Mother's Day

On one hand I know that this holiday is just one that gets utilized by the card companies and chocolate makers in order to sell products. On the other, I've looked forward to this day for so long that I can't even stand it.

It was awful of epic proportions.

Some hold this day sacred, while other's seem to completely dismiss it. In some of my relationships, this day was far less than sacred, while in other's, I was surprised beyond belief at the outpouring of love and even Mother's Day gifts. I also have to say that if I have any friend named Jessica, they've showed up to support and love me. Thanks to Jessica E, Jessica G and Jessica A for their neverending support and love, not just today, but all days. Jessica is a blessed name for me right now!

My mom gave me a priceless book of all the pictures of Rhiannon put together in a beautiful memory book.

I however found myself unable to even buy a Mother's Day card for my own mother because the second I walked into CVS to buy cards, "Rhiannon" started playing on the over head speaker. I WISH I was kidding. I almost ran out of there. I think my mom and grandma understood. I still felt bad. I just couldn't stand there reading cards while I heard "her song" over my head.

I don't have many eloquent words right now, so I think instead I'll post the words of wisdom of those that have gone before me. Not only do I agree with this post wholeheartedly, I love that it was written by a "non-mom". I can even add to this list of all the women we should support during the typical Mother's Day weekend. I know the weekend has now passed us, but I hope that for future weekends, this list is shared. I hope it's shared on Facebook, read by pastor's in churches, celebrated and understood by anyone who stumbles across it. It's not just a stillbirth feeling. It's a feeling that many of us have felt. The idea that Mother's Day isn't quite as easy or sweet as it should be due to the wide variety of circumstances that we all encounter. This day has been bittersweet for years. This year it was just different. Still sad. Just a different sad.

This post by a "non-mom" is titled an open letter to pastors. And I completely understand why pastors are the target audience. I've avoided church on Mother's Day for YEARS, after it became far too heartbreaking to endure year after year. This year was no different. My mom sent me this post and I posted it immediately on my Facebook page, so now I want to share it here. There are 3 points to her letter. Go here to read the rest. 

2.  Acknowledge the wide continuum of mothering.

To those who gave birth this year to their first child—we celebrate with you

To those who lost a child this year – we mourn with you

To those who are in the trenches with little ones every day and wear the badge of food stains – we appreciate you

To those who experienced loss through miscarriage, failed adoptions, or running away—we mourn with you

To those who walk the hard path of infertility, fraught with pokes, prods, tears, and disappointment – we walk with you. Forgive us when we say foolish things. We don’t mean to make this harder than it is.

To those who are foster moms, mentor moms, and spiritual moms – we need you

To those who have warm and close relationships with your children – we celebrate with you

To those who have disappointment, heart ache, and distance with your children – we sit with you

To those who lost their mothers this year – we grieve with you

To those who experienced abuse at the hands of your own mother – we acknowledge your experience

To those who lived through driving tests, medical tests, and the overall testing of motherhood – we are better for having you in our midst

To those who have aborted children – we remember them and you on this day

To those who are single and long to be married and mothering your own children – we mourn that life has not turned out the way you longed for it to be

To those who step-parent – we walk with you on these complex paths

To those who envisioned lavishing love on grandchildren -yet that dream is not to be, we grieve with you

To those who will have emptier nests in the upcoming year – we grieve and rejoice with you

To those who placed children up for adoption — we commend you for your selflessness and remember how you hold that child in your heart

And to those who are pregnant with new life, both expected and surprising –we anticipate with you

This Mother’s Day, we walk with you. Mothering is not for the faint of heart and we have real warriors in our midst. We remember you.

Babies change everything

Do you know how many times I've heard this? Can you imagine how many times I've heard this when I was pregnant? Get sleep now because you won't get sleep later! Better travel now because you won't have any money or patience to travel with the baby later! These are the same people that would nudge Clint in the side and say sorry about your bad luck man, babies change everything including your wife. You won't get her back for a long time.

Babies change everything. They sure do. Whether they live or die. I am amazed at some of the reactions I've experienced since Ree. As if people didn't expect me to still follow the script of a new mom and the changes that come along with that.

New moms are fiercely protective of their babies. They change relationships and boundaries and sometimes redraw the old boundaries because they know things are different now and they have to protect their children. When baby comes home, things change. Old boundaries and negative behavior that you used to look over in other people is now no longer acceptable. That happens to be true even when the baby doesn't come home. Things that have to do with her now at this point are akin to her first birthday or her first moments walking. They are the first and last time I can do them. The picking of the headstone, decorating the grave, sending out thank you cards. They are the ONLY THINGS I have to continue doing, and those events are monumental to me. If those events aren't honored by other people in my life, you might as well act as if you aren't honoring her. And fierce protective momma's can't have that. Lines will be redrawn.

The only thing I have left to protect at this point is her honor and when that can't be upheld by others around me because they somehow forget that I'm going to respond the same way other mothers do, then it is time for relationships to be edited. Everything has changed.

The invisibility of empty arms somehow makes people forget that the same instincts rise in a mother whether or not her baby is here. The same instincts are present for me to protect her whether or not she lives in my house. So for anyone to think that I won't respond the same as any other new mother, fiercely protective and tiger fierce, then they have a need to be educated. There are people right now in my life who are about to be getting an education. I'm sorry for them that they forgot or didn't think that I might respond as I did in the past.

