-existing conditions will be protected as part of healthcare while entering Missouri into a lawsuit to undo the Affordable Care Act (which would undo the protections of pre-existing conditions). He’s blatantly lying to us.

  • U.S. Representative, District 2: Cort VanOstran. I actually am not able to vote for Cort as I am not in his district, but I have still spend many volunteer hours pushing out awareness around him and encouraging people to vote for him because his incumbent oppoent, Ann Wagner, is THAT BAD. She’s pro-life all the way down the line, and would absolutely vote to hurt Grace, Jim and myself. Cort is endorsed by NARAL and Planned Parenthood Action Fund, which goes a long way with me. These organizations support our right to make the choice we did, and fight for laws that protect us.

  • State Auditor: Nicole Galloway. I saw Nicole speak at an event and was very impressed by her. She has done this job since 2015 and has done an outstanding job, as reiterated by the St. Louis Post Dispatch.

  • State Representative, District 91: If you are in Sarah Unsicker’s district, I recommend her as a representative that is on the Children and Families House Committee and has fought for reproductive Rights

  • State Representative, District 80: If you are Peter Meredith’s district, I recommend voting for him. I find him to be thoughtful, transparent, hard fighting and compassionate. He was hoping to propose a bill last year that would include infertility treatments in insurance coverage, which would be transformative for families like mine.

  • Amendment #1 (aka CLEAN MISSOURI) = VOTE YES. I have personally worked on this campaign because I believe SO STRONGLY in it. It bans lobbyist gifts to General Assembly, requires open legislative records, lowers campaign contributions & limits committee donations, requires 2 year lobbyist waiting periods and ensures a non-partisan district map process (aka, limits gerrymandering, making sure our votes matter more). This is super important. VOTE YES. If you vote for nothing else, vote for this one. But vote for everything.  More info at CleanMissouri.org 

  • YES on Proposition B – Increases the Minimum Wage to $12 by 2023. St. Louis Post Dispatch endorsement HERE. There are a lot of reasons that I agree with this, but in terms of reproductive rights, if you’re not aware, the Hyde Amendment prevents abortions from being covered by federal funds. If we want women to be able to exercise their reproductive rights asap in an unwanted pregnancy, they have to have the funds to do so. Economic equality is very important to me.

These are the issues that I am most comfortable making endorsements on, and I’m always learning more so if you feel I’m wrong about any of them, please reach out!

NPR 1A: Our Story Will Be Featured Tomorrow, Thursday, May 17

Our story of learning about Grace Pearl's fatal fetal anomaly, our decision to terminate the pregnancy, and how it felt to be put through Missouri's abortion laws will be featured on NPR's 1A program tomorrow, Thursday, May 17th. You can learn more about the program here: 

Could Abortion Become Illegal In The U.S.? - 1A

New restrictions in some conservative states are urging a high court battle over a woman's right to an abortion.

1A is broadcast live at 10 am ET. Check with your local affiliate for when it will air there. In St. Louis, I believe it airs live.

The Day After We Learned about Grace's Disease: Missouri's Abortion Consents and Informed Consent Packet

I wrote last week on the anniversary of learning that Grace had a life-ending disease, discussing how the day unfolded and felt along the way. It was an enormous blow and shock to the system. Little did I know the amount of insult was going to be added to our devastating injury in the form of the process the state of Missouri imposes on women and families that want or need to terminate pregnancies. 

