Nevertheless, she persisted

I'm rather overwhelmed right now. A piece I drew this morning has gone viral on Facebook. If you happen to see this without attribution somewhere, it's mine. I drew it in response to Mitch McConnell's words in silencing Sen. Elizabeth Warren's reading of Coretta Scott King's letter, and for all the women I've run into who don't think they need feminism. It's amazing that something so simple can resonate with so many.

The original was missing the signature because I totally forgot to sign it, plus I didn't expect it to be shared further than by a couple friends. Facepalm for that now. I signed it and rescanned it this morning.

ETA: I'm being asked a lot about prints. I'm extremely busy today with kid scheduling and general life (curse you, narcolepsy), but a few friends and I are working on figuring out print options with the intent of any proceeds going to charity.

Political Artwork

Baby Steps

As a registered Independent, socially liberal pantheist, I am the yellow dandelion of Kansas.

On Monday, I sent my letter to the twenty-six members of the House Committee on Federal and State Affairs, the president of the state senate, and the governor's office. I have had one reply so far, and this afternoon I met with the Republican state representative from my district, Mike Kiergerl. We had a nice, civil conversation that lasted almost an hour and a half, and I gave him some things to think about, especially relating to my experience with hyperemesis gravidarum.

It seems like the legislature just passes a lot of these bills through even if many of them don't agree with large portions of it, just so they can move on to the next bill. Amendments and riders really twist things around and he told me how he once voted against a bill he wrote because of the junk tacked onto it. We definitely had things we disagreed on, but he wasn't an extremist in most issues so he was easy to have a discussion with, and I can certainly respect someone who is willing to listen to what constituents of other view points have to say. He also understands the value of math and science, two areas of education I am passionate about. 


He said portions of the H.B. 2598 will probably come up again next year because there were time limits attached to articles such as teaching D&Cs at state schools (it allows medical residents to learn the procedure at other venues until June 2013). Hopefully he'll remember some of the things I told him and use them during future discussions on these bills. He was quite level-headed about the issues and it would be nice if more politicians were, even if I don't agree with everything, or even most things they stand for. People of dissenting opinions need to be both respectful of and honest with each other if any sort of progress is to occur.


Small steps, but hopefully the small steps will lead to bigger ones.  Open dialogues are a great way to come to terms with differences, and I think more politicians would benefit from sitting down for lunch with people of all demographics so they can understand where the other side is coming from.  Even though there will always be philosophical differences where no compromise can be reached, a little respect goes a long way no matter what your opinions may be.

L is for Lunar

The moon at 2:00pm today.

"You are a songbird wreathed in flames, but you need to learn how to slow down and breathe if you're ever going to learn how to fly." Maral, The Crystal Lattice


I've been spending a lot of time reading through the lunacy of this bill.  The language in it is horrific and it's taking some effort to decipher the meandering and often incomplete sentences.  Are all bills this incoherent?  If they are, no wonder our political system is such a mess.

I needed a break and the kids were going bonkers, so we went out into the backyard and set up the tent.  Turbotot decided to run amok and eat dirt while Messy Mouse laid on a blanket and took a nap.  The insects are already swarming, and I had to pick aphids off Messy Mouse's shirt.  We had the little tent out, and when I went back outside this evening to put it away, two rabbits ran out of it.  We are the only ones in the neighborhood without dogs, so the rabbits use our large lawn as a safe haven.  Two years ago, they built a hutch in front of the basement window, and it was fascinating watching the bunnies grow and leave the nest.  We haven't bothered to weed that section of the garden in case they want to use it again.  They didn't come back last year, and I suppose if they don't build a hutch there this year we'll pull up the weeds.

These ferns are really beautiful when they are fully unfurled.  Fiddleheads are edible, but I've never tried them.  I'm not sure if this particular variety is the edible kind, so I am hesitant to try.

A Little Lie Won't Hurt

I am meeting with a state representative on Saturday to discuss Kansas H.B. 2598. Right now, I am going to focus on a specific aspect of the bill, an aspect that has already passed in Oklahoma. This bill has far-reaching implications that have nothing to do with abortion. It is potentially family-destroying and will lead to an increase in suffering. There are plenty of disorders that when diagnosed in utero can be treated immediately after birth, but there are also disorders which are invariably fatal.

When doctors are allowed to lie to their patients, not only is trust broken, but families are shattered. The doctor uses his or her faith as an excuse to violate his patients’ trust. The following scenario could become common if doctors are allowed to lie when they think a family might terminate. It may be difficult to read. I know it was difficult to write. No one wants to consider the possibility that something could be wrong with the baby, but unfortunately it does happen. Most families are lucky enough to have healthy babies, but you never know when nature will give you something different than you expected.

