Monday, June 30, 2014

The Discouraged Place

You will find no resolutions here.

No pretty explanations or metaphors tied with florid descriptions.  

No revelations.

And no answers.

For months I have been in the sad place.  Dealing with the compounded grief of 3 sequential losses of my 3 babies.  Sad, angry, grieved, and quite honestly, still trying to get out of bed some days.  

But over the last couple of weeks, I feel like my sad place has transformed into more of.  well.  of a discouraged place.  The grief is still there, but it is overshadowed by the looming presence of the absence of hope.  If that makes any sense at all. 

It's a deep pervading sense that this season, this season of loss, struggle, and deferred dreams seems to be dragging on and on and on.  And that despite the crystal ball that some people must be hiding in their back pockets, assuring me that everything will work out perfectly in the end, there is no end in sight.  

And that as I sat in the doctor's office last week, trying to make it the first visit that my doctor didn't have to hand me a kleenex to dry my eyes (and failing miserably), and I listened to her explain that we needed to move on to the next step because the prior plan wasn't working and my body had evidently become immune to the drugs--I remember sitting there thinking...this is no longer just a baby loss journey.  It's no longer about the fear of losing another one.  Of getting the BFP and panicking that a 4th loss was in store.  It's the fear that I  may never even get the chance to fear that again.  What was a struggle to keep a baby has now become a struggle to even just conceive a baby.  

What the heck.

Call it a step back, a slap in the face, a kick in the butt, a punch to the stomach, a wrench in the it whatever you want.  It's downright discouraging.  And I feel.  so.  hopeless.  

And for the last couple of weeks, that's where I've been camped out.  The discouraged place.  And like the grief place, it's a lonely place.  Isolating, cold, and full of a lot of darkness.  

And as I consider the stories that have come across the desk of FMN over the last couple of weeks, the feelings of despair only compound.

First, there was the woman who was told at 20 weeks that her baby boy had a terminal disease.  She and her husband made the courageous choice to carry him for as long as they could, and the next week he died in utero.  Did I mention that her husband is also battling terminal cancer?

Then there was the momma from Texas who emailed us to ask for a box.  For herself.  She had just lost a baby girl at 14 weeks due to cystic hygroma.  4 years before that, she gave birth to a stillborn son at 24 weeks.  And a year before that, she miscarried another at 8 weeks.  Last we heard, she was planning the funeral for her little girl.

There was also the momma who was told that her baby boy had a terminal type of dwarfism and would not survive birth.  He was born into heaven last week.  

And finally the woman whose baby boy was also just diagnosed with cystic hygroma at 18 weeks gestation.  He is alive but not expected to live much longer.  

And as I sat tonight.  And I read more in detail about some of these women and their stories, I wept.  I wept for the dark days they face, the isolation they will experience, and the despair that they will feel.  I wept that they would be leaving the hospital with empty arms.  I wept for the children who were excited to have a new baby brother or baby sister.  I wept for the husbands who will work so diligently to hold their families together that they will deny their own grief and begin to crumble under the weight as the dark days keep coming.  

And I wept for myself.  For my babies that I will never get to hold on this side of heaven.  For the dream that feels a little more crushed every day.  For the stab that I feel with every announcement, shower, meal delivery, and milestone that belongs to someone else.  

And I wept for the fact that I feel as though I have been drafted to head the saddest, most devastating committee on the planet.  

Afterall.  I did not ask for this.

And as Karen and I were talking tonight, I said, it's too much.  This is too much.  Because here's the thing.  

It will never not be this way.

There will always be momma's without babies.  And momma's whose babies die.  

And that is terrible.  It's devastating.  And it kind of makes me want to crawl into a hole, put my fingers in my ears, and hum as loud as I can to drown out the noise of this tragedy.  

And these stories literally represent one week of FMN emails.  One week.  There are many many many others just like these with equally as heart-wrenching outcomes that we have heard over this past year.

Well.  Thank God for Karen.  I don't know that I have much to offer her, but she always shows up in those moments when I need her, as she did tonight when she reminded me that yes, it will always be like this.  These stories will continue to happen.  The tragedy is not going to end.  But. 

