Saturday, October 29, 2016

My Favorite Resources

Since Pregnancy and Infant Loss Awareness Month is coming to an end, I thought I would share some of my favorite resources.  Culturally, we are terribly ill-equipped in this department.  I didn’t know of a s i n g l e thing after my first loss and nothing was ever recommended to me until much, much later.  Everything that I happened to find was from Googling.  Please pass these resources along to someone in need (I can almost guarantee that someone you know is experiencing or has experienced loss) or peruse these resources for yourself to become more educated and consider donating or getting involved.

I can’t say enough about Hope Mommies.  They have a blog, conduct Bible studies, yearly retreats, send out hope boxes, and offer lots and lots of support.

This is a local Austin organization that supplies comfort boxes.  I had the pleasure of meeting the founder and her sister last year at an Oct. 15th remembrance celebration in San Antonio.  She is absolutely wonderful.

This is just a good place to go for comfort.  They have a blog and a place where you can write a message to your baby.

This is a great question and answer site.

This is an online magazine with lots of good stuff.

This is a new favorite.  I love their mission of clothing bereaved mothers.  Please check them out!

Laurel Box provides beautiful customizable gift baskets for different occasions of loss.

‘Bringing Empty Arms Reprieve.’  They send you a free teddy bear.  I love this so much because being able to hold something close to my chest helped me.

You may have seen some of Dr. Jessica Zucker’s items advertised before.

10) Etsy
You could easily spend hours on Etsy.  Simply search for “miscarriage” or something along those lines.  One store you might find is this one.  You will also see me wearing this necklace more days than not.

Don’t watch this unless you are ready to cry.  I don’t care who you are…you will cry.

To be honest, I didn’t go out and buy books about grieving and loss.  I have heard of some fantastic ones but I didn’t want to recommend any that I hadn’t personally read.  This is the only one I have read.

This is a letter writing ministry that I wish I knew about back when our losses were still new.

The Church of the Holy Innocents is in New York City.  This what they have to say:
“Often children who have died before birth have no grave or headstone, and sometimes not even a name. At The Church of The Holy Innocents, we invite you to name your child(ren) and to have the opportunity to have your baby's name inscribed in our "BOOK OF LIFE". Here, a candle is always lit in their memory. All day long people stop to pray. On the first Monday of every month, our 12:15pm Mass is celebrated in honor of these children and for the comfort of their families.
You bet my kids’ names are included!

You’ll find lots including information about walks, balloon releases, and various remembrance activities in your area.

They send out comfort kits and are committed to educating the public.

They send out heart shaped pillows with the baby’s name embroidered.  They even personalize the weight of the pillow to the baby’s weight.  You bet I have 2 of these!
*Update: I just saw that they have had to close due to illnesses but their Facebook group will remain open.

A special site started by a social work therapist who spent years counseling people through loss and then experienced her own.

This is a Facebook Christian support group that I am apart of and love.

This is a neat site that even has a live chat available.

This site has a sweet little shop of memorial keepsakes.

This is a documentary that is currently in post-production.  It is seeking to “explore the culture of shame and silence surrounding miscarriage, stillbirth and infertility.”  I have high hopes for this.

Last but certainly not least is my newest discovery.  It’s another story of someone turning their pain into something so, so special.  She will paint your child’s name with watercolor and send it to you.  I’m currently waiting for mine to arrive!

Thursday, July 16, 2015

Heaven Born

The other night I had a break down.  My heart split open all over again.  My grief was so heavy, it felt like the source of my grief happened yesterday, not months ago.  In my attempts to be strong and return to normalcy I had bottled up everything for a while.  Not only did the top blow off, but the entire bottle exploded into a thousand pieces.  I wept big, fat, ugly tears until I couldn’t breathe, and then blew my nose and cried some more.  This went on for many hours all while screaming at God in my head.  As I finally began to calm down the screaming turned into bargaining… “Ok you can have them for most of the time, as long as you send them to visit every once in a while”… “What if you just let me see them in my dreams?”... “Just let me hold them one time…just once.”  