* * *

Imagine for a moment that you are a young man living in a state where doctors are allowed to lie to their patients because of their own religious convictions. You get married and decide to have a baby. Maybe it happens right away, and maybe it takes a while, but as soon as you see that little line on the test, you are in love.

You go with your wife to her prenatal appointments, hear the heartbeat at ten weeks, watch her belly begin to round out as she tells you she feels the first little kicks. At twenty weeks, you go with her to the big ultrasound. The doctor tells you the baby is healthy, but was too shy to reveal his or her sex. You are disappointed with not knowing, but at the same time, the surprise is exciting.

You and your wife pick out names. You paint the walls and decorate the nursery, maybe as a birthday surprise for your wife. You have a baby shower, and everyone is excited. Maybe this is the first grandchild on both sides of the family, and you are overwhelmed with baby gifts. You begin thinking about college savings plans, vacations you can take with your child, and wonder what he or she will look like. You can’t wait to meet your baby.

Full term comes and one morning your wife wakes you up to tell you she thinks she’s in labor. When you get to the hospital, you can’t help but notice your doctor appears nervous. You brush the thought of it aside and excitedly support your wife through her labor. You call your family, and they wait for the official announcement. She pushes and the baby is born.

It is a boy! But, something is wrong. He does not cry. He does not breathe. His heart still beats, and he struggles to breathe, but he never will. His lungs never developed because lung maturation requires amniotic fluid, and a baby can’t make amniotic fluid without kidneys.

Your son has Potter’s syndrome. The doctor knew it from that twenty week ultrasound, and did not tell you because he thought you might decide to terminate if you knew. Your family spent forty weeks preparing to bring home a healthy baby, and now you won’t be bringing home a baby at all.

You are devastated. Your wife cries convulsively as the medical staff futilely tries to get the baby to breathe. He is fading and the nurses still keep trying to save him. Finally, the doctor tells them to stop and let your wife hold the baby while he dies. This condition is incompatible with life, he says. You struggle to comprehend what that means.

Your son looks perfect, but he dies in your arms, having never taken a breath. You hear the cries of healthy newborn babies through the walls and see happy families in the hallways. You were supposed to be the happy family with a crying newborn, but instead, your room is silent

You take your wife home to an empty nursery. Her breasts fill with milk, but there is no child to feed. They are engorged and painful, but not as painful as her loss. You are numb as you make final arrangements for the child you wanted and planned for. You call the doctor’s office to get a prescription to ease your wife’s postpartum depression and grief, but they are avoidant and take two weeks to fill a single prescription. The doctor never apologizes for leaving you in the dark. You know he knew. “Potter’s Syndrome” was written onto your wife’s chart at twenty weeks.

You bury your child, the son you were so hopeful for, who you wanted to take fishing and to baseball games. Your family weeps in front of a tiny casket. They had great hopes for him, as well. Grandparents wanted to spoil him. Aunts wanted to snuggle him. Cousins mourn the loss of a playmate. You can’t contain yourself and weep over the casket, which is little bigger than a shoe box. He was to be your future, but he is gone and you are having trouble coming to terms with it.

His death shatters your relationship with your wife. You can no longer look at each other without seeing the baby. You are afraid of having another baby because what if it happens again? What if the doctor tells you everything is going to be all right, when something is horribly wrong? You go to marriage counseling, but the counselor can’t offer you anything beyond, “It was God’s will”, and that isn’t good enough. Your wife blames herself, you blame God, the doctor never apologizes for the lie, and nothing can ever replace the child you lost.

You can’t stand to look at the empty nursery. Your wife can’t either, and she says she can’t stand to look at you anymore. She moves in with her parents and a lawyer arrives with divorce papers. Your marriage is over. You are another statistic, another marriage that could not survive the death of a child.

You move on, but you can’t forget. You cannot bring yourself to trust another doctor, no matter their specialty. What is that doctor not telling you? What if he says you’re fine, but you really aren’t? You avoid them and skip your yearly physicals. If you can’t trust one doctor, you can’t trust any. You develop a dull pain in your abdomen, but still stay home. Finally, the pain escalates and you can’t take it anymore. You go to the ER and find out you have end-stage colon cancer. The doctor tells you to trust in God and pray. You call your ex-wife and tell her good-bye. She sobs into the receiver. She and her new husband bring you flowers, but she still can’t look you in the eye. You still love her. You close your eyes and your last thought is of your son.

