PLEASE ask me about my child.

Last night I posted a link to an article written by a bereaved mother who also lost a baby to stillbirth.  I could have written that article.  Don't get me wrong, she did a beautiful job, but that article could just as easily have my name on the byline.  Everything she described is exactly what I have felt and experienced and what I CONTINUE to feel and experience, with one exception.  She has another living child, and we don't.  We continue to try for this.  I was so hopeful that this month would be the month.  So hopeful, in fact, that after work I went directly to the Dollar Store yesterday for pregnancy tests (hey, you can't beat a dollar for a test!) and I braved the hoards of low-income families with gaggles of children.  Was it easy?  No.  What got me through it?  The real hope that this was THE month!  So, I got home and went directly to the potty to test.  I sat on the toilet and watched the test...   Nothing.  So, I wiped, only to find the wad of tissue covered in blood.  HOW?  WHY?  I am only supposed to start my cycle on Tuesday, that was still four days away!  There I was sitting on the toilet...the same toilet where my water broke and this whole nightmare started.  There I was, sitting and hopefully testing, only to have my body laughing maniacally back at me and leaking red through it all.  I was so angry.  So angry that I didn't even know I had started my period.  So angry that I didn't even know Norah had died inside me fifteen months ago.  So angry that I took that test and was so excited that I didn't even bother to WIPE first, but if I HAD bothered to wipe first I would have realized just as quickly that I'm not pregnant, AGAIN, and I wouldn't have wasted a DOLLAR in the process.  It is torture, all of it.  Every last bit of this is torture and I keep trying to believe that God has everything worked out and that this is all leading to something amazing, but I am really starting to think that my "something amazing" isn't going to come during any part of this life.

So, yes, the article I posted.  Here is that link:

http://parenting.blogs.nytimes.com/2013/02/10/breaking-the-silence-of-stillbirth/

One of my friends shared this article to her wall and it got a few responses... mostly less than favorable responses.  I am so tired of everyones' excuses.  I am so tired of people thinking stillbirth is uncommon. IT IS NOT!  I refuse to sit idly by and let that misconception work its way into anyone else's brain.  I refuse to be silent about this.  I will find SOME WAY to make an impact for Norah and for all the other babies who have never known this world and for all the families who live this nightmare day in and day out.  I read the responses to my friend's shared post and I flew downstairs to my laptop to craft a response.  This is what I came up with:

This was the first comment under the article my friend shared (I've changed the names of the respondents): 

Mark:  yeeeaaaaahhhhh.....the problem is that it's not easy to make conversation about dead children.

Wonderful Friend of Mine:  That's what this is all about. Making it easier.

Mark:  Many years ago, we had a friend, google her name by all means, it's (name removed). She was our local bar maid that served us lunch every day. One Monday we went in, the landlady came out and sat with us to say that (the girl) had gone missing and her mother would be off work.

A few years later, I met the girl's mother in the high street. She had lost her daughter, her husband and her had parted, she had had to move houses - what the heck do you say? The weather is always a good conversation.

Wonderful Friend of Mine: I like this part of the post: "Can we find a way to talk about stillbirth – to educate – without being fear mongers? I actually like to talk about Genevieve, about my pregnancy with her and how our family memorializes her, and most of the parents I’ve met in my situation want to talk about their babies. But we don’t want to scare everyone away. So maybe the next time you meet one of us, you could ask whether we want to talk about our children. If we do, you might ask how we chose a name, whether we had a memorial service, and how we honor our children in our daily lives. If those conversations inspire even a little more research and awareness, then maybe people will see that our lost babies aren’t just a horror story. They’re part of a love story, too."

Mark:  it's a difficult conversation to have with anyone though. i'm the master of tact (not), I can ask the guy with no arms what it's like, I can ask the guy with no legs where he lost them, but even I can't broach the subject of a dead child!

the other side of this is privacy. I am aware that I am at least one uncle/aunt short for instance, but it would be incredibly tactless to ask my grandmother about it. in fact, it's such a taboo subject, not even my father would ask, and it was 60 years ago.

it really is a very uneasy conversation to have with someone.

