Inkling Post

My name is Brie. I lost my daughter, Madeleine, at almost 22 weeks pregnant to a rare chromosomal abnormality called Triploidy on January 19th 2012. This is where I write about her, about my grief, and about life. You can find the early writings...

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If you didn’t think the march was for you, it was, you just don’t realize it.

If you didn't think the march was for you, it was, you just don’t realize it.

If you had told me I would have a possibly lethal pregnancy shortly after I turned 26 years old, there's no way I would have believed you. Things in pregnancy while you are young are supposed to go smoothly. Or so we are taught to believe. I used to think most pregnancy problems or chromosome issues happened after the age of 35. Or at least that has become the norm with medical intervention. The mortality rate for women and children revolving around births has decreased immensely over the decades of science and study.

But there are a lot of things we still don’t acknowledge in our modern day culture. Things that should be part of the conversation as we move forward with the new knowledge we have and how it forms our decisions in every day life as we propel ourselves toward being more sophisticated as a leading nation.

Some people like to complain that the march wasn’t for them because they are “pro-life.”

Guess what? We are all pro-life, so let’s just move on from that rhetoric. The way I see it is we are all pro-life, and then there are sub-categories below it of pro-choice and anti-choice. Either you have a wide knowledge and understanding that every person is very different and medical complications can be vary in scale, and this is an issue that isn’t so black and white, so we have to respect those differences and let a doctor guide a patient through their difficult circumstances. OR you have a fundamental lack of understanding of the complexities of pregnancy and women’s health, so you jumped on board the “pro-life” rhetoric because you don’t want to be “pro-death,” so you feel more comfortable in that zone. But that’s a really naive stance to take because by doing so, you don’t even know what you don’t know, and you don’t even realize you are campaigning against yourself and are endangering lives by trying to make laws based on fear.

The main argument I hear from the “anti-choice” people (that is what I will call you for the sake of this piece) is that you have a religious standpoint you cling to that revolves around the idea that man shouldn’t determine when death calls, only God should. But this is a really poor argument because for 1) you are usurping and assuming you know how your god thinks and behaves, and 2) what about the life of the mother? I’ve heard that the Catholic viewpoint is to save the child and not the mother—which for me holds no weight in rational thinking. Especially if the baby was going to die anyway, why would you not save the mom? And who are you to speak for your god? And that’s all fine if you want to live by those standards, but who are you to force those views on other people with different belief systems? We are a pluralistic nation after all.

The point is, you have the option to choose to let the mother die and save the baby, or you have the option to wait out a pregnancy that may be of risk…you have the option because women spoke out and marched for you to still be able to keep your stance. Taking away the right for a mother to choose her own life over her child’s life by being “anti-choice” is incredibly selfish, and dangerous.

And guess what? You might be taking away your own right to choose your life to live as a result of taking a stance like this. You taking this standpoint of letting laws dictate women’s health, could be the thing that kills you. Or the thing that kills your daughter or the partner of your son or daughter. That’s the part you are forgetting. That’s the human element you are choosing not to acknowledge.

Did you know you could get pregnant with odd, but rare, bad luck circumstances where the pregnancy actually turns into cancer? Did you know you can have a pregnancy where there is actually no fetus that grows? Just an empty sack of amniotic fluid that keeps growing and spiking your hcg levels. I didn’t. Not until I had a pregnancy like that. Abortion actually is just a medical term for miscarriage. It’s a word that has been abused and thrown around to insult already pained women. But did you know that you can have a “missed-abortion” where your body doesn’t miscarry the dead fetus and can poison you? I didn’t, until I had a pregnancy like that. My body apparently wanted a baby so badly it clung to whatever life form there was…even when there wasn’t a life form. And I needed medical intervention.

Here’s the other thing you aren’t taking into consideration those of you in the “anti-choice” category. You aren’t considering the emotional and mental health of the individuals involved. And I make it plural, because it is a family decision…a family’s overall health to be considered. You don’t know what trauma they’ve had prior to these horrible pregnancies, you don’t know how many pregnancies they had like this repetitively reliving the horror and disappointment…it takes a toll. You don’t know what this new trauma might trigger, you don’t know if carrying out a pregnancy might lead to suicide because it’s too emotionally painful to bear. You don’t know what the father wants. If there is already an existing sibling, will the parents be left as shells of themselves for those kids? Will their existing kids be damaged by their circumstances? There’s a lot to consider. It isn’t so simple.

And it could be you that faces it. And then tell me, if you have taken away the right to medical treatments due to law, and if you now stand in these circumstances of dangerous pregnancies, are you still standing by your religious views that this is your time for death and you don’t want to intervene? Would you be ok with watching your impending death, or wait for a possible miracle and then spread your story representing us poorly by saying “it could happen to you too…god could save your life,” offering false hope.

And if that is the case, why couldn’t you just simply say, “this is how it was for me…I was lucky…but it’s very different for everyone, and I can understand why laws shouldn’t play a role in the family dynamics of health care in this way.”

I’m not trying to scare anyone about pregnancy, what we have gone through is not the majority. Triploidy is rare. Molar pregnancies are rare. In fact, it’s so rare that it’s shifted our perspective for everything now when it comes to statistics. If the pregnancies we’ve had are less than 1% of all pregnancies everywhere, and most of those don’t make it into the second trimester, they only know because they tested miscarriage tissue to gain statistics…that means really just a handful of us in this particular instance actually experienced circumstances like we have. But it’s still worth fighting for because it sucks. And nobody needs to make it suck even more than it already does.

Now anytime we are given odds or statistics, we shy away from it. “Oh, you need sinus surgery, but there’s a risk of 1/3,000 that they could puncture your brain and leak fluid.” Awesome, no thanks, that will probably happen to me…because I won the lottery of less than 1% world wide for child loss…so no thank you, I can’t take that risk.