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I had been given hints about what was to come during our anatomy scan and subsequent discussion with our doctor, and then the follow up high-tech ultrasound to confirm Grace's diagnosis. There was talk about how we, at 20 weeks, 6 days pregnant, did not have a lot of time to make a decision about how to proceed. When we were called about scheduling time to come sign the consent forms, I was told we would have to try to sign them the next day because of the 72 hour waiting period, and that if we couldn't get that performed by by 21 weeks, 6 days (including the 72 hours), we'd have to go out of state to have the abortion. I was told we were lucky to be in St. Louis, home of the state's only abortion clinic (at Planned Parenthood). All of this stunned me and left me feeling misunderstood, unsupported and worst of all, judged. We had just learned our very wanted daughter would never get to live the life we'd dreamed of for her. Now we just wanted to get the necessary next steps over with as quickly as possible. The limitations and requirements felt hurtful and inappropriate to me, at a time when I was already deeply steeped in grief. I kept asking if there were exceptions for people like us: people that wanted their pregnancy but learned it would never result in a happy, healthy child, and that instead our child would die a painful, suffering death. To be informed over and over that there weren't exceptions told me that our lawmakers clearly hadn't thought the laws through well.  As I considered that unavoidable reality, I also considered how I would feel if I needed or wanted an abortion for other reasons, like an abusive partner, failed birth control and so on. I felt more and more like if the laws missed the mark on us, they'd missed the mark on so many other scenarios as well, and that therefore the requirements weren't appropriate for anyone.

As a privileged woman of reasonable means, learning about the ridiculous process required of us to do what was humane for our daughter was kind of like when you first learn that adults aren't always mature, kind or right after growing up depending on that as a fact. How much my privilege was still helping me in our terrible situation washed over me, leaving me heartbroken, indignant and shocked over and over. What about women in rural areas (100+ miles away) who needed the time and money to get to St. Louis or another state for the abortion? What about women who already had children and couldn't find childcare as soon as they needed to to sign the consents to meet the 72 hour waiting period and get the termination before time ran out? Anatomy scans happen between 18 and 22 weeks, so this isn't implausible in the least. We also were lucky to have jobs that accommodated our last minute scheduling needs, but many are not nearly as lucky. The Hyde Amendment prohibits federal funds from funding abortions, so it's exceedingly expensive at our stage of pregnancy ($1500 at Planned Parenthood, $8000 at a hospital, which is highly recommended at our stage of pregnancy because it is risky for me as the mother). Who can afford that at such short notice? I was blown away at learning this is how it really is to get an abortion in Missouri. 

That is how much I knew going into signing the actual consents to start the 72 hour clock and schedule our procedure. I had no idea how insulting the consents themselves would be. If the requirements I had encountered so far (geographical limitations, 72 hour waiting period, likely lack of insurance coverage, deadline that contradicted the recommended timeline of the anatomy scan guidelines per my doctor) were tone deaf to our situation, the consents and information we were given were downright callous and insulting.

When Jim and I arrived to sign the consents, we were met quickly by a doctor who, before reviewing the materials with us, warned us that she would have to guide us through some very difficult paperwork, but that it did no reflect how she, the doctor assigned to our case, felt about us at all. I quickly realized and confirmed that this was legally required paperwork, NOT medically required paperwork. I grew cautious and reserved, preparing myself for the worst. The state of Missouri delivered: we had to initial every line of this consent form 

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If you're reading this, feeling perhaps like it's appropriate, please consider the following: we were reeling from learning our intensely wanted daughter was going to die a painful, frightening death upon birth, if she made it that far. The care and support we encountered after learning that was being required to sign a consent saying I had seen an ultrasound and have heard a heartbeat. Imagine for a second how you'd feel in that situation. I was nearly 6 months pregnant. I had requested extra ultrasounds and had a home Doppler to check for Grace's heart beat every few days because I was so nervous after nearly 4 years of infertility and a prior miscarriage. This confirmation requirement was ridiculous, insulting and hurtful. Then I'm being told about Grace's anatomical and physiological features by a legal consent form instead of by my medical staff, as if I'm unaware. The doctor that just the day prior had given us an hour long ultrasound, detailing every feature. Would we allow this in our other medical decisions? Did they really think I needed education or reminding? I didn't need a government issued document to do this for me, especially when it included inaccurate information (more about that in a minute).

I couldn't believe I had to sign such an obviously biased and manipulative document (which highlighted all of the risks of having the abortion, but none of the higher risks of continuing the pregnancy, such as the very real risk to a woman's health), especially when my impending medical consents would cover everything necessary, and more importantly, were written using informed medical opinion and facts. The consent form lit me with indignation, outrage and defeat.