Carol:  I agree. I think many of us who are old enough, have family members who are still from the time that it was very common to loose young children. Both my moms and dads side, they lost a baby sibling. Both families never spoke about it. My maternal grandmother never wanted to talk about it. My dad didnt even find out about his sister that died as an infant until after his mother passed away at the age of 98..i think the problem isn't that people don't want to talk to people who have lost a baby. I think its more to do with the fear of possibly intruding into an area of great grief and sorrow..

Amy Elizabeth Mark, I agree, it is not easy to start a conversation about a dead child. Conversely, it is not "easy" for parents to go on living after their child dies. But by simply avoiding the issue because it isn't easy to speak of, you are protecting no one but yourself. Parents who lose a child, living or in utero, experience similar grief. What they need most is to talk about their child and the loss. That is why people go to therapy. Therapy is not a magical fix, it is a way to manage grief. Talking about the loss is the ONLY way to heal. We deny bereaved parents the opportunity to heal by denying them the opportunity to speak about their child. My husband and I lost our only child. Norah was stillborn at 38 weeks, 5 days on December 12, 2011. We were three days away from a scheduled delivery by c section. No one was ever able to find a reason for her death. There was no reason. She was seemingly healthy, and perfect in every way from her high cheekbones, to her delicate lips, to her perfect fingers and toes, to the soft brown hair on her head, to her beautiful eyes that we saw only by lifting her lids, which were angelically shut to this world. We had a baby shower for her in October. We had everything we needed for her: dressers full of clothes, a closet full of bedding, dozens of diapers, baby monitors, baby laundry detergent, a baby swing, a pack and play, books to read to her, toys, a stroller, a car seat, a snow suit, blankets, burp cloths, pacifiers, a humidifier, a rocking chair, a crib. We had EVERYTHING we would need for her when we brought her home. Except, she never came home in living form. Her cremated remains are with us and we have the many keepsakes provided by the hospital, friends, and family. To deny her existence by not speaking of her is worse than pretending she never existed. She was beautiful and perfect. She weighed 7 pounds, 12 ounces, and was 21 inches long. We had a viewing and funeral service for her, which hundreds of family and friends attended. We have started a book drive in her honor. She has left an indelible mark on our hearts and on the hearts of so many others, many who never even saw her or know us.

Amy Elizabeth Carol, you said, "I think many of us who are old enough, have family members who are still *from the time that it was very common to loose young children.*" WE ARE STILL LIVING IN A TIME WHEN IT IS COMMON TO LOSE YOUNG CHILDREN AND BABIES. 26,000 babies are stillborn each year, in the United States alone! Three million babies are stillborn worldwide each year! Stillbirth is all TOO common. One in every 160 births is a stillbirth! Do you know 160 women? If you do, then you know someone who has suffered a stillbirth! This is a silent epidemic. Because there is a huge stigma attached to infant death, no one talks about it. That is why so many people think it doesn't happen. I didn't realize stillbirth still existed. When the doctors told us Norah's heart had stopped beating and they first used the word "stillbirth" I couldn't believe what I was hearing. I assumed stillbirth happened only in colonial times and that it did not occur today. That is simply a misconception that is perpetuated by the silence bereaved families are thrown into when they lose a baby. You are exactly correct when you say, "i think the problem isn't that people don't want to talk to people who have lost a baby. I think its more to do with the fear of possibly intruding into an area of great grief and sorrow." It IS an area of great grief and sorrow, but grief and sorrow are as much a part of life as joy and happiness!  Why do we deny the perfectly human emotions of sorrow and grief? WE MUST ACKNOWLEDGE loss and allow the bereaved to talk about their loss. What bereaved parents want MORE THAN ANYTHING is to talk about their children. You are not intruding when you ask about their child. You are validating that child's existence and importance in this world. You are validating that parent's grief and showing compassion to a person who so desperately needs to be heard.