I’m still waiting for an answer to those requests. 

The past 9 months have been the hardest days of my life.  Living through these days has opened my eyes to an all too often hidden and lonely reality of millions.  I’ve developed an awareness of and a heart for those in the same and similar situations.  It is not wanted sympathy or attention that leads me to tell my story today, but a love and support for these hurting and lonely people.  If I can bring even the smallest sliver of community to those trudging through the day to day of this particular nightmare, it is worth the uncomfortableness and vulnerability I will experience. 

In writing this, I do not claim to speak for everyone in this situation.  I do feel though, that in my somewhat pitiful attempt to describe what this is like, I am probably speaking for many, if not most.  In my own journey to find healing, I have done a fair amount of reading.  Those that have bravely gone before me to deny certain aspects of our culture and share their pain, have written the most beautiful books, blogs, articles and testimonials.  Those that write comments and responses to these seem to share the same sentiments.  In reading their words, many of us in this community have seen the words written on our hearts.

We are a community of women who have experienced pregnancy loss. Our children were born into heaven.

Several months ago, I decided that I hated the term ‘miscarriage.’  I can hardly bear to say it and hearing it almost makes me sick to my stomach.  It’s probably because when you experience this type of loss the ‘M’ word gets thought, spoken, and read thousands of times and every time you think, speak, or read it, that ugly word reminds us of the ugliness of what’s happened.  I also don’t feel like the ‘M’ word acknowledges the loss of life as well as the term ‘pregnancy loss;’ and if there is one thing heaven born moms are adamant about, is that there has been a loss of life.  Of course there are so many other lovely phrasings one occasionally hears like “Spontaneous Abortion” (which will appear in my medical history for the rest of my life,) or “Terminated Pregnancy” (which I was thrilled to see as well.)  Those make me just as nauseous.  Please don’t use them.

Our culture doesn’t like to talk much about pregnancy loss and that is something I believe we need to change.  We are choosing to not talk about something that happens much more often than most people realize, even multiple times to the same woman.  A loss occurs in somewhere between 20-25% of all pregnancies no matter what.  And for some reason it has become ingrained in us as a society to brush this particular pain under the rug.  To address it publicly is taboo.  To admit to pregnancy loss is to admit to weakness or failure.

This is ridiculous to me because there are way too many of us out there right now who feel so incredibly alone, frightened, and horribly sad.  Because of the way our culture has traditionally chosen to handle the issue, we feel like we have no one to turn to or if we do try to confide, we fear that our tragedy will not be understood or acknowledged.  We feel like we don’t know anyone else who has gone through this, even though chances are we know several people who just decided to keep quiet about their suffering.  We resort to seeking comfort largely from the internet.  Sharing, being authentic, and finding support is much easier online than in the real world which is not conducive to our conversations. 

Though retreating to the internet for community is helpful for many of us, other avenues (like social media) can make things much worse.  For women in my generation, it seems like every time we turn around someone is announcing their pregnancy, or the arrival of a baby who got to live, or posting photos of their baby bumps…we try not to hate these women.  We are not always successful.  Of course we know that their good fortune and our bad luck is not their fault and they should not be expected to not post these things for the sake of our feelings, but it’s still really painful for us to see.  “Why does she get to have 2, 3, 4, 5 healthy babies and I...?”  

That first question is like a poison.  After we allow ourselves to think one 'why,' many others follow. If we are not careful we start drowning in the 'whys'.  "Why does the teenager who had sex one time get a healthy baby? Why does the addict get a healthy baby?  Why does someone who doesn't even want one get one?  Why do all the children of characters in TV shows, movies, and books live?  Why...why...?"  

These types of thoughts run rampant in our heads.  And we don't talk about it.