If you didn’t think the march was for you, you are wrong. It was and is for you. I hope you never go through what my husband and I have gone through. But if you do, know that we have marched for you and fought for you in order to face it as gracefully as you can muster through all the shock, PTSD, the heartbreak, and confusion. If or when your religious rhetoric fails you, and you change your mind and want to fight for your life instead, we will be here for you. You will have those options. Or if you choose to honor your stance and say goodbye to your time in this world and leave your spouse or children behind because you think that is your god’s will for you, we will be here for your family after you pass. Because that is your right. Being pro-choice still gives you that right…you aren’t losing anything. But by being anti-choice, you take a great deal away from families facing pregnancies like I have. And I can’t stay silent about that. It would dishonor what I’ve been through. It would dishonor my daughter’s life and story.

Here’s the thing, if you are anti-choice, I ask that you do show up at the next march. I will save a spot for you. Because I want you to see the faces and hear the stories of who you hurt with your rhetoric and votes and desired laws. I want you to bring humanity back to your soul. I want you to connect with us. Because at some point in your life, you or someone very close to you, may find yourselves in similar devastating circumstances that offer enlightenment, and some day, you may really experience the weight of what those laws actually meant for America.

Mary Oliver says it best, “Keep some room in your heart for the unimaginable.”

And I will leave you with these closing words by Mary Oliver, because I think it sums up my intention nicely,

“I tell you this to break your heart, by which I mean only that it break open and never close again to the rest of the world.”

I hope we can spread the empathy, connectedness, and protection, and comfort. We need to safeguard what we want America to be. We need to break hearts.

To see more of our story, visit the archive page to start at the beginning.

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5 Years after my Daughters death—The Great March of January 21st

January 19th was the 5 year anniversary of our daughter’s death. I had plans for it. I had plans to get her footprint tattooed on my body. I had plans of lighting a candle. Plans of talking with Preston about it. But nothing this week really played out the way I originally had thought it might.

Because it was also the day the Obama’s were saying goodbye to the White House. A presidency that gave me health insurance despite preexisting conditions. Which saved us financially when everything went wrong in my pregnancy, and we were forced to face death. It gave us access to some of the best doctors I could have asked for. It fought for equality for our LGBTQ family. It was a presidency that met humans on a humane level and fought for us to be seen and treated as such, and tried to break down the process of dehumanization that has rooted itself in certain corners of our world. And we will be forever grateful to him for it.

And then, the next day he handed the White House over to Trump. Someone who wants to strip all of that good progress. Someone who has been dishonest regularly, loves to obfuscate stories, creates delusional realities that dehumanize almost everyone. Knows nothing about the circumstances of abortion, yet spreads lies about it anyway to prey on the uneducated. And worse, he’s given a voice to the bullies, the white nationalists, and he has incited violence, hate, and anger, racism, and disrespect for women. He encourages the divide, and has no plans to heal it.

“If you aren’t outraged, then you aren’t paying attention,” someone posted a photo of a sign that said this, and it perfectly sums up how I’ve felt for years.

The Trump presidency wants to get rid of Planned Parenthood. They make up new requirements for building codes and practice requirements just so they can shut them down and say they aren’t up to code, without even giving them a chance to adjust to the ridiculous codes.  And by eliminating these resources for men and women, families like my husband and me, who may receive the worst news of their lives, that their baby they wanted so badly, who was a planned pregnancy, isn’t compatible with life, and that the mother’s life could be at risk too—those families may be at a loss for healthy care. For those who need Planned Parenthood when they don’t have good health insurance, they will either be stripped the resources they need or in a best case scenario, we will fight for their resources, but they may have to travel really far to get what they need.  

Here’s the thing that gets me riled up about laws on abortion now that I didn’t understand before we were faced with having to foresee terminating a pregnancy in our second trimester: you interfere with our personal grief process. And the reason I never saw it before was because that is not the conversation people focus on. It’s much easier to dehumanize the experience, cling to simple stories of possible regret, or seeing termination as a form of birth control (which even if that is the case, it’s still none of our business as a country intervention). People love that. They love to feel self righteous and exclude the majority and cling to a minority of tales to reinforce their own discomfort. The stories that should be shared are the personal ones. The ones shared by people who actually go through it in real life.

I remember after our loss, I was grateful to have worked with one of the kindest souls I’ve ever encountered who happened to be our doctor. I was grateful that we had insurance that covered him and the hospital. My cousin shared a story about a friend of hers who miscarried, and she and her husband went to a Planned Parenthood for the d&c, and they had to walk through protesters who yelled at them that they were baby killers. Their baby had already died! And then they had to deal with these hateful, ignorant words being thrust upon them. No one should have to go through that. Ever. Words of judgement and hate will not accomplish anything but more wounds.

A lot of what we went through is really personal, and I don’t necessarily want to keep sharing it or rehashing it. But when we lost our daughter, we made vows to each other that we would live our lives for her because she couldn’t live. And that includes sharing her story and helping change the conversation to help other families like ours who find themselves in very unexpected life changing events. And with Trump as president, who wants to endanger the lives of other mothers, possibly leaving husbands and children without wives and mommas, it is personal, and we have to fight for what is right…because that is the world we would have wanted her to live in, and it is the world we want our son to live in.

When we sat down with our doctor, he was gentle. He said, “I’m one of 2 doctors in LA who does this, and I know it’s not something just anyone can do, and I feel a duty to help because I can. I know this is the worst moment of your lives, and hopefully ever that you will experience, so I’ll be upfront about everything and answer all your questions.” He understood us. He saw this was a very raw human experience, and he handled us with respect, gentleness, and grace. When we asked for her footprint and handprint, he ordered a kit right away to have waiting for him at the hospital. He said no one had ever asked for that, and I’m not surprised because you are in such shock, you don’t know what you might want. But I do hope that because of us, he will offer it to more couples. He saw us as humans, as parents trying to do our best, and he knew his work with us would always be remembered.