* * *

Now, let’s go back to near the beginning and see your world from a different perspective. You go to the twenty week ultrasound with your wife. The doctor calls you into his office and tells you something is wrong. You are told your much-wanted baby has no kidneys and will die soon after birth. You get a second opinion, and the baby is given the same prognosis.

You are devastated. After much soul-searching, research, and discussion, you and your wife decide to carry to term. You go through the stages of grief before the baby is even born. He is still alive, and you decide to celebrate his life, however short it may be.

Your wife decides to be induced so the family can meet the baby while he is alive. You set a date, go over your birth plan with the doctor, and call a photographer from an organization such as Now I Lay Me Down to Sleep. You are nervous and cry over the little kicks and the motions of the baby felt through your wife’s skin. You talk to the baby, sing to him, tell him you love him. You know you won’t have much time.

A sense of peace washes over you on induction day. The delivery room is quiet as the baby is born. The staff and doctors are gentle and they respect your time. The baby is carefully placed on your wife’s chest and she smiles and strokes his head. Her tears fall onto his hair. You take note of him, memorizing every hair, every beautiful finger and toe. You never want to forget. The photographer and the rest of the family come in to meet the baby. They hold him and kiss him. He only lives for an hour and fifteen minutes, but in that short time, all he knows is love and comfort.

It is a sorrowful day, but also a peaceful one. You knew it was coming and you were able to come to terms with it. There is no empty nursery to come home to, no freshly laundered, neatly folded clothes. The funeral arrangements are already made. That hour and fifteen minutes were not full of chaos and fear, because you knew your time was limited and were able to make the most of it.

At the funeral, you celebrate your son’s brief life. The photographer’s pictures were beautiful and you cry over the slide show. You bury your son in a special outfit you picked out beforehand. No one should have to bury a child, and it is never easy, but it is far more peaceful when you know it is coming. Your wife started on antidepressants early. She does not mind looking at you because it brings back memories of your short, yet beautiful time with your son.

A year later, you decide to try again. At the twenty week ultrasound, the doctor tells you the baby is healthy and you are able to believe him. No trust has been broken. You plan for your new baby. Your daughter is born healthy and screaming. When she is older, you tell her about her older brother and show her the pictures. You don’t think anything of going to your doctor when the dull pain starts in your abdomen. You have no reason not to trust him to do the right thing. Your cancer is diagnosed early, treated, and years later, you dance with your daughter at her wedding.

* * *

Because we have ultrasounds (and there would be an uproar if they were taken away), we have the ability to diagnose disorders and defects prenatally. It is unethical for a doctor to withhold vital information from new parents, information that could help them prepare for potential stillbirth, neonatal death, or major surgeries. We can’t take back this technology and pretend it doesn’t exist. It is here, and it has forever changed the way we approach pregnancy and birth. We need to accept that, and be grateful that it can help prepare parents for tragic situations. Trust is so vital in our relationships with our doctors and other professionals, and for doctors to intentionally violate our trust without repercussion is unforgivable.  It is unconscionable to choose to increase a family's suffering when you could have helped ease them into a horrible situation.

This scenario takes into account just one aspect of H.B. 2598, but I believe this alone is reason enough to reconsider the legislation sweeping many states right now. I wrote it from the father’s perspective because most of these legislators are male. I know it was not easy to read, but a little empathy is vital right now.

An Open Letter to the Kansas Legislature Regarding H.B. 2598

Note: This bill, or a very similar one, is now SB142. My follow-up comment is here.

Dear Kansas,

I am a Kansas resident and a married mother of two. I have a college education, but for now I choose to stay home with my children. I pay my taxes, I vote, I contribute to society in whatever ways I can, and I strive towards leaving my country a better place than it was when I was born into it.

            I am appalled by your support for H.B. 2598. Among other things, this bill absolves doctors of lying to women and families if there is something wrong with the pregnancy or the baby. It reveals a glaring lack of knowledge about both medicine and the human condition. You are attempting to strip all trust from the medical field and leave us with no one to turn to when something goes horribly wrong with or within our bodies.

Approximately forty percent of conceptions end in miscarriage. About half occur very early, often before the woman even knows she is pregnant. Up to seventy percent of miscarriages are due to chromosomal errors such as triploidy and trisomies. With the exception of Trisomy 21, these chromosomal errors are invariably fatal, and death can occur anywhere between conception and several years after birth, if the child survives pregnancy and is subjected to extensive medical intervention. The rare child who survives longer, or even into adulthood, is profoundly disabled. The older survivors often have mosaic trisomy, meaning they only carry the chromosomal error in some of their cells, so they are not as severely affected as the children who were stillborn or died soon after birth.