It’s often not better out in the real world.  We feel like we see way more pregnant women everywhere we go than we did before and we see the happiest looking families with the most beautiful kids, and…did the baby section at Target get bigger?  How am I supposed to avoid it now?  We also get angry and have to try and refrain from giving a lecture every time we hear some random parent complaining about their kid.  Don't they get how lucky they are?  

We try to remind ourselves that we occasionally take things for granted too...that we have things that other people might desperately want, but in the thickness of the negative thoughts in our heads, the positive ones sometimes don't get through.

If most of our friends are parents, we also probably feel pretty left out.  As much as we wish we could still relate to them and their conversations about diapers and daycare, we don't.  The center of their existence has shifted.  And we love our own mothers, but we have to accept to a new meaning for and a new perspective on Mother's Day. On that day, for self-preservation, we avoid church like the plague, not to forget the greeting card aisles at the grocery store and let's see...every dang commercial on TV.  And we don't talk about it.

It also doesn’t help that we get mail from our insurance companies trying to explain health benefits during the next nine months and a constant bombardment of emails from every pregnancy and family website under the sun, no matter how many times we click ‘unsubscribe.’  While the loss is still happening, we have to face a scary and sometimes risky surgery to remove the contents of our wombs or we endure a seriously painful and heartbreaking time of labor.   This is followed by several appointments and ultrasound after ultrasound to either check on the progress of our child being torn apart and flushed out of our bodies or to stare at an empty womb that not long ago held precious life.  We also have blood test after blood test to ensure that our hormones are returning to normal levels; all while probably still experiencing morning sickness (Yes, you still have morning sickness for a little while after you’ve have lost a baby.)  And we don’t talk about it. 

We hide the onesies, congratulations cards, and sonogram pictures away in a closet to protect ourselves from the constant threat of tears.  We hide in our houses to avoid running into someone and having to un-tell the good news or to avoid the looks of pity, or worse, the people who don’t even try to say anything.  If we did not announce the pregnancy, we feel an enormous pressure to act like everything is going great because we don't want to burden others.  This eats away at us.  It makes us feel horribly dishonest and like our behavior is not acknowledging or honoring the little life we lost.  We are tired of feeling every emotion under the sun, or tired of feeling numb, or tired of not feeling like ourselves, or tired of feeling like we should be over it by now, or tired of having to pretend that everything is ok.  And we still don’t talk about it.

Well I‘m going to talk about it. 

I want to take a step towards changing how we handle pregnancy loss and I hope that you will support and encourage women and families to choose to do the same.  Here is my personal story:

I learned that I was pregnant with E in mid-September of last year.  I think the first couple of days we were in shock and didn’t quite believe it.  After all, that second pink line was pretty faint.  But as the nausea and other symptoms emerged, reality set in and our excitement grew and grew.  We couldn’t wait for our first appointment when we’d get that first glimpse, which would happen at 8 weeks.  That appointment never arrived.

At about the 6 ½ week mark I went to the restroom at work and noticed a small amount of blood.  As soon as I saw it I felt like I had been punched in the gut.  I managed to talk myself down from outright panic though, because I'd read that some bleeding can be considered normal.  I didn’t call the doctor until the next morning when the same thing happened again.  I ran back to my classroom, locked the door and tried to hold it together while talking to the nurses at the triage desk.  They placed me on pelvic rest and told me to try not to worry about it.  

I did alright following their instructions; it was pretty easy not to worry too much when the bleeding was so light and would disappear for a day or two each time.  But by the next Tuesday, there was a lot more.  I called my doctor again and this time they told me to go to the emergency room.

After a long evening in the ER and lots and lots of tests, the doctors informed me that my poor baby was way too small (they even thought it could be a blighted ovum) and there was no heartbeat to be found.  They sent me home unable to officially confirm anything because they needed proof of ‘no growth’.  But I knew the truth…I knew in my heart that it was over. 

We spent the next couple of days learning to navigate the grieving process.  I had what was supposed to be my happy 8 week doctor’s appointment on that Friday, but it turned into a ‘let’s check on the abnormal baby appointment.’  During the ultrasound everything seemed to look the same, but was told that it was still too early to confirm 'no growth.'  I made an appointment to come back the next week, but later that afternoon I started cramping.  