Do you want to know the gritty truth about trauma in families? There are people that eat up the attention. Shhh. Don't say it out loud! It's about as secret as the fact that some people love trauma and are drawn to it for the heightened emotion, even within families. Most of the time it's not the person loving the attention that the trauma happened to but the people around them. The secondary and tertiary family members that are affected by the trauma. There is a part of them that secretly loves it. They love the pity, the attention, the people that turn out to give hugs and food and gifts because they all of a sudden feel important. They feel like they get a pass to act however they want because they are "grieving". They won't tell you this out loud but you can see it easily. You can see it in the selfish reactions that hurt the person that the trauma actually happened to, because they are so blinded by what they need in that moment that they forget that there is a hierarchy here of impact.

I remember a theory when it comes to grief, called "Comfort In, Dump Out".

You take the people that the trauma actually happened to and put them in the center circle. Then you take the secondary people in their lives, their parents, their friends, grandparents, family, they are in the second outside circle larger than the first. Then you draw another circle and these are people that are extended family and so on. The fourth circle and on out are acquaintances or strangers.

This part I will quote because there is no reason for me to reword it

Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring.

Everyone else can say those things too, but only to people in larger rings.

When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn't, don't say it. Don't, for example, give advice. People who are suffering from trauma don't need advice. They need comfort and support. So say, "I'm sorry" or "This must really be hard for you" or "Can I bring you a pot roast?" Don't say, "You should hear what happened to me" or "Here's what I would do if I were you." And don't say, "This is really bringing me down."

If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that's fine. It's a perfectly normal response. Just do it to someone in a bigger ring.

Comfort IN, dump OUT.

Complaining to someone in a smaller ring than yours doesn't do either of you any good. On the other hand, being supportive to her principal caregiver may be the best thing you can do for the patient.

Most of us know this. Almost nobody would complain to the patient about how rotten she looks. Almost no one would say that looking at her makes them think of the fragility of life and their own closeness to death. In other words, we know enough not to dump into the center ring. Ring Theory merely expands that intuition and makes it more concrete: Don't just avoid dumping into the center ring, avoid dumping into any ring smaller than your own.

Remember, you can say whatever you want if you just wait until you're talking to someone in a larger ring than yours.

And don't worry. You'll get your turn in the center ring. You can count on that. http://www.latimes.com/news/opinion/commentary/la-oe-0407-silk-ring-theory-20130407,0,2074046.story 

People have started dumping in the center ring. Either by direct harm or absolute utter selfishness, labeled as something else entirely by the people doing the dumping. Because, you know, they're grieving too. If they can't contribute, then get out of the rings and start your own. Or dump out. Find your outer group to dump into, but don't dump on me by telling me you can't support me because this is too hard for you. Or you can't honor commitments to things that have to do with Ree and her memory, planned events surrounding my daughter and her life, because of course "she's dead and we have to continue on with our lives supporting the living".

Well. I'm living. Don't I count?

You're right. Babies Change Everything.

The Mythical Land of Babies

I feel surrounded by commercials and reminders and updates that Mother's Day is coming. For a kidower like me, it sounds about as ominous and dark and terrible as "Winter is Coming". And I don't even get a direwolf (if you aren't a Game of Thrones fan, you won't follow that one!).

I know, I know, Mother's Day is coming. I'm fully aware. It feels like a holiday full of myth and fantasy for me. Every Pampers commercial that shows me babies teetering and attempting to walk towards their mom just makes me wonder if those people know how miraculous it feels that babies live, much less live long enough to try to learn how to walk, or smile back at their moms. It literally feels like a unicorn fantasy. Babies don't live. Pregnancy doesn't end in a happy positive ending. Stop spreading that rumor Pampers!

I want to walk up to every single pregnant woman I know and just shake the daylights out of them when I hear them talking about getting ready for their babies to arrive. They talk about buying diapers and preparing the nursery and trying to figure out how to work the stroller. I want to just shake them so hard and tell them to stop being so naive! Stop being so sure! Stop thinking that you've got this in the bag! This is no sure thing lady and you need to stop thinking that it's obvious that this will all end in smiles and babies. Stop acting like you know the outcome and prepare for the idea that a baby might NOT come home with you and those diapers will continue to go unused.  Pregnancy does not = baby. Sorry to tell you. That is a myth.

Of course I never speak it out loud. But I think it every. single. time I see a pregnant mom post on Facebook candidly about their excitement or their plans or anxiety over picking a name/finishing the nursery/washing all the baby clothes. I think it constantly. I feel compelled to reach forward and type out on my keyboard in response that they need to stop being so ridiculous and planning for the best outcome. It may not end like you think it will. I don't do that and instead I write it here where I am allowed to express every dark thought that scares the living daylights out of most parents, much less expecting moms. I know they want to avoid me right now and they are fearful that I'll rub off on them somehow and "cause" them to have the same ending that I did. As if being aware that stillbirth happens somehow makes it happen to you.

Knowledge doesn't cause things to happen to you. It simply prepares you. I want to prepare these moms. But I don't. Because on Mother's Day this year, they'll rub their stomachs and anticipate holding a baby next year, or they'll hold their babies this year and celebrate their first Mother's Day ever with a real live baby.