Amy Elizabeth How do you begin a conversation about someone's dead baby? You do it with love and compassion. If you do not possess those attributes, then you do not. It is that simple. If you care enough to validate a bereaved parent's sorrow and honor their child's life, then you simply start a conversation by asking simple questions like these: "What was your baby's name?" Bereaved parents LOVE to say their baby's name and they LOVE to hear others say their baby's name. You ask the parents, "How did you pick "Norah's" name?" "Did you have a memorial service or funeral for Norah?" "If it is something you'd like to talk about, would you mind telling me about Norah's funeral?" "Did you have a baby shower for Norah?" "If it is something you'd like to talk about, would you mind telling me about Norah's baby shower?" "Are there songs that you sang to Norah?" "Are there songs that remind you of her?" "Are there things you do in Norah's memory?" "Would you mind talking about the things that you do to honor Norah?" Do you see a pattern here? Use the baby's name...use it A LOT! And, begin each question with "If it is something you'd like to talk about, would you mind telling me about...?" In this way you give the parent the option not to speak about something they are uncomfortable sharing, and you send a message that you are sensitive to their privacy and their stage of grief. Talking about a dead child is not difficult if you care enough to give someone the opportunity to do it. I hear all too often that people are afraid of upsetting bereaved parents by talking about their child. The simple fact is that you upset us more when you DON'T talk about our children. It is crazy to me that people really think that by bringing up Norah they will somehow be upsetting me or that if I'm having a "good day" they will somehow ruin that. The simple truth is, no day is ever really a "good day" after your child dies. We never forget that our child is dead, so bringing up our child is not going to make us think, "Oh man, I had forgotten that my child died and I was having such a good day and now I've got to talk about this again." That is simply NOT how it works. All bereaved parents EVER think about is their lost children. Being offered the opportunity to speak about what is already constantly running through our minds gives us a much needed break and brings solace to our souls. Please, if you know someone whose child has died, ASK them about their child. And, if it is difficult, then just TELL them it's difficult. Tell them, "I know you lost "Norah" and that you miss her terribly. I have struggled with wanting to talk to you, by not knowing how to do it. Would it be alright if I asked you about her and we talked about her for a little bit?" Again, broaching the subject in this way acknowledges that you think of that person's child, it shows sensitivity, and it still gives the parent the opportunity to decline the conversation, but, most importantly, it shows that YOU CARED ENOUGH TO ASK. I can bet that parent will take you up on the offer and that they will never, ever forget it.

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I wanted to save this conversation because I think I make some good points, and I would really like to start writing to advocate for stillbirth awareness and, ultimately, speak at seminars or other events.  Anyone who knows me knows that if I feel strongly about something or if I have a passion for something, I make it known.  I have never been so passionate or felt so strongly about a cause.  If I and the hundreds of thousands of bereaved parents out there have any say in it, STILLBIRTH WILL NOT KEEP HAPPENING.  WE WILL BREAK THE SILENCE.  

Always loving you, sweet girl.  We miss you so.  

Love, Mommy  

Time Marches On

Each new month is really hard.  Each new month adds more distance between the time I held you and the hell that has become my now.  It is no longer a surprise when I am more weepy than usual when each month comes to a close.  Before it would only dawn on me about midway through the day why I felt worse than usual.  Now, I just know.  Now, I just expect it.  The turn of this month has, however, been exponentially more difficult.  While most people are celebrating the "end" to winter and looking forward to warmer, more pleasant days, I am saddened that this will be the second summer spent without you.  I remember last year on the last day of school, I walked out the doors and just cried.  The tears welled in my eyes the closer I got to leaving.  I'm normally ecstatic on the last day of school, but I knew it would be the first summer spent without you.  All our plans for you - my expectation of getting to spend every day of the whole summer watching you grow, teaching you things, loving you up, and having so much fun with you was all gone.  As I walked through those doors, the tears flowed.  Will it ever get easier, baby girl?