Our main question was, why weren’t the signs noticed sooner? Why had we been told it was the perfect pregnancy up until now, and then crushed with a laundry list of everything that is actually wrong? If a doctor sees ultrasounds every day all day long for his whole career, why wouldn’t he notice sooner something obvious like a hole in her heart, or concern about the due date changing because of lack of growth? If I barely had enough amniotic fluid, why didn’t that get noticed? If her limbs were freezing up, why didn’t he notice the movement was abnormal? Why weren’t we sent to a perinatologist until the window of 18-20 weeks of pregnancy…why is that the normal practice? Why is that the normal practice, and then by law you can’t terminate a pregnancy past say, 21 weeks or 24 weeks? It’s such a small window to be hit with tons of information, of crushing your dreams, PTSD, and tearing your heart apart. You face instant grief, shock, and then have to navigate this unknown space that turns your world upside down. You wait as the weeks go by, you wait for more tests, and then test results, and see your child die a slow death as you wait, while limbs freeze up until she can’t move. You live with fear that any day your body could fail you. That it feels like it already did fail you. That there is absolutely nothing in your human power that you can do to save your baby, and it feels wretched.

We took time to say our good byes, taking trips to all our favorite places in town that we knew we wouldn’t get to take her since her only time with us would be in utero. And sometimes the only way to ensure a possible healthy next child, or ensure your own health and life, is to say goodbye to this being you’ve grown to love so much, but you hate to see her suffer any longer because of your selfish longings to keep her around. And it is your only real option—because the only thing that is certain is death…you just get to choose which option of death you want.

And it breaks you. It breaks your spirit. It breaks your heart. It feels like it breaks your body. It’s like you wake up, see your face in the mirror and you think you recognize the person you see, but then it shatters, explodes, and at the end of that same day you can’t ever find all the pieces to put it back together again…no amount of glue can help, some pieces just end up in the waste basket, and when you look again, you aren’t sure if you recognize the person reflected back anymore.  

Our doctor couldn’t really speak for the other 2 physicians we’d seen, but essentially offered up that general practice for regular gynecologists is to do the routine visits by the book, and assume all is fine until otherwise stated.

This is personal. Laws should not interfere with your grief. They should not interfere with your emotional ranges of PTSD when facing circumstances like this. If we had wanted to take one more week with our daughter to travel a little longer, if my body was holding up ok under surveillance, it shouldn’t be dictated by random dates selected by congress determining our time frame for ending a pregnancy. And if couples are facing these same terms and risks and are forced to rely on illegal practices to fit their emotional needs for their state of grief, then it becomes even more dangerous. Making laws about termination of pregnancies should never happen. It should be left up to professional doctors who are well versed in all issues, who can work with patients who are experiencing something very traumatic. It should be a customized treatment plan between patient and doctor—because every single case, even if a similar diagnosis, is very, very different and should be treated for the human experience that it is. Any other practice is harmful, and offensive, and an unnecessary argument to be having. Stop wasting everyone’s energy trying to control people, and start assuming we are all adults who can make well educated adult decisions for ourselves about our health care. People love criticizing the helicopter parent…but that’s what our government is trying to be right now.

So, my grief feels heavier this week. 5 years feels like forever ago, but it also feels like a really fresh wound too at times…especially times like this that make us relive the hateful words we experienced around our daughter’s death. The words we had to deal with when all we wanted to face were our facts of circumstances, and our limited days with our daughter while we still had her to say our good byes. Words that stole so much from us that we will never get back. Ever. Words that still rear their ugly heads, and that I know are cancerous, and that I know I’m not alone in hearing. Words that are naive, harmful, dangerous, pompous, condescending, uneducated, and foolish. But mostly, the common denominator I see is this: they are rooted in disconnection.

Words like, “have you tried prayer?” “Doctors can be wrong” second hand tales of “We wish she’d carry out the pregnancy” (even though they knew nothing of our circumstances), “Mother’s do not let other people harm their children,” “It would be a disservice if I did not say this”  “Do not do evil unto others,” “I know what you are going through, I miscarried at 7 weeks.” “You will regret this in a year,” “I hope you aren’t mad at me for saying this.”

Yes, I am mad at you for saying these things.

Once uttered, they reveal the inability to empathize. They reveal the lack of life experience. The show a discomfort with real life events when the shit hits the fan, and they cower behind known phrases to comfort themselves, not me—the hurting person—and in just a couple seconds they disconnect, offer no opening of the heart, and off they go, a distance in their voice, you hear them leave their soul.

For the record, a perfect response would be, “I don’t know what you are going through, but it must be awful. Can I just sit with you, we don’t have to talk, and if you aren’t ready to sit with a friend, can I check in later to see if you are ready as the months go by?”

People really fear feeling uncomfortable. And death is certainly not a normal place for comfort, so they go through life, disconnecting from it, and then dehumanizing the experience to create a story in their heads that makes them feel better about justifying that discomfort. And rather than getting to know that discomfort by interacting with people in the thick of it…they go preach their false stories to gain traction and community with their falsehoods. And when it gets out of control, and real life repeatedly tugs at them that they might be wrong, that they might not know…they double down and try to make laws with the false justifications. All in an effort to stay disconnected and attempt to comfort themselves when they see their reflection in the eyes and stories of others.

The best advice we got after our daughter’s death was from my brother in law, Michael. He said it simply, “Don’t tell yourself things that aren’t true.”

The lack of support we received when we faced the worst days of our lives was truly astounding. There was a handful of people who were truly amazing as well, and we always talk about their kindness and try to remember that association with her death as much as possible. But what shocked us was that no one from any church reached out and went out of their way to say, hey, those unkind hateful words said to you were outrageous, appalling, and fucked up…I hope you know your emotions are safe around me even though I go to church.

Instead, there was a lot of silence, and when there were words, we were met with things like, “People have experienced worse” “At least you are young” “You can try again” “We are praying for you” “Everything has a purpose…things happen for a reason,” “One day you will look back and laugh at all this” (Actual last words said by my gynecologist).

I looked him square in the eyes, “I will NEVER laugh about any of this.”

The lack of outrage that we saw then when we experienced these cruel words, we see now too as the same people seem complacent about the new Trump presidency. More than ever, you need to reveal yourself if you are safe. Because if you aren’t outspoken about it, and especially if you are part of a church (because the church has been a huge vehicle for the poison, and are the least compassionate group I’ve ever encountered despite their talk of compassion and the message of Jesus), we can’t assume you are safe. If you are ok with this presidency or voted for it, this is a problem. You are helping endanger lives.

And it is unacceptable.

The 21st of January, men, woman and children globally marched in protest for humanity.