It started off tolerable but got worse and worse over the next hour.  The pain eventually became so excruciating that Kyle carried me to the car and took me to the ER again.  I was given morphine while they evaluated my sonograms from that morning.  For some reason my HCG levels were still increasing, so the doctors refused to confirm what we knew to be true despite what was happening to me. As the pain finally seemed to be easing up they were getting ready to send me home, but then decided to go ahead and do a pelvic exam first.

This was when the doctor informed me that everything was currently being ‘evacuated’ (lovely term) and looked to still be in one piece…my poor dead baby was being born.  

He pulled her out, put her in a specimen cup to be sent off for testing and wouldn’t let me see.  I should have fought harder.  I wanted to see.

A few weeks later I accidentally deleted the only pictures we had taken while I was pregnant and I had already thrown away the positive pregnancy tests in my anger.  We also didn’t have any ultrasound pictures to remember her by because no one offers you pictures when your baby is dead.  We felt like the most precious thing in the world to us had just vanished without a trace. 

We were so devastated.

We found out that I was pregnant with T in early February.  I woke up at 3 am and couldn’t go back to sleep, so I decided to go ahead and take a test.  I ran to wake up Kyle and I just cried.  I was so happy.  I just knew that this was going to be our rainbow baby.

Over the next few weeks, I worried a lot but was hopeful that everything would be ok.  I was starting to feel more and more confident because I was supposed to be about 7.5 weeks and there had been no sign of blood.  But one Sunday evening I went to the restroom and there it was.  At first I felt like I had the wind knocked out of me and then I screamed and cried and hit my fists against the ground. 

We couldn’t sleep most of that night, anticipating what we would find out during our emergency appointment the next morning.  Fully expecting to get bad news, we actually saw and heard our baby’s heart beating.  It was probably the most amazing and relieving 3-4 seconds of my life.  We were also told that I was only 6 weeks along, not 7.5.  That concerned me a bit, but I just tried to trust the doctor when she said that everything looked good.

That little heartbeat changed everything for me.  I just knew that this one would live, that everything would go our way this time.  But about a week and a half later, everything changed. 

On Wednesday evening I found out that school was going to be cancelled the next day for bad weather so I turned off my alarm, took a Unisom, and planned to sleep in.  I woke up late Thursday morning feeling rested but with blood all over my legs.

I’m not sure how I made it through that day, especially without Kyle being home.  I felt almost catatonic.  I just remember laying on the couch staring at the ceiling.  Seconds felt like hours and hours felt like seconds.  I knew it was over.

When Kyle got home, I could barely speak to him.  He insisted on calling the doctor and they told us the same crap I knew they would tell us.  “Everything could be fine.  Try not to worry.”  I wanted to scream at them and throw the phone against the wall.  Why didn’t they listen to what I was telling them?

By some miracle I made it to work on Friday, but left a little early to go to another emergency appointment.  After waiting for what felt like an eternity, my doctor confirmed what I already knew.  There was no more heartbeat.  He had probably stopped growing only few days after my last visit. 

The last image of him I saw on that screen all curled up and lifeless is burned in my brain forever.  I see it every time I close my eyes.

Kyle’s mom arrived that night to help us.  But it was only a couple days until the labor pains started.  I tried to stay home and manage the pain with my medication as long as possible, but they were not giving me any relief at all…so late Sunday night we went back to the hospital.

As soon as I was put in a room I was stripped of all of my clothes in front of 4 or 5 strangers while doubled over screaming in pain.  I remember that night in flashes.  Poking, prodding, machines beeping, tubes and cords, morphine, and ultrasounds..."baby has detached"...holding onto the bed rails for dear life...walking to the restroom...a trail of blood and tears followed me everywhere I went.  