We had to take several breaks to process what we were having to sign. The layers of how openly against us our laws were kept washing over me. I have lived in Missouri all of my life. I have paid taxes here, voted in every election I can, volunteered here, defended it to people that want to call it backwards and ignorant. And here I was, a life-long citizen, being told I was less than a full human deserving of basic decency, bodily autonomy and incapable of making up my own mind about my pregnancy, because I had gotten pregnant. What a catch-22. I was deemed adult enough to be Grace's mother, but not to spare her an inevitable painful death. I wondered again if men would tolerate being treated this way. 

When we were done with the consents form, we were given the Informed Consent Packet:

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This is 36 glossy pages of tax-payer funded "education" on the fetus, carefully detailed (yet sometimes inaccurately) by gestational age before getting into the risks of abortion while ignoring the risks of continuing pregnancy (which are far greater than those associated with terminating a pregnancy (pages 13-15)). It inaccurately stated that fetuses start to feel pain at 22 weeks, while every doctor we talked to said 24-28. The packet is just as loaded with judgmental notes, starting with the first page where it notes: “The life of each human being begins at conception. Abortion will terminate the life of a separate, unique, living human being.” This is of great debate, so I was angered that it was stated as fact, with utter disregard for the medical community's findings and opinions in regards to this. I didn't like that political opinions were being fed to me in my time of needing a medical procedure. And I wondered: what were we supposed to do? Say the packet succeeded in making me feel guilty and I wanted to change my mind. What was I supposed to do with that feeling? Not end our pregnancy? The information in the packet wasn't going to make Grace's disease go away, and all it did was make me feel disregarded, insulted, judged and utterly misunderstood. It felt like kicking us when we were down.

I asked if we had to take the packet with us, and were told no. Jim asked how many people had taken it with them and the doctor said the last one was probably taken 3 months ago. That told me a lot about how firm people felt once they made the appointment, and how much of a difference this packet likely made in the minds of the women it was designed to affect.

I felt terrible for our doctor, clearly there to provide me with great medical care, being required to give us this inaccurate information, designed to manipulate me. She never failed to be supportive and compassionate with us throughout the entire process. 

We left the clinic to start our 72 hours of waiting, with the wound of our daughter's news still so new that it was increasing and spreading rather than being anywhere close to starting to heal. We added to it fury, disgust, helplessness and deep sadness at how we were treated by the state of Missouri, and how other women and families are treated. Do we not care about the psychological impact on our women over unborn fetuses? I never really got that concept so fully until then. 

Anyone close to me would tell you I'm a different person now than I was before we lost Grace. Having to choose to end our pregnancy was life changing and devastating, but being treated like ignorant, flippant, uninformed parents by the state of Missouri changed me just as much. It ignited an anger and sadness in me that has been just as difficult to cope with, and spurned me into advocacy and this website. It has not been fun to expose myself in this way, as we have grieved, and to sometimes meet condemnation for our choice. But that's how desperately and strongly I feel about our experience. I never want another family to have to go through such an awful process ever again. I'm just one person, but I'll do what I can to try to make it better for as long as I can. 

If our story filled you with the same feelings I've described, please consider sharing. The more people know about this reality, the closer we'll get to implementing real change. People need to know what the people they're voting for are doing, how badly written the laws are (and continue to be) and how it affects real families. 

 

 

An Interview with Lizz Winstead and Things You Can Do to Help RIGHT NOW

This article hitting Feministing regarding Governor Greitens' Emergency Session against reproductive rights to the tune of $20,000/a day of taxpayer money has prompted people to ask what they can do to help, which absolutely thrills me. I shared our story with the hopes it would raise awareness and prompt activism from people, and there are tons of opportunities out there. So without further adieu:

What you can do RIGHT NOW

Call and email your state senator and tell them to gavel out of this expensive, unnecessary, and politically motivated special session. Thank them for working hard on a compromise, and say what the House did is inexcusable. Ask them to please not allow the governor's dark money and political ambitions get in the way of democracy. 

More action items will come when the senate reconvenes. 

What you can do NEXT WEEK (but buy your tickets right now - it will sell out!)