I had friends marching in Sweden, Canada, and across America in various states.

They marched for women, sure, but they marched for human decency for all. But on a very personal level, they marched for me, for my husband, for our daughter, and our son. And they publicly stood up with outrage to the rest of America, the rest of the world, the leaders of churches, the extended family who voted for this man of hate, or who at least didn’t vote against it. They stood up for us when we couldn’t, they stood beside us in the millions and said, we see you, we love you, and we will not accept this. We will fight beside you.

And I’m so forever grateful and moved by the numbers of all who gathered to stand up for families like mine. When all I could do was cry at home watching a live feed from my phone with my grief and trauma, I felt completely inspired, and strengthened by your embodiment. You stood for what is right, showing the human experience as raw and complicated, and it varies among individuals. You showed that connectedness is what will bring humanity back from this dark place. You spread your light and walked in the cold to bring warmth in numbers. And for the first time, I got to really see how not alone we really are. What a gift this march was for us this week. Seeing how many people will fight alongside us for what is good and what is right.

We thank you from the deepest parts of our wounded hearts. Thank you for showing us how many safe people there are in America and around the world. Thank you for the connectedness.

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Dear Hillary: when my daughter died, I vowed to live for her, and I will be a voice for her

Dear Hillary,

Firstly, I would like to say it was an honor to vote for you. I had complete confidence that America would see your courage and goodness and choose as a country to follow your light. Instead, we have chosen darkness, and what a cloud it is and will be for years to come.

I believe we are meant to be a light in the world. We all have some darkness, some more than others, but there is a light in the deepest parts if we dive into our darkest moments and find a stillness, somehow we can notice tiny cracks of brightness and find a way to let it come through. The light and dark both live side by side. They are both a part of us. That's what makes us human. But in order to not be the poison in the world, we have to keep that light and truth moving us forward. I'm so deeply saddened by the results of this election.

I'm not just singularly sad because we may lose our health insurance through Obamacare, or that our livelihood may be negatively affected. It is a huge concern that a bully was rewarded and sets the example for my son that not only can a bully win, but implies you must be a bully in order to win. But all of that I can work through I can take on that burden and preach against it as I raise my child to be a light in this world despite those who are ruthless and unkind in the world. That part is in my control still.

What concerns me even deeper, is the authority of men and women spreading misinformation in the pro-life evangelical church movement, justifying their discomfort and spreading fear, judgement, and cruelty in the name of a divine, while endangering the health of women. I have never met a group of people so lacking in empathy.

We need to change the rhetoric. We need to educate people. The opposite of pro-life is not pro-choice or pro-abortion, as many love to claim and accuse. We too are for life. And I would go as far as saying we are more for life than the pro-lifers. I suppose this is the reason I'm writing you.

I am but a small voice with a small audience. But, I am fiercely committed to honoring my children and fighting for them in a world that doesn't always make sense. You have committed yourself your whole career to be a voice for mothers and children, so I ask that you will be a voice for us in this.

Here's a bit of my story.

5 years ago I was pregnant with my first child. She was very much planned and the decision to get pregnant and start a family with my husband was well thought out. We had been married not even a year, and we were excited to bring a new life into the world, into our hearts, and we were ready to raise her to be a contributing member of society, desiring to raise a conscientious person.

About 5 months into my pregnancy we received some unusual blood work results from one of the routine check ups. My doctor said it was probably a false positive, not to worry because he had literally in all his practice never seen anything like this. But to be certain he scheduled me an appointment with a Perinatologist to follow up.

I never quite know how much of our story I should share because what we have learned is that it is privileged information only for those who can be trusted to respond with empathy. Only if you can see humanity and be human in return despite your own discomfort with death. Because that is what it comes down to. America has created a culture that dehumanizes certain citizens when it comes to facing their own emotional discomfort and reaction to death. It is not just with abortion, it is with the death penalty, gun lobbying, and terrorism. But as I see how misguided people have become through politically charged fear, I'm realizing more of us need to be sharing our stories to make them human again.

We need connection. We need authentic, heartbreaking stories to pull on heartstrings. We need to be vulnerable with one another.

My husband and I went to the specialist, still thinking all would be ok. After all, if our doctor in his 60's had never seen or heard of such concerns, how could we be the one case?

When we arrived at the doctor's office they took us to a room to talk with a geneticist, which in hindsight is mostly a blur because at the time I thought they were pointless numbers and statistics. I figured they were routine for all patients. It was my first pregnancy, so I had no point of comparison.

The moments that followed were the absolute worst hours of my life and of my husband's life. (I think it's important to mention how it affected him as well, because pro-lifers and the media dehumanize women by excluding the fathers. They dismantle the family unit in order to make their rhetoric more palpable, as if they took a beautiful steak, threw it in a blender and then say, "it's nutritious and delicious, drink up.")

They took us into an exam room for an ultrasound. The doctor walked in and said, "I just want to say before we get started that I am an eternal optimist, but I am afraid of what we are about to see, and I feel like I need you to know that." They are words I'll never forget as long as I live. I still didn't know how concerned I should be. The mood was somber and none of us said anything at first. We watched him scan her body from head to toe waiting for him to break the silence and offer a hopeful miracle.

He was gentle and kind. "These are her hands, but her fingers are clenched in a fist, and they should be spread out wide, which tells me her brain isn't functioning properly. This is her heart, and the valves, but the one that is supposed to carry things away is missing. And you can see right here there is a hole in her heart. Her heart is having to work extra hard right now, which is why it's beating the way it is. You can see she isn't moving much, that is because her limbs are freezing up, and soon she won't be able to move at all. And her length has stopped growing, which is why your due date kept changing."

All my husband and I could do was cry. Yet, we still thought there was hope. Maybe she would just need some surgeries. I kept waiting for him to say, "but once she is born, this is what will need to happen." But those words couldn't be spoken. Instead he said most pregnancies like this don't even make it this far. Usually your body will miscarry when so much goes wrong like this, but I was one of the unlucky few in this rare category. We learned she had an entire extra set of chromosomes, a condition called triploidy. Statistically, less than 1% of all pregnancies have it, and most of them miscarry and they only really know about it because they test the tissue after the miscarriage. The unlikelihood of this happening at all was extremely high, yet here we were. And unfortunately, with this condition there are many potential harms to me as the mother.