I am not going to debate quality of life for the rare survivors, but instead the quality of life for those who do not survive longterm. What many people don’t understand is the poster children for birth defects and chromosomal anomalies, spina bifida and Trisomy 21, or Down Syndrome, are the best case scenarios. These two disorders should not be used as a baseline for debating pregnancy termination. You may not understand the devastation of severe and fatal disorders if you have never watched a family go through the agony of losing a child either before or after birth to such heartbreaking disorders.

There are far worse disorders than Down Syndrome. In addition to trisomies and triploidy, all of the following disorders are 100% fatal. While uncommon, they are not as rare as you would hope. They are very real, very frightening, and so emotionally wrenching that most people are hesitant to discuss the possibility of them.

• Anencephaly (lack of brain development)

• Potter’s Syndrome (no kidneys to create amniotic fluid, so the lungs don’t form properly and the baby suffocates within hours of birth)
• Acrania (the skull doesn’t develop so the brain is eaten away by amniotic fluid)
• Limb-Wall Body Complex (very severe limb and trunk defects)
• Lethal Skeletal Dysplasia (the rib cage is too small for the chest cavity, baby suffocates)
• Osteogenesis Imperfecta, Type II (extreme brittle bones, bones broken in utero, underdeveloped lungs, most die within a year due to brain hemorrhage or respiratory failure)
• Alobar Holoprosencephaly (failure of the brain to form properly, cyclopia, seizures, baby is stillborn or dies soon after birth)

These are just a few of the thousands of ways human development can go awry. There are thousands of other defects and disorders that vary in severity, but are often fatal and can be diagnosed as such in utero. Some are treatable through medications, therapies and surgeries, some are not and require palliative care.

By allowing doctors to steal knowledge from their patients, you are contributing to the suffering of thousands of families. You are trivializing suffering and not allowing families to prepare for not bringing home a healthy baby. This is unspeakably cruel. Not everyone given a poor or fatal prognosis will terminate. Some families choose to terminate in order to alleviate their baby’s suffering (and many disorders cause intense pain and suffering both pre- and post-natally). Others choose to carry to term in the hope of meeting their baby alive and spending a little bit of time with their baby before he or she passes. It is an absolutely heartbreaking journey either way. The choice needs to be left up to the families, guided by a knowledgeable and honest doctor. It is a difficult decision no matter what, but with the proper knowledge and support, either termination or carrying to term can bring a sense of peace. This peace is replaced by catastrophic surprise and emotional agony when the choice is taken away from the families and put into the hands of politicians.

Modern medicine has given us the technology to allow families to prepare themselves for the death of their much-loved babies in the event something is fatally wrong. It is unethical to withhold such information from patients and pretend nothing is wrong. This shatters the already fragile trust many patients share with their doctors. The goal of a physician is to alleviate pain and suffering, not cause more. It is in violation of the Hippocratic oath to increase suffering, but that is just what H.B. 2598 will accomplish.

H.B. 2598 also seeks to ban the instruction of the dilation and curettage procedure to doctors in training. This measure further devalues the lives of the women of Kansas. While the D&C procedure is used for early abortions, it also has many other medical uses, some of them lifesaving. It is used to remove retained placental tissue following birth, control hemorrhages, diagnose abnormal bleeding, remove tissue from a miscarriage, and diagnose abnormal gynecological bleeding and cancers, and alleviate endometriosis. To ban the instruction of this procedure will kill women.

Perhaps this is more about control than about abortion. The latest political maneuvers in other states include birth control measures designed to limit access to the women who need it most, and to allow employers to delve into employees’ private medical information to determine insurance coverage based on subjective medical need. I hope it does not come to this in Kansas. I don’t want my daughter to grow up in a state where her only value is her uterus, but that is what these measures lead to. Women are not chattel. We are responsible, hard working, intelligent human beings who deserve to possess the rights to our own bodies.

Using birth control is not for loose women and teenagers. It is taking responsibility for your actions and accepting your limitations. No one is forcing anyone else to use it, so it is a personal choice and must remain as such. Most married couples use some form of birth control when not trying to conceive because they know their financial, physical, and emotional limits. It is no one else’s business if a couple chooses to have many children or have no children, or chooses to terminate an early pregnancy or a later one with a fatal diagnosis. There is no one-size-fits all for contraception. Some people are allergic to latex, some have horrendous side effects from hormonal birth control, and some women have irregular ovulation patterns and cannot do natural family planning. We do what we can to protect ourselves, but sometimes the unexpected happens no matter what we do. We must be willing to take responsibility for all of our choices, no matter what those choices may be. Ultimately, the decision lies with the individual or couple, and no single religion or political party should be allowed to dictate how non-adherents react to delicate and painful situations.