Lizz Winstead, co creator of the Daily Show, is coming to The Blueberry Hill Duck Room in St. Louis next Thursday (June 29) with her Lady Parts Justice League Vagical Mystery Tour. You can find St. Louis event information here (and a list of all shows here). I highly encourage you to go for 2 reasons:

1) Lizz and her fellow comedians are SERIOUSLY funny. I got to see Lizz with Sarah Silverman a year ago and she knocked my socks off.

2) The show also features discussions with local providers and advocates, and provides ideas for ways you can get involved and make a difference looking at the skills you already have. 

I interviewed Lizz to learn more about the show, what they are trying to achieve, her perspective on reproductive rights, and the one thing that everyone can do to make a difference right now. (This content has been modified to be condensed and for clarity):

Tell me about one of the best things about the Vagical Mystery Tour

Lizz: The comedy show brings in a group of people (150-500 people) to have a great time and also have a meaningful talk back about opportunities available to them. We want people to be able to say this was a great experience, and then you’re giving me opportunity to do what I can, also with the time that I have, to make a difference. Some of these things take 20 minutes, an hour, etc.

I have a whole team of people who are excellent comedians, and they talk about life from these different lenses. We have black, brown, trans, white and gay comedians, and people can come to this comedy show and hear about their own lives. 

At the end of each show we have a conversation with someone from a clinic and from an activist group that supports reproductive rights and justice so people can sign up right then and there and learn what they need. We’ve been able to access handymen, painters, designers, landscapers, etc.

These are little things, and the providers are buried with work and care that sometimes they can’t even tell what they need. We have been able to go in, take a tour of the clinic and ask questions and then help.

What is your best advice for someone that wants to make a difference in the arena of reproductive rights?

Lizz: (laughing) Aside from not making your zoo the anti-abortion zoo… First and foremost, when you connect with your local clinic and activists, you can really get information on what’s going on in your state. You want to ask yourself "who is my go to person for information"? Get connected with them.  

While we all talk about all these laws encroaching on reproductive rights, people still need to get care and provide care, and so we need to ask how are we as citizens making sure that the caregivers and those that need abortion are being supported, and not being stigmatized? 

So for example some of the things you can do are escorting patients. Sign up for escort service where you are committing to helping patients get into care without judgment. A bonus is this also means being part of the community that stands with the clinics. You are showing politicians and your community that you are a face and a voice that thinks that clinics are important and are doing a great job.

Another thing you can do is getting together with your like minded friends who are also going "what can we do?" over and over and panicking, and meeting with them so you can open a bottle of wine and send postcards to share your love and support. These organizations and clinics always get so much hate mail, so getting your love and support really matters.

Think about what can you do to lengthen the life of your clinic. Can you throw a fundraiser? Have a mixer at your house where people can get to know your provider or your abortion fund. Treat them like the treasures that they are.

Finding out what the clinics and advocates' needs are. Get together with friends, let a clinic vet you so they know you’re a trusted source, and find out what they need. Often people don’t look at their own lives and skill sets and see how they can help out. If you’re a great graphic designer, or if you’re good at landscaping, you can help! If you’re a good baker, you could bring cupcakes to the clinic 4 times a year to show your appreciation. Maybe help an advocate with their website that needs a new logo. Offer to paint a clinic's fence or do some gardening to maintain the clinic so when patients come in they feel like it’s a nice space and feel welcome, and the people that work there walk in and feel great that their community supports them. Translators especially are needed for refugee cities where Arabic or Spanish are helpful for a patient care advocate. It's nice to have someone on call that can help. These all kinds of things that might be in your personal wheelhouse.

Finally, get on an email list to work with your local advocates and clinics so they can reach out to you whenever you need something and then you can network. The thing is that a lot of times, a clinic that provides abortion services in a community... lawn services or gutter cleaning services won’t come because the clinic provides abortion care. Simple things other business can get just by looking in the yellow pages aren't available to clinics that provide abortions because the providers don’t believe in what the clinic does, or they’ll be targeted by anti-choice people at their business.