So, March is here, and it has brought with it two new babies - both on the same day.  As if it isn't hard enough seeing many friends fall pregnant and have babies, March decided to hit us doubly hard.  I'm so done with Facebook.  Seriously, it should be called "Babybook" or "Gestationalbook" or "Hey-look-at-us-we're-pregnant-and-our-baby-didn't-die-like-yours-did-book."  It's torture.  If the Facebook page for Norah's Library wasn't attached to my Facebook, I'd just delete it.  I thought I had all the settings finagled just right so that I wouldn't see anything about all these new babies, but this morning Facebook was nice enough to let me know that a friend had posted something on another friend's wall, and that's when I saw it - the "Congratulations on the baby, and tell mom happy birthday too!" post.  Seriously, as if some peoples' lives aren't charmed enough, they also get to give birth to their living child on their BIRTHDAY?

Oh, and that's not all, folks.  No, the Universe decided that wasn't enough for us for one day.  So, it decided to bring our other friend's child into the world ON-THE-SAME-DAY.  Yes, we got a "two-for" deal this March.  It's just awful.  I'm already dealing with the requisite "new-month-blues" and now this.  Kevin is having a hard time too, I know.  He told me he had a bad dream last night in which he was really jealous about the one friend's new baby.  That's totally normal, but he feels really bad about it.  Honestly, this is just normal.  Anyone who wants to judge us for not being overjoyed for these people just doesn't understand.  This is hell.  That is all there is to it.  We are living in a nightmare.

Honestly, I can't take it anymore.  I can't take it.  I'm jealous, I'm angry, I'm bitter, I'm sad, I miss Norah like crazy every minute of every day,  I hate that it seems like everyone is having babies and everyone else's babies live, but ours didn't and it is all just NOT FAIR and I just want to throw a tantrum about it and I'm sick of everyone telling me to try to be positive because, really, did your baby die inside you and did you have to give birth to your dead child then attend her funeral five days later on the day your milk came in and it hurt every time someone hugged you to say how sorry they were yet here I sit just over a year later and can count on ONE HAND the people who still ask about her or who let me vent during moments like this? I am tired, and I'm sorry that I can't get far enough outside of myself and my grief to feel joy for these people. I cannot.  And I'm talking about the people who ask about her and mention her in REAL LIFE.  Don't get me wrong, I appreciate all the kind words and everything on Facebook, but it just doesn't replace having an actual conversation with a living, breathing human being, who really cares - not necessarily understands - but who cares enough to just let me vent and not try to get me to see things from another perspective.  Because, honestly, that's all people have been telling me lately.  I have people telling me things like, "Try to be positive about new life and surround yourself by it" - It may help you to move forward (i.e. conceive, get pregnant...because apparently no one wants to say those words to me either). I just can't do it. Every person I talk to says, in some form or another, "Look at things differently, try to see things from another perspective." I can't do that when my perspective is so permanent and blinding. Society sucks at dealing with death and it sucks even more at dealing with infant death.  So many people are telling me "not to put so much thinking" into having another baby. It is almost daily. That's not good advice for ANYONE who really wants a baby, and it's HORRIBLE advice for someone who has lost a baby. I'm so tired of this.

People say the most awful things with the best of intentions because they have not experienced this so they just don't know. I'm just tired of making concessions for peoples' ignorance! The woman who runs our support group says we just need to understand that people mean well and don't know what to say. Honestly, I AM THE ONE HURTING, why should I be making allowances for THEM!? People don't know what to say because we just keep allowing them to say stupid things!!! I am about to start being the change I want to see and start telling people when they say or do something hurtful. No one's ever going to figure it out if we just keep lying like dogs and taking it.  I wish people would just understand that this is NEVER going to go away. I'm NEVER going to be "cured" of this. A new baby will certainly help, but we'll always miss Norah. We'll never be the same. SO many people ask, "Are you still seeing your therapist?" I HATE THAT QUESTION!! Some people have even suggested we try to find a new therapist - presumably because I'm not "better" yet?  We really like our therapist. She does a good job, and it's not her job to CURE me, because this isn't something that can be cured; she can't bring back Norah, and she can't take away the pain of losing her.  She listens, and she tries to give us ways to deal with it.  That's all she can do.  That's all anyone can do.  People just hate to be around suffering and pain.  It's so lonely and isolating.  Not only do I miss you, Norah, but I also feel lonely because there are so few people who actually take the time to sit down and ask me how I am - I mean really ask how I am and care to hear the truth, because it isn't pretty.