I was still cramping some when they sent us home in the middle of the night.  And as I was going to the restroom before bed, T was born…into the toilet.

I remember standing there looking into the toilet knowing that he was there and for some reason (maybe I was too tired or drugged up to fully realize what I was doing) I flushed it.

Looking back, that single moment was the worst moment of my entire life.  I regret nothing more than that.  I should have pulled him out.  I should have held him.  I should have taken his little body and buried him.  Something, anything more dignified than a burial in the sewers.  He was our flesh and blood.  I am horrified every day to have done that to him.

Months later I am still grieving.  Some days I am stronger than others but I feel like I have a long road to travel still.  I, to this day, still do not know how I was able to go back to work after this.  But if God hadn’t given me the strength, I might still be laying on the couch staring at the ceiling; the seconds feeling like hours and the hours feeling like seconds.  

My supply of hope for future children is very low.  My desire to try again is hugely crippled by fear.  My supply of anger is overflowing.  My supply of sadness has exponentially multiplied.  My supply of loneliness for my kids is crushing.

Two big pieces of my heart are now in heaven.  Because of this, heaven has never been more appealing to me.  I can’t wait until the day I will finally be with them again.

Because I want people to be better educated on pregnancy loss, I have made a list of 'Do’s' and 'Don’ts' for when someone you love is going through it.  Knowing what to do or say when someone is grieving is hard, I’ve never known what to do myself.  But what I’ve learned through this is just that we so appreciate it when you try.  Hopefully your words are the right thing to say, but it’s ok if they’re not, we understand.

Again, my ‘Do’s’ and ‘Don’ts’ may not apply to everyone in this situation and I have definitely not thought of everything.  Nor has everything on the ‘Don’t’ list happened to me personally, though a couple have.  In fact, many of the wonderful people in my life have given me the ideas for the ‘Do’s’ through their actions.  I am eternally grateful to those people.

1.     Don’t: Let it go very long without them hearing from you.

Pregnancy loss, like all grief, is desperately lonely.  Please do not just assume that they need space…they may not want to talk to you on the phone or be up for a visit, but they do need a text…an email…a voicemail…something.  Keep them coming! And don’t forget about your friend weeks and even months after the initial loss, they will still be hurting, I promise.

2.     Don’t: Say, “If you just relax, it will happen.”

I’ve heard this statement used when people are struggling to get pregnant (not even sure if it’s true in that instance), but the same principle does not apply to pregnancy loss.  Even high levels of stress have not been proven to affect a growing baby.  Please don’t tell people this, it makes us feel like the loss was our fault (which we already fear enough.)

3.     Don’t: Assume that something is wrong with them.

I’ve been told that typically doctors will not do serious testing on a couple under the age of 35 until they’ve lost 3 babies in a row.  So 2 losses and 1 surviving child and then another loss doesn’t count.  And half or more of the women who are tested after 3 losses in a row, end up with inconclusive results, meaning they can’t find anything specifically or obviously wrong.  Imagine the low percentage of women who experience 3 losses in a row and then only half of that group being able to get answers.  Chances are very small that something is wrong with them.

4.     Don’t: Say “At least it happened early on.”

Why have we decided that the less amount of time a baby has the lived, the less human they are?  If my babies had lived another 2, 10, or 30 weeks there would still be a baby that died.  The ‘rule’ of not sharing the news until you are 12 weeks along only contributes to this notion and contributes to the problem of not talking about pregnancy loss.  Of course everyone has the right to choose when they announce their pregnancy, but I personally believe that it should be based on when you feel comfortable doing so, not when your doctor says to.  Maybe those two dates align, maybe not.  Every baby deserves to be acknowledged and celebrated no matter how young.  And when necessary, every baby deserves to be grieved.

5.     Don’t: Say “Just keep trying.”

We may very well get pregnant again and go on to have a hoard of children, but those children will never replace the ones we’ve lost.  We may decide to not try again because the fear of another loss is too great.  We will always have babies with Jesus.  “Just keep trying” to me implies that we just want to have a child. When in fact, what we want is the children we already have.