I had the same dream last year. Clint and I sat around talking last May about how we would finally be parents on Mother's and Father's Day in 2013. We were on the cusp of adopting and she was due at the end of June. We wouldn't pass another year without being parents, finally. She came, and then she left. And then we learned of Ree and we knew, yet again, that we would still finally be parents. And this year it looms and we've lost two children before that next Mother's Day ever even came around again. What a ridiculous conversation we had last year, assuming anything would be real and final. The crappy part is that Clint experienced it too. We went through adoption AFTER we passed both Mother's Day and Father's Day as well. So when June heads towards us, he'll have the same feelings. You feel pretty ripped off.

I still feels strongly that many people don't quite grasp how miraculous having a baby, a live baby, really is. One that isn't dead, or going to die soon after birth, or who isn't facing a life ending disease or complication within a year of their birth. They don't know how insanely ridiculous it sounds to just assume that you have children or that they will just be healthy. Every time you hear someone say during pregnancy that they just want a healthy baby, they usually just mean it as an expression so they don't have to say out loud "no I really really want a girl but I don't want to say that to your face and look ungrateful so I"ll just say we want a healthy baby".

When you hear me say it next time (because by god it will happen!), you'll know it's not just a phrase for me. It's not a recitation of socially correct pregnant woman statements. It's for real. I only want a healthy baby. In the spirit of Game of Thrones, when Daenerys had a stillbirth, she got 3 dragons out of the deal. Do I get those soon? Are they coming from Amazon? Where do I get my dragons? She's not even the only character on the show/in the books to experience stillbirth. But because it's a story wrapped in fantasy, people still think that it's a myth that eludes them in this day of health and awareness. I want to tell them that they believe a lie. The myth is that of the healthy baby, always born at the end of a healthy pregnancy. It just doesn't always work that way.

I really don't know what to do this year. It's always been hard. It's been hard for the last 5 years. I've had plenty of years crying. We don't even attempt church anymore near Mother's Day because it's a month long occasion culminating in nothing but recognition of the Mother's in the audience. They never recognize the women who want to be mothers but aren't, or who have children that don't rest in their arms. The mothers of babies they've miscarried, who were born still or who only lived minutes or days. Or even (gasp) the women who have experienced abortion. Don't kid yourself into thinking that Mother's Day isn't gut wrenching for them. Or Birthmoms who chose adoption because it was the best option at the time. It doesn't get any easier for them either. No, we only celebrate the moms with living, screaming, cooing babies and children. If you ever see it celebrated otherwise, drop me an email. I'd love to know that others out there are recognizing all the different forms of "Mother".

Part of me wonders if I had to experience this because one day we will still adopt and I"ll be as close to relating with a birthmother as I ever could be. Yes, yes I have lost a child. I do know what it feels like. I didn't even get a choice in the matter, or 3 days to decide if I thought I could be a parent. I didn't even get that. But yes, I can relate to what it means to lose a child, whether by choice or tragedy. Maybe I'll have a level of empathy for her that I never would have before, although those that know me well know that I am a massive champion for birthmothers. We had a bad experience with one. But she was one human, not all birthmothers.

Anyways, I"m lost on what to do this year. Do I bravely plow forward into society, and go out to a restaurant and surround myself with the facts of life because I can't hide in my house no matter what I've been through recently. Do I make my mom and mother in law suffer because I just can't do it this year? How fair is that to them? They are still mothers too. Do I hide at home instead and beg for one day to be secluded from the reality of all the things I am missing? I really don't know what to choose.

In a cruel twist of fate, I am due to start my next cycle on or around Mother's Day. If I'm not pregnant, it's yet another reminder physically, right on the actual day, that I'm not pregnant. Universe, you are not funny.

Voyeurs

I thought since I talked about this in my last post that it would be helpful if I clarified exactly what a voyeur looks like. We have had a couple of people who have found out our story that stand out to us as either predatory or clearly having bad intentions. They find out through a friend of a friend or they are friend of a family member and so on.

Some have emailed us, some have found our blog and email through there, some have left comments that we've deleted.

But you know someone is a voyeur when they say things like this in a Q&A interview style fashion, for an interview you never signed up for in the first place. These are snippets of questions that obviously have more content in the actual full message.

"What does it feel like to lose a child"

It hurts. It's sad. You don't really deserve to know much more because you're not really truly asking me how I feel, you just want to know what intense emotions I'm feeling as if this is a movie playing out in front of you.

"What does it feel like to have to go through labor knowing that your baby is dead. I could never do that".

Like you get a choice? I'm not sure exactly how they thought we were going to opt out of that one. The "I could never do that" lines don't help. It's not like you get a choice in much of it at all. Its happening whether you like it or not.

"Do you think your marriage is going to survive this"
Or
"Do you think that you will get pregnant again"

I have a crystal ball and can tell you the future. If you want to know the answer to this and believe I can tell you the answer to this and all future questions, why didn't you ask me what the lottery numbers are next week?

The majority of people to contact us, strangers or not, instead word questions like this:
"How are you doing"
"I'm thinking about you"
"Do you need to talk? I'm here"
"We would love to take you out to lunch or come over to your house or talk about Ree or go to the grave with you"
"I know it's been X number of days or X number of weeks and I was just checking in because I know this day or that day or this anniversary etc. is hard for you"

"We've never met but your story really touched me"
"We've never met but my church is praying for you. Or my family. Or my coworkers. Or just me"
"We've never met but I've been through the same thing"

Voyeurs want to know what it's like. Friends, family, and people who care want to know how you are. And how they can help or that they just want you to know they haven't forgotten. Voyeurs aren't even interested in conversation.