I’ve heard claims about making exceptions for certain things, such as medical conditions or rape. Well, pregnancy is a medical condition in itself and it can cause serious complications in a percentage of women. Currently, one third of pregnant women end up delivering by Cesarean section, a major abdominal surgery with potential complications, and that is indicative of how serious pregnancy can be. No woman should be obligated to go through a symptomatic nightmare of a pregnancy unless she chooses to, especially if the conception was traumatic. There are members of the Kansas government who believe rape should not be an exception when it comes to abortion, and this shows how little they know of the devastating emotional effects of both rapes and pregnancies, especially complicated pregnancies.

I have never been raped, and it is disgusting to expect me to plan for being raped. I am neither a flat tire nor a farm animal. I have, however, had two traumatic, health-altering pregnancies. I had hyperemesis gravidarum with my first. It was “mild” as far as hyperemesis goes, but I was still vomiting every thirty minutes every day for four straight months. I lost ten percent of my body weight during the first trimester and narrowly escaped needing a PICC line for fluids and nutrition. I fractured five teeth because the acid ate my enamel, and I still have significant damage to my esophagus.

I was lucky enough to escape hyperemesis during my second pregnancy, but I had such severe reflux that I couldn’t lay flat from five weeks gestation on without the contents of my stomach coming up my throat. I passed three kidney stones starting at twenty weeks, a common side effect of pregnancy. I lost use of my hands during the last eight weeks and had severe pain from my neck to my fingertips because my arms swelled so badly that my nerves were compressed. I had difficulty caring for my older child, could barely hold utensils to feed myself, and was kept awake all night by the intense, unrelenting, untreatable pain in my arms.

My point is, I knew what I was getting into and chose to do it a second time. Not everyone can physically or emotionally handle a nightmare pregnancy, and mine were not as complicated or as painful as many, as I was still able to have normal labors and deliveries. Until you have a complicated pregnancy, or watch someone go through one, your opinions on the effect of pregnancy on a woman’s body carry little validity. No one should be forced go through pregnancy more than once or even at all if she does not want to or does not believe her body can handle it. If she chooses not to conceive or carry a pregnancy, she should be able to safely take whatever precautions are necessary and appropriate. It is a private matter between her, her partner, and her doctor, and not any business of the government.

A woman should be able to delay pregnancy if she chooses until she thinks her body can handle it, until she is financially stable, or for any other reason. She and her partner should not have to make a choice between inevitable pregnancy and sterility or abstinence. Many cultures and religions view sex as a natural bonding act between husband and wife instead of an action to be undertaken strictly for procreation. Currently, the conservative Christian culture is attempting to force their own views of sex upon the rest of the population. Babies or abstinence, no other options. It does not matter that Christians are the majority population in the United States of America. The majority has no right to control the actions, beliefs, or sex practices of the minority. We are not a theocracy, nor should we ever strive to become one.
          

Women are not breeder sows. We should not be expected to carry and birth child after child because some people believe birth control and abortions are for convenience. There may be a small population of women willing to be oppressed in such a way, but most of us want to make positive contributions to the world beyond giving birth and raising children. We cannot do that if our rights to our own bodies are stripped from us. There are so many people in this world who are unfit parents but continue to have children anyway because either they can't afford birth control due to lack of insurance coverage, or their culture or religion has convinced them that it is wrong to use it. The result: unwanted, unplanned, neglected children, and over-stressed parents who may become abusive or apathetic. This is the source of cultural decline.
            

It is amazing to grow a tiny new life within your body, give birth to it, and watch it grow and thrive. However, the joys of parenthood do not come without incredible physical and emotional pain and a complete overturning of your life. Not everyone wants to go through that, and they should have the option to abstain from children without being forced to abstain from sex. In an ideal world, couples would only conceive when they wanted to, but since we don't live in that world, we have to resort to medication and medical intervention. We accept the side effects and the stigmas those of differing opinions believe it is their right to bestow upon us.

Kansas politicians, you are not doctors, and many of you are not women. You should not be making medical decisions on behalf of an entire population. Please reconsider your support of bills such as H.B. 2598. This bill would negatively affect both the current generation of Kansan women and the lives of our daughters and granddaughters. Your daughters and granddaughters, included. Do not allow our daughters to go through unnecessary heartbreak or even lose their lives because of decisions made under a sparkling, waving banner screaming “Life”. We are your mothers and daughters, sisters and cousins and friends, and we are worth more than our uteri.

Sincerely,

Courtney Privett

Olathe, Kansas