Because she couldn't kick me, she could die without me knowing and toxicity levels could be very harmful to me. My placenta could rupture, I could bleed out, I could list many more scenarios that were spelled out for us, but it's pointless and personal and that's not the part people want to hear about. I was also at high risk for other additional reasons, for which were the reason we thought we were seeing the specialist in the first place.

Our options were death or death. We were to choose which form of death we could stomach, which form of death was most humane because death was inevitably our only option. There was no other option; no other choice. This was not pro-life vs pro-choice. This was not do I carry out the pregnancy or do I not. The only thought on our minds was life. Mourning her life she wouldn't get, mourning the life we don't get with her. That would all be too simplistic. Wouldn't it be so nice if only it were that simple? I get why people simplify it. I get the discomfort. We all hate death. We all want life.

Here's the thing that simple minded pro-lifers don't do: they judge, ridicule and offer cruelty, yet they don't say, "hey, how can I help?" To the parents who carry out the pregnancy on hospital bed rest so the mother doesn't die as well, they don't offer relief for the medical bills. They don't campaign for good therapy and child loss programs on our behalf. For parents who's child maybe is compatible with life for limited months or years and costs hundreds of thousands of dollars for in-home care they don't say, hey if that's what you choose to do, we will help support you and find funding for you. There's no compassion meeting these families. No proactive movement to follow through with their said convictions. They just repeat garbage rhetoric and then say, "best of luck, glad it wasn't me." And some how they pat themselves on the back thinking they did something right, yet it's so wrong, so cruel, and so very hurtful.

With the guidance of doctors, learning and educating ourselves on all involved, we took time to say our goodbyes. We planned a week of activities to do with her. Took her to all our favorite places around LA. We talked to her, told her what was happening knowing how sick she was. Tried to explain the best we could to both her and ourselves. But ultimately we didn't want her suffering because we selfishly wanted more time with her. My body was basically acting as life support, and we knew our time with her had come to an end. That was our story together. That was our family story.

We loved our Madeleine with every fiber in us. There's not a day that goes by that we don't think or talk about her.

During our last days with her, while we were trying to create happy memories of our time with her, yet knowing it would come to an end shortly, we were attacked by an extreme religious zealot, a family friend no less, who said the most cruel things I will never forget as they surround the entirety of our daughter and her loss. We faced the worst moments of our life, tried to navigate our own loss, grief, and medical concerns, and a selfish, uneducated person came and punched us in the gut with her poisonous words, about a matter she knew nothing about.

We met with a therapist when we got the diagnosis to help guide us through the fog. She suggested letting friends and family know our daughter was sick and our time was limited in order to allow them to offer us support. Yet some took it as an opportunity to cut into us with daggers of false hope that doctors could be wrong, with cruel statements that mothers don't let other people harm their children, and that by not saying this to me it would be a disservice.

We only acted out of deep love in all our actions. We only considered our daughter's pain over our own. Child mortality and mother's dying in child birth used to be quite high, and modern medicine has changed that, so I understand wanting to cling to hope. But life and death is very much a part of life. When grandparents, parents, spouses and even pets are on their death beds, we sometimes act selflessly to ease them out of unnecessary pain. We relieve them of their life support or euthanize them. It's how we show compassion. It's how we do what is humane. And we show it also, to our unborn children as well.

I understand if when faced with these worst moments of your life, facing impending death everyone's reactions and needs will be different. For one, the pregnancies and risks will vary. If some people need to carry out a pregnancy selfishly or unselfishly because they need to let their brain process the grief and catch up to this new reality they face, they should take their time, by all means. The point is, we can't force people by law to govern how they process the worst news of their life. We should meet them with kindness and understand its uncharted territory. "We need to offer the words, "I love you, I'm so sorry you are facing this. Death should come for the old, but sometimes it comes too early, and you can take whatever time you need to accept and face that. That is your personal choice."

We are the faces and stories of the families affected when people try to simplify and categorize people, pitting them against one another as pro-life and pro-choice. We are all for life. We need to change the rhetoric. We need to ensure government does not control aspects of family grief and the health of women, mothers, and spouses who could be left widows and widowers, and children who could be left motherless because of an unsafe sibling pregnancy.

I share my story from a place of authenticity and vulnerability because we, who have been through it, have to be the voice for those who inevitably will painfully go through it after us.

We are the faces and families their votes hurt. We are the lives their votes put into danger and who they wound with their words. We have to change the conversation and painful, damaging, poisonous rhetoric.

I am only a small voice with a small audience. So I write this, asking, pleading with someone of higher authority, with a bigger voice than me, please help protect us. Please fight for humanity and goodness against the poison that is spreading in our country. Please help the church movement to learn compassion and stop simplifying families and death when it's so much more complex than anyone on the outside could ever imagine. Please listen to the families, mothers and fathers, who have faced it first hand.

When we lost our daughter, we vowed to one another and her that because she couldn't live her life, we have to live ours for her. Her life meant everything to us. I'm so glad we got the time we did with her despite all odds and statistics. So I will fight fiercely for her and the world that my son grows up in. I will be a voice for those who cannot.

If there is ever an opportunity to work with you on behalf of other women like me, it would be an honor to serve beside you. I don't know how to start the change, but in my small corner I will try to do my part.

***UPDATE**

Thank you so much to all of you who have taken time to read my blog post helped me spread the word by sharing it with your own audiences. It has already been reposted and reblogged over 20 times, and I truly am so grateful to be surrounded not only by supportive communities who are humane, but who also will fight alongside me in this. I hope we can reach as many people as possible and really create change in the way Americans see death and humanity. And I feel so honored that you would help give my voice a platform. So, thank you friends and friends of friends whom I have never met for sharing this piece I wrote. Feel free to keep reposting!

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Motherhood. 