I have friends who are newly pregnant, and everyone is showering them with congratulations, and "when the baby gets here..." statements. It is all lost on me. I don't understand any of that. Our society acts as if pregnancy is a guarantee of a living baby, and quite often that simply is just not true - it's just that no one really talks about all the losses that occur because it's too uncomfortable to think about for people who haven't experienced it. Well, it's our daily life, and I think people shouldn't have the option of ignoring it; we certainly can't.  

I don't know how I'll want people to handle our next pregnancy.  Sometimes we think that we won't be telling people about it until we absolutely have to.  It will just make things less complicated.  No one knows what to say or how to act now, and I'm guessing that's not just going to magically go away when we get pregnant again.  On the other hand, sometimes I feel like maybe we should tell people.  Who cares if it makes other people uncomfortable.  We didn't want this life, but we have no choice but to live it, so why should we try to make it easier for other people?  We're not going to know how to handle it until it actually happens.  Either way, I wish it would just hurry up and happen already!  This month it will be nine months since we started trying again for another baby.  NINE MONTHS.  We did get pregnant in August, but I had a very early miscarriage.  That was hard, but it's nothing like losing a baby full term.  It just isn't.  I've had blood tests to check my thyroid, an ultra sound to check my uterus, monthly blood draws to check my progesterone levels, a hysterosalpingogram to make sure there are no blockages in my tubes, and everything is normal.  The next step is to get Kevin's count tested.  Stress can definitely lower a man's sperm count, and we are both definitely under stress.  It's all just the worst.   We miss our baby like crazy, we want to have another baby, but we can't because we're stressed because we miss her like crazy.  I am telling you, it is HELL.  

So, am I happy for all these people bringing new life into the world?  Am I happy that they get to go home and do whatever it is new parents do with a new baby - because we don't know what that is, even though I gave birth to a full term, beautiful baby girl?  Am I happy that all my friends get to be part of the first-time parents club but we'll never be a part of it, because our first child died?  Am I happy that they get to snuggle with their baby, look into its eyes and feel the completion of that bond that was started in utero, that bond that was ripped from us when she died?  Am I happy that they get to go places to show off their baby, but we can't go any of those places because it throws me into horrible anxiety?  Am I happy that they get to stay up all night with their babies and have a good reason for being tired the next day, while I come to work tired from crying, tossing and turning, and having bad dreams?  I could go on, but I think I'm painting a clear picture...I won't say, "I could go on, but you get the picture," because unless this has happened to you, you don't get it.  You never will.  

So, here we are.  Another month, another breakdown.  It's become the natural cycle of my life, it seems.    Just something to be expected.  So often I wonder what it's like to live without grief.  I try to remember my life before it, but it was so long ago that I can't really get a good grasp on it.  This year will be ten years since my dad killed himself.  December 15, 2003.  I definitely haven't lived without grief since then.  My grandma died the summer between my junior and senior year of high school.  I loved her so much.  She was one of the only people who really listened to me when my parents were being unreasonable.  She never judged, she never told.  She just listened.  I loved her so much.  I struggled a lot when she died.  That was August of 1998.  So, there were about 17 years of my life where I didn't struggle with grief.  I often wonder, why me?  Why do I have to go through this when so many other people skim through life with what I would deem surface stressors.  I know no one's life is a walk in the park, but let's be real.  How many people do you know whose father shot his head clean off his body with a shotgun and whose full term baby died less than 24 hours before she was born?  Yes, that's graphic and probably hard for most to read.  Now imagine that it's your life.  It's your daily existence.  It is too much.  The Bible says "blessed are those who mourn...blessed are the broken in spirit."  I am so very blessed.  So very, very blessed.