I am loving this because it has an avenue for everyone. If there was ONE thing everyone could do, what would it be? 

If you’re too busy, and care about this issue,  I ask every single person to stop using the term pro-life. They are anti-abortion. I have seen clinics that have been firebombed and vandalized. I have friends who are targeted. Patients who have gotten death threats for having abortions*. We cannot cede the term pro-life because they aren’t pro-life. Physicians that are friends of mine - their best friends have been murdered. This is being done by anti-abortion activists. It’s only fair to call them that. Language matters.

 *Robin Note: This is a HUGE reason more women don't share their stories. Trust me. I know a lot of women who have been in my shoes but they don't share publicly. 

Has your approach to LPJL and the Vagical Mystery Tour changed since Trump took office and there has been a bigger proliferation of falsehoods? 

The interesting thing about it is I’m glad we started this organization long before Trump took office. So many people in so many state legislatures were already passing these laws before Trump was in the picture. Oregon is the only state that hasn’t proposed crappy legislation. Really. it's every other state: red states, blue states, purple states. But in the wake of Donald Trump, it’s just gotten worse because the federal legislation and the Supreme Court are very scary.

We need people to understand and pay attention to state legislatures and demand their birth control and abortion care because we are owed them. We must demand from men and women both that they recognize reproductive rights are part of our human rights. 

I know you were raised Catholic, which believes abortion is a sin and murder. How was that transition to where you are now?

I definitely was. The bottom line is I realized I can’t believe in a God that is cruel and retaliatory. I know when I wake up every day that I am doing my best to be a good person. And there is not one word about abortion in the bible. Science says something else different from Catholicism too. 

And the real fact is Catholics have abortions at very high rates, and they use birth control. 


The Vagical Mystery Tour is Thursday, June 29th at Blueberry Hill Duck Room. It starts at 7:30 pm, and you can buy tickets here.

Vox Magazine's Comprehensive Piece on Abortion, Including Our Story

Out story has been include in Vox Magazine's Labor intensive fight: The state of abortion and reproductive health in Missouri

This piece shares multiple stories that represent the many different stances on reproductive rights and what fuels them. While the piece is focused on stories that represent Missouri's 3 million impacted women, it's easy to extrapolate the experiences, hurdles and opinions to just about any conservative state. As the piece's introduction states: "There are 3 million women in Missouri whose well-being hinges on our ability to understand why disagreeing neighbors shout alongside a road named for God himself [Providence Road]. We challenged 12 reporters to examine the state of women's reproductive health in Missouri. What follows is their experience — in church pews, along the highway, in the homes and businesses of the people affected most — and hopefully, a mutual understanding".

Labor intensive fight: The state of abortion and reproductive health in Missouri

Abortion is an unending national debate, and women's reproductive rights are intrinsically connected to it. These 14 stories chronicle the lives of Missourians engrained in the issue

You can find Jim's and my story under "The Choice". The piece is comprehensive; it features stories for people both on and off the campus at University of Missouri - Columbia, who/what is behind the anti-abortion billboards on Highway 70 running through the state, an article debunking Planned Parenthood myths and another discussing prayer and action.

I think Vox Magazine did a great job capturing many of the elements that make abortion such a difficult issue, and highly recommend everyone take the time to read ALL of the pieces, not just those that support your point of view. It's a very nuanced issue, Vox Magazine did a great job covering it as such, and it deserves to be read and considered. 

Why Not Palliative Care for Grace Instead?

To discuss this topic, I'm going to bring up a story.

I was notified of an update on my Facebook page from Judie Brown, who wrote this note. Judie includes:

"Utz complains that, because of a Missouri state law, her insurance did not cover the cost of aborting her daughter. She writes that getting the abortion can be costly since Planned Parenthood does not offer abortion when the health of the baby is the reason for the abortion. In addition, she complains that, had she waited two days longer for her abortion, she would have had to go out of state for it.