My road to and through motherhood started with her. It ends with him. And somewhere between the two points I found myself. I found an abundance of uncertainty and found I was capable of accepting it. In a deep, dark space, where answers are non-existent, explanations feel mythical, and loneliness takes on a whole new meaning...that’s where life resided suddenly. And over the years I’ve learned to appreciate the space more. Because it feels full of truth to me. The truth is a lot of things are uncertain in this world, and we don’t have to spend our lives and our time trying to figure those things out that nag at us for answers. We can simply just live and stop asking for answers. There is a lot of peace in that.

The last 4.5 years have felt sort of like we moved to a new neighborhood, where no one speaks our language, and we’ve had to learn to pantomime, or play Pictionary with a pen that skips ink. There has been a lot of disconnect. In the back of your mind you have the source that could connect the lines or dry the ink well completely, and you aren’t sure if that card is worth playing. “...But we lost our daughter.” Do you stay quiet and accept there is always distance, and words will be lost as a result, or do you risk it, say it, and accept that connection may be lost completely. That your game of Pictionary suddenly disappears, the drawings are no longer seen no matter how hard you press that pen, limbs freeze and pantomiming is no longer. 

Are you more alone or did your status ever change to begin with?

My first Mother’s Day felt lonely. And I suppose that’s what brought me to my blog today. All I wanted to do was connect with others online who were also in foreign neighborhoods at the time. So I want to post something this weekend for those who are seeking something to relate to...in the safe spot of their computer or phone...where you can read, alone, but not be alone.

I was 26. And like many young people, I was not impermeable to experiencing a deep pain that spreads through the bones--a deep exhaustion that still pumps through my blood and influences how I parent daily. 

Mother’s Day to so many this weekend is pure, untarnished, and is their first, so full of joy and excitement that plans went so according to how they should. But mixed in the pool, is the mother who has lost a little one. Who maybe still doesn’t have the balance of holding another child. Or who does have the insights of holding another, but still gently longs for who is missing. You see two siblings holding hands, and you know your children’s hands will never meet.

Sometimes, things don’t go as they should. I don’t believe that things happen for a reason. I don’t see my son as a happy ending to our story...as if it somehow concludes there. I see it all as this big part of life that sometimes happens, without explanation, without reason, completely unpreventable, out of our control. There are lucky things and unlucky things. The doctors said we were unlucky. Sometimes our successes are luck, mixed with talent, and fortunate timing. And sometimes unlucky is similar factors. 

I feel lucky to have a healthy son. A little light beam he is, truly. If you met him, you’d see what I mean. So full of life energy...an energy I struggle to keep up with at times because of the weight of death I carry in me I think. Sometimes I wonder if I’d be a better parent for him without this weight...but it’s a pointless wonder (so I move past those thoughts quickly) because he gets me as I am, and I’m grateful for whatever dynamic we create together. And I won’t apologize for carrying the death part around with me...because that is her.

And they are both mine. 

And that is my motherhood path.

And it is rocky, and it is smooth, and it has dark forests, and fields of light and  flowers. 

And lots and lots of flowers.

Photos by Sara Weir

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4 years ago I found out I was pregnant with our first child, Madeleine. We left shortly after learning the news for Paris for a month to celebrate our 1 year anniversary. Life seemed pretty great. It felt exciting, yet quiet. Full of hope, and kindness. We didn't know at the time that we only had 5 months left of feeling like that. That life was about to change dramatically, and the baby girl we were growing to love would never be in Paris again, and with her loss it stole any excitement, most hope, and very little kindness shined through. The quiet took on a whole new form that was anything but nesting. I guess that's why I've been quiet on my blog. I haven't had much to say. I've slowly been trying to break my silence with people by being slightly more social. I've been trying to experience more excitement. I've been trying to find the kindness in people again, and in myself too...death has hardened me at times, and I'm trying to get back to my core of being a softer person. And as I was reflecting on everything the past 4 years has been, I was remembering our dr who helped us through our termination. Because I'm not sure I'll meet many as kind as he was to us. He sat across from us knowing he had to be our eyes and our hands and our emotional support for the worst day of our lives. He said, "It is my job to help you through what will be the worst day of your lives, and not many doctors will do what I do, but I feel it is my duty and calling because I can to help you through this." He spelled out all the emotional triggers that may arise in any given situation and allowed us to decide what we could and couldn't handle, like giving birth to a dead child where I could hear cries of living ones. He said a lot more, but mostly I remember him saying too how he wished he had a separate office to do post op appointments, that he wished we never had to set foot in his building again, but that he didn't, so he'd at least put us in a different exam room. He just got it. He understood every aspect of his job and what his patients went through, and he was kind. A kindness that you don't find in many. A kindness that is saint like in my opinion. A kindness I've never found in any church, and those churches would mostly condemn a man like this. The year we lost Madeleine was an election year, hotly debating abortion, making all our pain and wounds deeper. Nobody wants an abortion. Nobody wants to be in that position. As we are approaching another season of elections, my anxiety is high and my anger is rising as I remember the unkind, thoughtless words written to us before we lost her. It doesn't seem that difficult to be kind, but I suppose not everyone is capable. I wish we could go back to revisit and refresh ourselves in the times of our trip to Paris. But since we can't, I'm glad in this new world in which we live there are doctors like ours who are kind beyond most to help in life's darkest moments. And if I focus on that, maybe it will help me get back to a softer core, where I can try to reflect such a kindness.

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So sweet to see a baby learn music from his dad. Also, love the lighting in this room. It isn't my usual flower post, but it's inspiring in its own way. #piano #music #afternoonlight.

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A Letter to a Stranger

Another teen died this week, and in her death I've seen her being attacked while she lies in a grave. If you haven't read the story yet about this transgender teen, then click on the link to read about her death and her last blog post discussing the oppression she felt in the church and from her Christian parents who chastised the transgender lifestyle, which ultimately led to this child's suicide death. Link is HERE.

It saddens me so greatly to read stories like this. The death of a child saddens me. A child not feeling loved and accepted saddens me. Despite the circumstances, two parents still lost a child, which saddens me. The child's death is very public and becomes a topic for debate, which saddens me. The church's role in preaching love, but doing the opposite, saddens me. I just can relate to so many of the elements in this story, despite my life being very different in a lot of ways too.