I promise if you even have to stop and ask yourself for even a second if you fall in the Voyeur category, you don't. I'm a strong believer that people who typically act like that are so unaware of how they come across that it wouldn't even have crossed their minds if they were to read this blog post that it might apply to them. Anybody who does ask themselves this question: you should know that it doesn't apply to you. Voyeurs are not very self-aware And they don't really care if they are one in the first place

Those that know. And those that don't.

I said it often in those first few days after Ree died. I said that I wished we could all wear signs around our necks when we went out into public that proclaimed our recent loss and explaining why we needed them to be gentle with us. To not rush us in the checkout line or jostle us in the aisles. We needed people around us to be gentle and to be aware and mindful and truthfully, this kind of wish was never going to be granted. I wanted a sign that told people to proceed with caution. To be gentle. It was ok with me if we all wore our own signs. The man that wore one that would say "Divorced after 34 years of marriage". The teenager who would write "recent cancer diagnosis". The middle aged woman who would write about her husband's recent infidelity. I wanted to take all of these people who didn't know about our recent loss, and move them to a category of those that do know. Those that do know seem to act differently. Although sometimes this isn't always a good thing.

Those that know sometimes extend us compassion. More compassion than normal. More patience or understanding. Or they gift us with their time and sit with us. Those that don't know are often more abrasive and completely unaware that there are people around them that hurt. They seem to bump into others in the world with little regard to the bruises they leave behind.

Those that know the loss of a child themselves are a special category of people. They know things, things that I don't have to explain to other people. They just know. And sometimes I need to avoid these people because I don't want to think anymore today about what this all feels like and how I'm going to cope today. I admit that sometimes I don't want to read their blogs or their Facebook posts because I need distance from all of their grief too. They know, and sometimes I need to be around those that don't,.

Those that don't are a tricky category. They don't get it and they don't know, and those people are a welcome relief on the days when I don't want to be the "mom who lost her baby". When I can blend in to the crowd at Target and I don't have to answer "How I'm doing today" for the 50th time to a person who really doesn't know me all that well. Sometimes I think those that know want to be a voyeur. They want to witness and watch our pain because it fascinates them. They either haven't been through anything like this or they just want to crane their necks in curiosity like lookie-lou's who need to slow down traffic to get a glimpse of the traffic accident. They barely know me but they send messages often asking for updates but rarely offer much in the way of support. They just want to KNOW. They don't want to pull up a chair and talk.

Those that do know and want to talk, they are rare. They fit into the inner circle of people. Truthfully I don't have much energy to update people who aren't in the inner circle because I just can't answer again today why I'm feeling the way I do when they aren't going to provide respite.

I'm convinced that our therapist doesn't know shit about grief or bereavement. She seems to have experienced her own losses in life. Maybe it's the fact that she's almost 60 so she expects me to look at the world through the same lens, the lens that says that we all make it through these things. I'm not sure. I just know she's rushing me. It's been 6.5 weeks. I'm not in the place she seems to want me to be and instead I just want her to be ok sitting with my sadness. Instead, she seems to want me to wrap my head around all the "gains" that come with losses, as if I'm in a place to see what I'll gain from all this. I already told her that nothing I gain at this point will outweigh the loss of a child until I am actually a mother. I am not ok making it to the end of my life and the only gain I experienced was more empathy for others or the ability to help my clients. That's not enough of a gain for me.

She also doesn't seem to know how to talk to those that experience infertility. She's already asked me to have patience. To relax since stressing will hurt the process. We got pregnant with Ree at quite literally the most stressful time in our entire marriage during the adoption process. She's told us to take time and not try to get pregnant for a year or two. We don't have time to take off, and certainly not a year or two. She asked today if I thought that maybe this is the universe trying to tell me that we don't need to be parents. Or that Ree shouldn't have existed given all of the genetic issues facing us in our families with mental health issues on both sides. She outright asked if I could accept that maybe we shouldn't be parents. Or maybe Ree wasn't meant to be brought into this world. Perhaps this is true. But it's not the right timing to approach this line of thinking with me, and it certainly didn't help my stage of grief. Or guilt. It certainly doesn't help me to press forward if I'm telling you that the one thing that will help outweigh the grief is to become a parent, and you pose the idea that maybe I'm never meant to be one. I'm not proclaiming the impossible here, like plans to become President.

I don't think I'm going back to her. Why are there so many awful therapists out there? She falls in the category of "Those that don't".

Pity Party. You're invited.

I want to throw a huge massive tantrum and pity party and I'm not sure how to stop. You can be invited, it's pretty open for everyone to see.

Our Therapist this week seemed focused on how we can't give up and how just because we don't have the money NOW to do IVF or Donor Eggs or Adoption, that it doesn't mean we won't in the future.

For some reason, it's not comforting to hear that we can still have kids...one day.. just not yet. Later. We don't know when. We don't know how. We won't know if it's 10 years from now if we can afford any interventions. At that point, my body will be completely done since it's on the brink of menopause now.

Ree was supposed to be our in a million miracle. What if she was it? How long do we focus on fertility and treatments on our end before we quit that all over again to move to adoption? And then how long will we wait for that match?

We were challenged by our therapist to realize that we can't always have what we want when we want it. That we may not be able to have kids NOW.