In other words, Utz is using the very sad abortion-death of her daughter to sound the alarm and warn readers that the act of abortion must be protected by law. Sadly, she does not recognize that her preborn daughter was worth every ounce of suffering she and her husband might experience simply because they loved her unconditionally and looked forward to seeing her, if only briefly."

First, Judie, thank you for taking the time to write your note. You noted that you feel so strongly about it it's hard for you to not come off as harsh or cruel, and I thank you for your effort – you are obviously coming from a place of strong moral objection to abortion (I assume for any reason) and I respect your position, and know you're far from alone in it.

Before I share my perspective, I do want to clarify two things –

  • You misunderstood the Planned Parenthood coverage. I did not complain that Planned Parenthood doesn't offer abortion when the health of the baby is reason for the abortion. They indeed do. 
  • You cite a page that says babies feel pain at 22 weeks (20 plus the two weeks before fertilization), which Grace wasn't yet. There is a lot of research that supports that fetuses don't feel pain until the third trimester (28 weeks). This is the information every single one of our medical professionals independently gave us; it is not an isolated number.  However, even if she'd been later when we discovered this, we'd still have wanted to explore the option because the pain would have been less than she'd have felt at full term, and she wouldn't have just undergone the trauma of delivery.

Now for my perspective: 

Judie, you say "Sadly, she does not recognize that her preborn daughter was worth every ounce of suffering she and her husband might experience simply because they loved her unconditionally and looked forward to seeing her, if only briefly." While I respect that you feel this way, your feelings don't make them fact.

I can assure you that my husband and I loved Grace immensely. When we learned about her diagnosis and how little time we had to make a decision, we were shellshocked. We considered continuing to carry her, and also delivering her then so we could see and hold her. But we didn't pursue any of these options precisely because Grace was 100% in mind:

We were told by now five independent medical professionals that Grace would have 100% not lived, and there was a good chance she would have been stillborn. So her options for demise were:

  1. Have the pressure and weight of my body slowly crush her to death, and be stillborn.
  2. Put her through the trauma of delivery, to then discover with full consciousness and a fully developed nervous system, that she couldn't breathe and didn't have functioning kidneys, and be put immediately on life support or allowed to pass away. 
  3. Have us terminate the pregnancy via cutting her umbilical cord at 21 weeks 5 days in the warmth and comfort of my womb, before her nervous system and consciousness had developed further. 

All of these options sounded terrible because they were. But hating the options didn't allow us to not make a choice. So we made the best choice we could with our daughter, each other and our Higher Power in mind. We believed that her passing in the warmth and love of my body was the best route forward. People debate whether having her umbilical cord cut before she passed was humane, but I feel strongly it was the MOST humane out of terrible options. You may not feel that way, and I respect that, but it doesn't make it less true from our perspective, and I hope you can consider ours.

A lot of your post is about the options for palliative care for newborns that have disease. You noted that "At Alexandra’s House, Grace and her parents might have experienced something quite different and may have felt a sense of closure and peace if Grace had died a natural death." I have not done extensive research on Alexandra's House, but I'm including a link here for people who feel the way you do. I want them to have a choice in handling this terrible situation in the way that feels best to them as much as I want for us to be able to make the choice that's best for us. 

There is one final misconception I want to clear up: my husband and I feel a sense of closure and peace – you are incorrect to assume we do not. We had terrible options presented to us about our incredibly loved baby girl. But we did our very best with the information we had and feel 100% at peace with the decision we made. Sad about Grace's fatal illness and the options present to us, and never getting to watch her grow up? Absolutely. Upset that the legal process made it unnecessarily cruel? Yes. Comforted that Grace suffered as little as possible because of the choice we made? 100%.

It may not have been the choice you'd have made, and I respect that, and want to include Alexandra's House for people like you who are faced with such terrible options and wouldn't make the choice we did. But it's incorrect and inappropriate to assign how you'd feel about it to how we feel about it and assume your opinion is fact. It simply isn't. 

 

Have any questions? Comments? Want to continue discussing? Please comment, and remember, only kind, respectful, comments will be welcomed. Let's be curious instead of judgmental. 

And please share! You can do so using the little Share button in the bottom right corner of this blog post.