But here's what boils my blood. Someone posted the article on Facebook saying it was sad, and someone else commented saying (in my summarized version), "Where do we draw the line, this has to stop. God does not make mistakes, and saying you feel trapped in the opposite sex body indicates God does make mistakes. And I feel the need to defend God, even though he doesn't need defending, but I love him so much I'm going to defend him anyway!" If I felt this attitude was one person, or just a few I'd brush it off and let it go, but unfortunately, I believe this person voicing her opinion here, using a child's death to promote or self-righteous opinions of her interpretation of God is really one voice representing a plethora of others like her.

There are just so many things wrong with this. 

So, dear Stranger, have you ever considered the possibility that this child ALSO believed God does not make mistakes and that transgender was the sexual orientation bestowed upon her by God? That maybe this child, grew up in the church wanting to love people and love the same God you talk of, and just wanted to feel loved in return and live a life of value and purpose not unlike you? You say "where do we draw the line?" but maybe this child and others are trying to tell you they are on the same side of the line next to you, but you are too blinded to see it. To reference Dr. Seuss, it's as if you walk around like yellow belly Sneetches, pointing out who has stars on their bellies and who doesn't, and ultimately it doesn't matter. 

Stranger, you said you felt a need to defend your God, not that he needed defending, but you took it upon yourself to do it anyway, and in doing so you are using a dead child to attack. It is shameful to put it lightly. Cruel and evil are more my words of choice, but I won't delve that far in this small blog post. So, because you felt the need to defend a God who doesn't need defending, I feel the need to defend a child who is dead and can't defend herself. The reason I feel so strongly about this is because I too have a dead daughter who was attacked by the self-righteous church goer in her death. I was told by the attacker that she felt she would be doing a disservice to God by not sharing her opinions. 

Stop. Just stop. You are ruining the church. You preach love and do the opposite. I don't think even the God and Jesus you believe in would do what you are doing. I think if Jesus sat down with this child he would only offer love and acceptance and validation. I think he would have said to this child, the only reason you feel different is because man has not evolved enough yet to accept that there isn't so blunt a line of sexuality that is just their terms of male or female, but the feelings you feel are valid, and you can offer a lot to this world, so do so. I don't think when this child died, she was met in the afterlife by a God who said, man you really got it wrong down there.

Please, church, stop using the death of children to spread your poisonous discomfort of real life. Stop speaking for God and hating in the name of love. It's boring, exhausting, and damaging. If that is your version of God, then don't be so shocked when many others don't want to believe.

If someday my son comes to me and shares he is gay, transgender, or even feels he should be the color purple instead of white, it is my job as his parent to love and support him in that, or to love and support any friends of his who might feel that same way. It is my job to go out and buy purple paint for his skin, or shop for girl's clothing, or kiss his boyfriend if that is how life plays out for him. It is my job to teach him to always love--that if that is not his life's story, he will be the friend who will go out and buy purple paint for the skin of a friend, that he won't shame away from buying girl's clothing for a friend who is a boy, etc. It is my job to do that so that he can thrive and be a functional, outstanding contributing member of society to make the world a little bit better. It is my job to protect him from people like you, Stranger. 

Stranger, the best way you can defend your God, is to learn how to love. Please stop using the death of our dying youth and babies as discussion points for your own agendas. If it is your own child who's death you want to exploit, that is your own prerogative, but please stop using other people's dead children as your scapegoats. Your on going hurtful words are making it hard for me to teach my child to offer love even to people like you. 

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A Birthday Worth Celebrating

Preston turned one this week. The past 3 years have felt really long, and yet somehow his birthday seemed to sneak up on us. This time last year we were in the hospital just so overjoyed that he wasn't in NICU, and that he was perfectly healthy. We were getting ready to leave the hospital, finally, with our baby in our arms, and it felt so surreal. And for most of this past year, that's still how it has felt--somewhat surreal. It's taken a while for us to accept that he's healthy and going to stay with us. 

The panic feeling of encountering Death again still lingers at times, but mostly that fear is easing up because there is no reason to believe otherwise. We have a really happy, healthy toddler, and there is nothing more satisfying to our hearts than seeing our child play actively after we've seen one be still from ligaments that couldn't move. It is certainly a birthday worth celebrating.

We took him to Griffith Park with some friends and went on the merry-go-round, and he had so much fun exploring--and mostly eating dirt.

Of course it's hard not to have moments of wondering how it would all look with his big sister there, but I think she'd want us to all just have a good time. So that is what we are doing, and his birthday didn't feel sad. It feels very separate from her. But the holidays loom around the corner, and are always hard as we approach her anniversary, and now that his birthday is over, my attention is subtly being pulled to hers--it's almost been 3 years.

So continue our cycles of the year. But despite my missing her, I think Preston will really enjoy the holidays this year...especially a Christmas tree with lots of dangling "toys" on it.

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Baby's first #LACMA visit as a member. #nextgen

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First music activity at 3 1/2 months. It makes me so happy. #happybaby #smart #justlikedad

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I feel as though I need to pay tribute to the house we live in. 

Some pre-pregnancy photos to remember it by. The family duplex we helped fix up, the view at the end of our street, and the garden I worked so hard on after our loss.

I may have some of the details wrong, but my understanding of the story is as follows. My great-great grandmother built this place in 1926. She came over from Germany during the war and started a boarding house, renting rooms to other women and children escaping the war. She saved up and bought this little plot, only purchasing half the lot because she couldn’t afford the whole of it. The purchase price was $10 for the half lot. She built this duplex, and it was passed down to my great grandma who lived where we do, and she always rented out the other side of the duplex. On Christmas Eve one year, she died in this living room and my grandma inherited it. She never lived here, but rented it out to several family members and other tenants over the years, and we will be the last to live here since it was just sold and will be torn down in a matter of months.

This is the house we had our babies in. This is where we spent our last two Christmas seasons with my grandma just the 3 of us. This is where our grief has lived. And it won’t be a place we will be able to revisit. We won’t revisit our grief that is here. But we will take elements of it with us. I will re-pot my plants in the back yard to take with us. We will pack up her little box of memories. We will take our favorite lamp in the hall that was an original piece of this house to remember it by. And we will move forward into a new home.