I really have no idea how to shut this drive off, or to tell my emotions to just wait and be patient. I just want to scream that I've already DONE THAT. I've already waited.

I put in my time. I waited patiently for the treatments to work and the doctors to help and for the birth mom to decide if we were right for her. I waited through all of pregnancy. I even waited through labor. I've already waited. But it's a tantrum if I keep saying "it's not fair" and "I want it now" and "I don't want to wait". I have to realize that none of those things matter and I can cry all I want, but it won't make time speed up or finances change or situations to drastically improve.

It doesn't matter if I want it now. But I do and I don't know how to not want it right now. When I tell our therapist that I feel paralyzed trying to decide, she tells me to wait. I don't want to wait. I can't wait. It doesn't seem reasonable to wait given how low my egg counts are.

I'm having a tantrum today. I want it and i want it now and apparently I need to grow up and accept that I cant. And that I may not for years.

Walk forward gently, with love, kindness and information

I just read a post at Still Standing about the awful predicament that we Kidowers face after baby loss. We tread a thin line. We endeavor to carry the information we've discovered to the rest of the world in order to prevent other parents from joining our ranks. But we also must stay highly aware of the fear that our situations often incite in others, especially pregnant mom's, their partners and the family surrounding these people.

Our aim is not to cause you to fear. We know deep in our souls that your worst fear is that you'll experience what we did. We know our story is hard because you hope you never become us. You are sometimes even afraid of us, as if just telling you our story or information will somehow rub off on you like a wicked genie who grants nothing but nightmares instead of wishes. It's not catching you know.

We wish you don't join us. We'd like our membership numbers to remain small. We advocate for the rest of the world to never enter our club. We would be really awful at selling people ice cream in the middle of a heat wave.

We know you are already afraid. You are afraid of huge fears and risks like major complications in birth or seeing something on an ultrasound that will forever change your life. We know you are also terrified sometimes of the small things. Like the fear that you'll never fit into those jeans ever again or that you'll have to throw away every single pair of shoes you own because your feet grew in pregnancy (Yes. They will stay that size!). You try not to fear, but it's natural. It's a mechanism of parenting, to become aware of the threats in the environment so that you, as a parent, can minimize or vanquish those threats to your precious innocent children.

Please, let us help. Let us help minimize those threats for you too. I know our stories are scary. And painful. And tragic. We know, we lived it. We remember. We know you want to be only excited and joyful and we want you to have that.

When we tell our stories or our experiences or our research, we are trying to tread lightly, to approach it all with an understanding that inciting fear will help noone, and our only concern is to help and prevent. Forgive us if we become passionate about it because we feel quite passionately about things now in a way we didn't days, months, years ago. Our passion can be overwhelming to you. We know. We want to teach you, but teach you gently.

We want to teach you that there ARE signs that you should not ignore. You might google symptoms and find yourself on internet message boards and due date clubs and you keep getting responses to "not worry about that, my baby came out fine". Please ignore those women. I know they mean well and they are hoping to just calm you down, but sometimes ignorance and bliss lead to ignorance and death.

I googled hiccups when Ree was around 32 weeks. I wasn't even sure what I was feeling and for some reason I thought it was a heartbeat, but it was too rhythmic and it was different from a heartbeat. I landed on the obvious: she was having hiccups. I read a few pages and did land on a site where someone mentioned a correlation to cord issues. The rest of the entire board dismissed these fears for this woman, saying over and over that their babies all had hiccups and turned out fine. Hiccups were cute. I dismissed my fears as well.

You can imagine how sick I felt around a week after Rhiannon's death to stumble on research that showed the link of hiccups and cord entanglement. I had read it myself and dismissed it. I didn't want to be a fearful mom, wracked with anxiety the entire time. I wanted to just let it go and stop worrying. Because surely nothing could happen to me when we hit the home stretch of viability. It was hiccups, nothing more. Stillbirth only happened in the 1800's when we had poor medical care.

I was you. I even went as far as finding the information and then rejecting it. Only now do I pay heed to the symptoms and see the signs I missed. If I had only known, she could be here today. If my MIDWIFE had known, if the DOCTORS had known, she would be here. I was not the only one ignorant in my situation. It appeared that everyone around me was as well.

So please don't let us scare you, but let us help. And help us to know how to walk forward gently, to carry our flags and candles and banners and rainbows in a way that doesn't overwhelm you and make you dismiss our assistance.

Know the signs of cord compression
-More than 4 period of hiccups in a 24 hour period
-Less movement than your babies typical pattern
-Increased or VIOLENT movements that vary from their typical pattern
-Restless legs at night, or a sensation that even at rest or relaxation, your legs need to "move".
-Longer times to pass Non-Stress Tests or NST's. Baby may pass the test, but if you consistently require a sugary drink or extra time to pass, this is a sign of compression
-A "Lazy" baby with little movement throughout pregnancy.

You can consistently have strong or high fetal heart tones throughout pregnancy and still have a cord tangled around the body. The cord itself may not compress and cause death until labor actually begins. Heart tones are not reassuring on their own, or a way to rule out compression.

The umbilical cord CAN be see on ultrasounds and it can be vividly seen with a color doppler that can assess both the level of entanglement around the body or neck, as well as the level of blood flow or decreased blood flow. Just checking for fetal growth, size and weight is not enough to evaluate if the cord is being compressed and carrying nutrients and oxygen to the baby. It can be seen and it does not require a 3d level ultrasound to see it.