6.     Do: Pray for them

No human is equipped to do this alone.  We may not be able to form the words ourselves or we might be too angry at God to try.  Pray for them that they get the time they need to grieve.  Pray that they would be given the strength to continue. Pray that the hate and anger that clouds their thoughts would be replaced by hope and peace.  And pray that they receive the clarity of mind to know what to do moving forward.

7.     Do: Acknowledge the loss of life.

Whether the baby lived 1 week or 40, someone has died…someone that was created by God.  Try to remember too that pregnancy loss is often also the loss of hope and dreams. Not only do we mourn the life lost, but we also mourn what could have been.

8.     Do: Support them in their attempts to memorialize and celebrate their child.

If they want to hold a funeral, go!  If they want to spend their money on something extravagant, let them!  If they don’t feel the need to do anything physical and only want to remember their baby in their heart, remember their baby in your heart too.  After E, I felt the urge to memorialize her every way possible.  That urge got stronger after T.  We named them, we planted a tree (my dog then ate it, but that’s another story), I got some jewelry, and am having pillows made with their names.  On E’s due date we celebrated and remembered her as a family.  I’m sure we will do the same thing in October.

9.     Do: Understand if they are different from now on.

I don’t think you can go through the horrors of pregnancy loss and come out the same on the other side.  The things you see, the fear, the stress, the physical pain, and the ways you are examined and poked and prodded over and over…it’s all very real.  Developing PTSD, depression, or anxiety afterwards is very common.

10. Do: Understand if they do not want to talk about it.

I could talk about it a little bit after the first, but I haven’t spoken about the second until today.  I’ve kept so much on a need-to-know basis, it’s just easier.  If I, or someone you love experiencing pregnancy loss, has hurt your feelings by not communicating, we are sorry.  Words just never feel like enough to express what we feel, and sometimes opening our mouths releases the floodgates, so we choose to shut down and not talk about the hard stuff. 

600,000 U.S. women experience pregnancy loss each year.
1 in every 50 U.S. couples trying to have children experience multiple losses.
As many as 120,000 U.S. couples suffer their third consecutive loss each year.

If you have or are experiencing pregnancy loss and need someone to talk to, please get in touch with me or someone you would feel comfortable talking with.  It doesn’t matter whether I know you or not, I would love to support you on this journey.  You do not deserve to feel as lonely as you feel.  You do not deserve to have to suffer silently. 

I encourage women everywhere to share their stories.  Let’s bring awareness to our culture and end this silent suffering once and for all. 

What Makes a Mother

I thought of you and closed my eyes
And prayed to God today.
I asked what makes a Mother
And I know I heard him say.
A Mother has a baby
This we know is true.

But God, can you be a Mother
When your baby's not with you?
Yes, you can, He replied
With confidence in His voice
I give many women babies
When they leave is not their choice.
Some I send for a lifetime
And others for a day.
And some I send to feel your womb
But there's no need to stay

I just don't understand this, God
I want my baby here
He took a breath and cleared His throat
And then I saw a tear.
I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say:
"We go to earth to learn our lessons
Of love and life and fear.

My Mommy loved me oh so much
I got to come straight here.
I feel so lucky to have a Mom
Who had so much love for me
I learned my lesson very quickly
My Mommy set me free.
I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep
On her pillow's where I lay.
I stroke her hair and kiss her cheek
And whisper in her ear.
"Mommy don't be sad today
I'm your baby and I'm here."

So you see my dear sweet one
Your children are ok
Your babies are here in My home
And this is where they'll stay.
They'll wait for you with Me
Until your lesson is through.
And on the day that you come home
They'll be at the gates for you.

So now you see what makes a Mother
It's the feeling in your heart.
It's the love you had so much of
Right from the very start.
Though some on earth may not realize
You are a Mother until their time is done.
They'll be up here with Me one day
And you know you're the best one!