It won’t be a house remembered once it’s gone. It is simple and has odd floor plans. People will walk by this unmemorable home and see the construction and say to themselves, “I don’t even remember what used to be there.” But I feel it should be remembered in a small way through the few photographs I’ve taken because you just don’t have family homes like this anymore.

We have loved living here. But we will also enjoy leaving. It seems symbolic and sad to go, but good too. 

And so I post this to document what will become a distant memory very soon.

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2 Year Anniversary

Jan. 19, 2014 The build up to the anniversary, or other important memorable dates, always seems a bit harder than the actual day. Maybe I spend those days working through the pains and memories leading up to it so that the actual day can be spent with a little more lightness. Or maybe it’s because two years ago today was mostly a blur, and the days before it have the worst memories attached. My memories of today two years ago are waking up, bleeding heavily, in a lot of pain, going to the hospital, laying on the lobby floor ready to pass out and being wheeled back on a hospital bed being asked if I’m an organ donor. "For me or the baby?" I asked. And then I heard my own words and realized how out of sorts I really was. Of course they couldn’t use her organs. The rest is sort of a blur, and yet so clear too. I remember they sent my husband to the wrong part of the hospital when he was trying to get to me. I remember he had to go pick up her foot and hand prints. I remember a nurse asking if she was our first child. I remember it was the only night my husband sobbed and I couldn’t—maybe it was the drugs. In the same way that after we had our son, and my husband initiated and responded to all the texts and phone calls of his delivery— he had to do the same that day too. It was a day of great shadows. And today, 2 years later, we visited her memorial site with our son. And as much as we remember that day there is a paralleled experience for me in it. I remember the ease of that pregnancy and the ability to trust all would be ok so freely. I remember the joy of our first baby and all that entails. I had so much hope then. I like those parts we had together. I like to remember that part of me—that part of our marriage and life. I shared that with her and it’s something I won’t ever feel again with another child, and for that I will always feel a special fondness for her and that time we had together—that bond. Had she not died maybe I’d get to experience that joy with all my babies, I’m not sure, and for that wondering I often feel resentment of the unfairness in life—but I suppose that is normal in grief and early death. I will always resent certain aspects of life from all this. I am grateful to have been able to have a healthy baby when I know not everyone has been so fortunate after their losses, which makes my gratefulness carry that much more weight. I can’t change how life played out, I can only cherish the good parts to maintain feeling a closeness to her and her memory. I try to remember all parts always, but especially today. Today was a good day. It was sunny and nice. I didn’t feel numb. And the sad memories were ok to remember.

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Madeleine's tide pools. It's been 2 years. It was lovely there today. The day of the memorial a group of dolphins swam past us. We haven't seen wild life since then. Today a sea lion hung out in the cove. It was nice to see life again.

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Some baby play time.

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She’s been gone for 2 years, he’s been born for 2 months. Both feel as if they always have been. It feels like they’ve always been with me.

He looks a lot like my baby photos, and I feel like when I look at him I get glimpses of her and what she would have been like, and it makes me happy to see that in him, yet sad too in that it reminds me what I missed out on with her and what she’s missing.

I’m not sure if my heart will ever “heal” from her loss. I'm not sure that's the right word for what it is. I think that part of my heart will always be broken and ache at times, some more than others. Anniversaries. January 11th, January 12th. January 19th. Holidays. I think with time I will learn more and more to accept that aching—even look forward to it as it serves my memories of what I hoped would be for her and us. It isn’t healing that I seek necessarily, but to find balance in my heart amidst what is broken, to maintain the fondness and beauty. I seek the balance of a soothed heart.

A soothed heart doesn’t attempt to remove the unremovable pain. A soothed heart for me means I open myself up to all the joys and all the pain in of their extremes. It’s allowing my son to be a role not of medicine to heal my soul; he is not a “fix-it,” but rather he is separate, and I must create space to allow him to be separate. His presence certainly is soothing. He brings creativity and new purposes back into my life. But he is not “the soother.” He brings lightness to the heaviness of my heart, light to the cracks of my heart, but he does not fix it, nor do I want him to. I don’t wish to put that responsibility on him.

In the early days of our loss, we decided that life needed to intentionally look different, since inevitably all was forever different in that one moment. But we decided that we needed to create a life for ourselves that we would have wanted for her. We needed to live more fully because she couldn't. And we needed to do it for our own sanity and for the benefit of her future sibling.

And two years later life looks so very different, and I think we've been as intentional about those changes as we could be. On the way to do her memorial, these lyrics played in our car:

"So can you understand?

Why I want a daughter while I’m still young

I wanna hold her hand

And show her some beauty

Before all the damage is done

But if it’s too much to ask, it’s too much to ask

Then send me a son."

And now we have a son, her brother, and having him helps balance out our grief in a lot of ways. We have someone who looks up at us and smiles and who brings about a new purpose in being needed. Being around him helps lift our creative dead weight. He lightens our moods so we can laugh and smile more. And yet, as much as I thought and hoped it would help me get through this dreaded week, I still feel teary and sad and want to crawl into a hole until Sunday is over.

It's so strange to feel such sadness and such happiness at the same time, but that is the world of extremes that is life now.

Two years ago we were preparing ourselves to lose her. We were dealing with hurt of an unkind letter. We were trying to make sense of things and figure out how to honor her as we made difficult decisions no one should have to face. 

Two years later it's all just a part of our story that we continue to learn about as life unfolds. We will be taking her brother to her memorial sight and lighting a candle as we always do on rough days, and I wonder what will pour out of me over the years as I tell him about her. I wonder what he will think when he sees me cry every time this year over someone he hasn't met--someone who's blood is in his make up too.

Maybe the words of this blog will help him make sense of things some day.

His 2 month appointment was yesterday, and he is very underweight still. Still under 8 lbs. I'm sort of tired of concerning doctor appointments. I'm just grateful he is here. I wish that was enough.

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Feeling grateful this holiday season. Beautiful afternoon light. Beautiful baby. Merry Christmas everybody!

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5 weeks old today, and looking pretty cute.