I had a scan at 37 weeks. They missed seeing the cord, did not order a color doppler despite the lack of movement completely for over 24 hours and the long times to pass the NST's. Had the sonographer just turned on the color doppler, we could have easily seen what could have saved her life. I was on the sonogram table for over 45 minutes evaluating, measuring, scanning. We had tons and tons of pictures taken. We passed 8 out of 8. Yet she died 3 weeks later because color dopplers are reserved for high risk patients. Guess what. We're now high risk. It took loosing Ree to be able to get the "right" to a color doppler in the future, despite fitting criteria medically to order that type of scan during this pregnancy.

If you have any of those symptoms, especially with decreased movement, don't just get a BPP (Bio Physical Profile). Demand the color doppler. Who cares if insurance doesn't cover it! They also don't cover a funeral for a stillbirth or autopsies. Get the doppler, screw the cost.

STARS Study and Star Legacy Foundation

A group of doctors that has done almost all of the research on stillbirth are doing a larger scale survey of both mothers who have and have not had stillbirths. I would appreciate if you fit in one of the categories below, if you would put in your information so we can see in the future if there are trends for mama's like me (and there are) so we can start to prevent more loss in the future. Star Legacy is where I started to find the first links and research about cord compression and Dr Collins in Louisiana. They were the first to give me real answers beyond "we have no idea what happened, we couldn't prevent it".

So if you are pregnant in the third trimester, if you have a newborn/newborns, or if you've had a stillbirth. Stillbirth women are then broken down into within the last 3 weeks and more than 3 weeks since delivery.

Eligible women:
Is currently pregnant at 28 weeks gestation or more OR
Has delivered a live born singleton baby at 28 weeks gestation or more in the last 3 weeks,
OR
Has ever delivered a stillborn baby at 28 weeks gestation or more
http://starlegacyfoundation.org/stars2/

The STARS StudyStudy of Trends and Associated Risks for StillbirthIRB# HUM63655 

You are invited to take part in this research study. This form tells you why this research study is being conducted, what will happen in the research study, possible risks and benefits to you, your choices, and other important information. If there is anything that you do not understand, please ask questions by calling a study coordinator at 952-715-7731 or by email to STARSstudy@starlegacyfoundation.org. Then you can decide if you want to join this study or not.  
WHY ARE WE ASKING YOU TO PARTICIPATE IN THIS STUDY?You are being invited to participate in this research study because you have delivered a living or stillborn child at 28 weeks gestation or more or are currently pregnant at 28 weeks gestation or more.  We are needing information about your pregnancy and delivery to learn more about differences in experiences that will help to identify potential factors associated with stillbirth.   It is important that we have participants who are currently in the last trimester of their pregnancy, mothers of infants born alive AND mothers of stillborn infants.  We encourage you to invite your friends to participate in this study as well.
A total of about 3000 mothers are expected to participate in this study world-wide.

This study is supported by the Star Legacy Foundation for Stillbirth Research, Education & Prevention and approved through the University of Michigan Institutional Review Board and is under the direction of a panel of distinguished and experienced researchers including:
Study Team (in alphabetical order):

• Jason H. Collins, MD, MCR – The Pregnancy Institute, New Roads, LA

• Alexander E. P. Heazell, MBChB, PhD, MRCOG – University of Manchester, UK

• Jennifer Huberty, PhD – University of Nebraska Omaha, Omaha, NE

• James A. McGregor, MDCM – LA Best Babies Network, Los Angeles, CA

• Edwin A. Mitchell, MD, FRACP, DSc – University of Auckland, New Zealand

• Louise M. O’Brien, PhD, MS – Sleep Disorders Center, University of Michigan, Ann Arbor, MI

• Mana Parast, MD, PhD – University of California, San Diego, CA

• Tomasina Stacey, RM, MPH, PhD – University of Auckland, New Zealand

• Jane Warland, RN, RM, PhD, – University of South Australia, Australia

• Lindsey Wimmer, MSN, CPNP – St. Catherine University, St. Paul, MN;  The Star Legacy Foundation

Study Coordinators:    

• Sherokee Ilse – Star Legacy Foundation

• Shauna Libsack – Star Legacy Foundation

• Candy McVicar – Missing Grace Foundation

• Marti Perhach – Group B Strep International

• How can I learn about the findings? – The researchers will be writing papers regarding their analyses. We will definitely share any and all official findings on our website and on our facebook page. If you would like to receive an email when these findings are published, send an email to:info@starlegacyfoundation.org.

If you have other questions regarding this study, please contact lindsey@starlegacyfoundation.org 

If you don't know much about Star Legacy Foundation, I'll post their "About Us" and let you link and read more there. They are dedicated to Stillbirth Research and Education

Our History

On July 31, 2004 our world came crashing down when Garrett Jamison Wimmer was born still due to an umbilical cord accident.  He was to be our first child and grandchild on both sides of his family.  He was wanted.  He was loved.  He was born an angel.

We were shocked to learn how frequently otherwise healthy babies are stillborn in the final weeks and days before their birth.  We were concerned that expectant parents aren’t even told about stillbirth risks.  We were saddened to learn that little research is being done about the many stillbirths categorized as “cause unknown” and yet believed to be due to umbilical cord and/or placenta issues.  Modern medical technology makes it possible to identify umbilical cord and placental issues in the third trimester and to manage those situations to a joyous outcome, yet employing those technologies is not current obstetrical practice.  We believe this must change in order to give these babies their first breath and their families the joy that only a new child can bring.

When your Daughter lives outside

I know, I know, she doesn't live. I got it. It's a figure of speech. She doesn't really "live" outside. She rests outside. She's buried outside. But forgive me when I wrote that out and a few other forms of that sentence and I just couldn't stand it, so I went back and wrote lived.

When your daughter lives outside, you are a slave to the elements. You cannot visit her when it rains sideways in sheets. Or when it's 20 degrees. You can visit your daughter when the weather is nice or when you can stand it long enough. Or when the ground is firm enough to allow you to walk to her side. Sometimes you can drive to her, but the soft muddy ground itself will prevent you from actually sitting with her.

When your daughter lives outside, any gift you bring her can be shattered by hail, ruined by sun/wind/rain, stolen by thieves, trashed by drunk teenagers. Her Easter basket can be placed one day and you'll wake to a massive thunderstorm the next morning complete with rolling thunder and hail and you'll find yourself finally mad at God for the first time in a month since this all started. NOW you want to send a storm?

When your daughter lives outside, you can't protect her, ever. She doesn't rationally need protection, but try telling a mama that. Have you ever had to spend 9 months preparing to protect something with your very life, something you would trade your soul for in order to shield and defend? You'll find it's pretty hard to just turn that off. You'll have so little left to protect, that her very memory is sometimes all you have to defend, and her grave the only tangible, touchable thing you can safeguard. You have no baby to watch and put under your wing to give sanctuary to in the storm. In a literal storm, your daughter will live outside and you can do nothing to protect her. You had one job. Just protect the baby and keep her alive. You already failed at that. You had one job, and you couldn't even do that one right. Of course now you feel hyper-protective of anything that involves taking care of her. You can't take care of her. You can tend to a 10x10 plot of dirt for the rest of your life. That's what you can care for now.

When your daughter lives outside, you'll find it damn near impossible to stop yourself from clawing your way under all that dirt, down to where she now "lives" just to hold her one more time. That probably sounds horrible, but it's all you have and you want it again so badly. You'll want to sing her lullabies but you know you would sound ridiculous sitting in this field singing. To yourself. Because nobody is here to hear it.

When your daughter lives outside, it will be unbearable to know that when it get's dark, you can't turn on a nightlight. The darkness will consume the cemetery and even the small solar lights won't make a dent. The irrational part of you says that if you need to come see her, you won't be able to see enough to find her. Or even worse. What if she needs you, it will be to dark for her to find you in the middle of the night. Regular mama's worry about this when their children are sick or have nightmares and need to wander down the hall into their rooms to find mama to make it better. What if it's too dark and mine can't find me? Rationally, not only does she not need to find me, she doesn't even need me. She lives outside, where mama's don't stay and where they don't rock crying babies back to sleep and where she doesn't need me to take care of her.

When your daughter lives outside, you'll need something "to mother" or be a "mama to" since you have nothing left. Your dog will have to stand in for now. Because my dog can live inside. He sleeps in my bed, sits next to me while I eat and even when I take a bath. My daughter won't, she's down the road in her bed of dirt.

When your daughter lives outside, she is forever locked into one location. You may travel the world, see the sites, experience the wonders. You may freely get up and gather your belongings and move to a new town. My daughter will not. She lives in that plot and she is never leaving. I understand that for some people, she isn't there, or she now lives elsewhere, or she is now "everywhere" and part of the greater Universe. Please don't say that to me. If you were there the day she was lowered into the ground, you SAW her in that grave. You know, like I do, how vivid that memory is to see that tiny casket in a hole dug too large and too massive for her. Her spirit or soul may not be there, but don't tell me my daughter isn't there. I watched it. I will always be forced to travel to this spot to be with her. My daughter can't go with me to see all of these things. Don't tell me my daughter isn't here in this place when it's all I have left of her. Don't take that away from me too. This place is all I have left. It isn't comforting for you to tell me that she isn't here. That makes it worse.

My daughter lives outside, but she lives in one place and she isn't moving. Please don't tell me she's in heaven or with the angels so she can see everything. If the theories are correct, there is no pain in "heaven", so she doesn't sit up there watching us all down here. That would be too painful. If she feels no pain, she doesn't see me missing her, waiting for her to breathe just once, knowing it's never going to happen. She doesn't watch over me, sit with me, walk beside me or guard me, no matter how desperately you want to tell me that because it makes you more comfortable and you squirm over the idea, the feeling that I will always be apart from her while you hug your babies every day. I hope you hug them every day at least. I am separated from her. I can stand this, I can handle this, I can bear this. You don't need to make it go away that I am completely separated from her, both body and spirit. Her soul doesn't watch me in pain if hers is in peace.

My daughter's soul lives somewhere outside and I don't even know where that its. I don't know where she is or what it looks like. I can't tell you what it's like to be there. That's horrible as a parent. I don't even know where my daughter is and what she does all day.

When your daughter lives outside, you have to make plans to visit her. You have to actually rearrange your schedule and fit in extra time just to be with her. She isn't part of your daily life, from waking to sleep, where you can reach out and touch her at any time. You must make time. You leave early so you can drive by the grave. You'll panic if you leave late and play the guilt game in your head on whether or not you have enough time to go by there anyways even if you are late. Because how can you drive past her graveyard and not drive in? You literally pass it every single time you leave your house or come home. How can you just drive by her and not stop?

When your daughter lives outside and you know the maker is responsible for the rain and sun and stars, then you'll find yourself rationally furious and irrationally furious all at the same time. You never got mad when she died. You didn't blame him for her death, for taking her from you. Death happens, accidents and Carol all happen. Carol is the midwife, who you'll find yourself blaming for her death far more than God. Carol actually had hands on. God didn't. But when he controls the hail and the rain, then you'll get mad. He just watched you put that Easter Basket out there yesterday. Did he really have to send that storm tonight, in the middle of the night, when the ground is already too muddy for me to walk to her grave now, and there is not enough light for me to see. You  can't frantically run out to her site like a mad woman in the middle of a hail storm just to rescue her flowers, but you'll want to.

Today you want to go show off your newborn to people on Easter Sunday and dress her in a ridiculous outfit that definitely involves a tutu because you are obsessed with baby tutu's. You can't do that today because your daughter lives outside. You'll want to at least go sit with her, in some peace and quiet while the rest of the world woke to Easter Baskets and hunting eggs. But you can't because you are separated by a sea of mud.  Because you picked the spot in the graveyard that didn't have a ton of other graves. You picked the remote spot in the back by the fence so you could sit with her in peace. You picked the spot where cars wouldn't constantly drive by and potentially even hit her gravestone or ruin her flowers. They haven't even put in a walkway yet on this part of the graveyard.  And now you can't get to her. She lives outside and the most you can do is sit in your car and stare.

Easter 2013. I would buy you all the baskets in the world

Am I crazy when I still count the days since Ree's birth as if she's still alive? As if she's really 3 weeks old and this is really her first Easter?

I know she's not here. I know her first day on the planet was her last day and all of that, but I guess half of my mind (the part that therapists' would call denial), is in a space that acts as if Ree is alive and this is her first Easter. This is her first holiday.

When we were pregnant, I remember thinking that I didn't know what we would do for Easter since I would have a newborn and who really needs to waste money on an Easter Basket and outfit for a 3 week old? I had planned on not doing anything, or doing something really small (probably eating a Cadbury egg in her "honor"!). I really thought it was silly to do something for a child who would be sleeping 20 hours a day and would have no idea that she was missing out on an easter egg hunt.

Now she sleeps 24 hours a day. And the best basket I could give her was a ceramic basket full of fake flowers that we can change out on her grave as the holidays pass us by, month by month, season by season.

I feel horrifically guilty that I didn't want to give her a basket. Now I can't and I desperately want to. I really do feel guilt beyond measure that I was going to deny my child something like a silly plastic basket full of candy I would eat anyways.

We spent today with our parents looking at headstones for her grave. We found a place our family has already used in the past. They have a "great" selection, if you can ever say that there are great selections for a gravestone for an infant. They are really nice to work with and are local and we spent time talking to the craftsman himself who would be doing all the design and engraving.

Today I spent hours looking at a design for an incredibly costly stone that will mark her location forever.

I wanted to be in line today with screaming toddlers who either didn't want a picture with the Easter Bunny or just really needed to pee, or both. For some reason, the basket was negotiable but the pictures were not. She had to have a picture with a man in a bunny costume. I have a friend who had twins the same week Ree was born. Her boys are 4 days younger than Rhiannon. Each picture reminds me of what she would be doing at this exact moment. And it reminds me of what she's not doing and what she'll never do and how painful it is to realize that she would be aging past the one day where I held her. She would be growing and I would be marveling at her every movement and tiny inch of growth. Instead her image is frozen in time. I wish so much that I could see what she would look like at 2 years old and 12 and 22.

 I only know her one way, yet in my mind she still ages and I mark time as if she's now "3 weeks old". She's not 3 weeks old. She'll never be 3 weeks old. I'm not sure how to make a mother's mind switch to "3 weeks since her death" since it's the only marker I have of her life. I know for parents of small children, they'll have a similar experience, except they had some measure of time for their death. They lost a 2 year old and time is marked in the days or months or years since their death. For me, it's just that she was born, and as a mom, I'm not sure how to stop marking time after birth as if she's not still here. It's just so unexpected to experience birth and then just stop counting. Just do nothing. Labor, deliver, hold baby, pass baby around to family. Stop. Nothing else. No first day and second day. Just the days of our grief. 7 days since she died. But not 7 days of her life. It's honestly a surreal feeling to just not count anything at all. You spend pregnancy itself counting weeks, waiting to reach certain milestone weeks as you reach the final due date and the culmination of all your waiting and counting. Then stop counting.

I know when I first brought up that Easter would be really difficult because I would not be able to buy the basket I didn't want to buy anyway, that it was mentioned that I could buy a basket for someone who couldn't provide one. And it was a great idea but sadly, I was too selfish to be that generous this year. I just can't do it. I can't buy something for someone else's kid when I can't buy one for my own. Not this year. Not yet. Instead of feeling benevolent, it just made me resentful. So I just didn't do it. Maybe I'll be granted a pass this year for my inability to see past my own pain to help others. I'm just not there.

Instead of real baskets, we looked at gravestones. I hope you never know what this feels like. I hope you never have to relate.