These women could grieve alone.  Or.  We could come alongside them.

"Blessed are those who mourn for they shall be comforted."  Matthew 5:4

And so.  Each will receive a box or a package from Forget-Me-Not.  And it will not erase their pain.  It will not make these days any easier.  And it will not really fix anything.  But.  It might let them know that they aren't alone.   

There are days like these where I feel like giving up.  Where the burden is too heavy and the path is too dark.  And for today, I won't.  I won't because Karen is right.  And these women need us.  And we need them.  And because quite frankly, as much as this ministry was designed to minister to other hurting mothers out there, it has proven to be a very necessary lifeline for me as well.  

Like I said.  No resolutions here tonight.  Just a bit of jumbled thoughts and perhaps a deeper glimpse into the heart of a girl, a mother, who is hurting and wondering what will come next.  But until then, I leave you with this.

There is another reason why I'm not going to quit today.  Why I'm going to fight again tomorrow.  Because I thought to myself, if Eisley can do it for another day, I can do it.  

See, Eisley is Karen's 8 year old daughter.  And a couple of months ago, Eisley came to her mom and said that she wanted to help with Forget Me Not.  And she had an idea.  That maybe she could do something to help the other kids out there.  The kids who were excited to have a baby brother or sister, only to be told that there was no baby coming home from the hospital.  See, Eisley remembers how that feels.  She remembers how that feels because she felt that disappointment not one time, not two times, not three times, but four times.  Four times, she learned that the new baby was not coming home as they planned.  And so she, together with her twin brother Jake, decided to write a note to those kids.  Telling them that they know how hard it is and how sad it feels.  And they suggested that maybe we could give those cards to the kids that we hear about in Forget Me Not who learn that their baby brother or sister has died and won't be coming home after all.  

In one short week, we will release the details of our new branch to the FMN ministry-- Snuggles for Siblings.  Eisley and Jake have been hard at work and we will be sharing what they have come up with and how we will begin using it to reach out to the hurting siblings out there who are grieving the loss of their baby brother or sister.  

And so tonight, I guess I say this.  Eisley and Jake, I am so proud of you.  You display more courage, strength and kindness than most of us adults.  On days like today, where I feel like giving up, I am inspired and encouraged by you.  And I am so glad that we have you to help us out because I know there are a lot of kids out there who need to know that they aren't alone and that someone cares about them.  Keep up the good work.  Welcome to the Forget Me Not team--I know that I will learn a lot from both of you. 

Wednesday, June 25, 2014

Stillborn, but Born Still

I heard a phrase once that stuck with me so much. "She was stillborn, but she was still born."

What an incredible reminder.

Lily was stillborn. Born still. Born sleeping. But she was born. I have had the opportunity and blessing to give birth to three other children besides Lily, and trust me when I say, Lily was born. Perhaps the most heartbreaking part of having a stillborn baby is that their birth is forever overshadowed by their death. As mothers, we crave to tell the stories of our baby's arrival. We yearn to share the details of each contraction, each incredible moment, each tiny finger and each tiny toe. But when our babies die before they have had the chance to be born, we are forever robbed of the opportunity to tell our birth story, because no one wants to hear it.

I remember talking to someone once about epidurals. I mentioned that I did not get a good one when I had my twins, but I had an excellent one with Lily. The look on this person's face, the shock that I had mentioned one detail of my birth story with Lily, they thought I was insane. I could read it all over their face. What had previously been an easy going, light-hearted conversation about having babies halted immediately at the very mention of my stillbirth.

Here is what I would like the rest of the world to know: Yes, it was a stillbirth. But it was still a birth.

Yes, Lily died. But Lily was also born. I went through what all mothers go through when they give birth to their babies. I felt each contraction and savored each measly ice chip. I endured forced contractions for hours and hours because I wanted to feel every single ounce of pain this birth brought me, because it helped distract me from the pain they do not have any drugs to numb. I had amazing nurses and an amazing husband who coached me through the hardest day of my entire life. I allowed those amazing nurses and that amazing husband to encourage me into getting an epidural so I could sleep after twenty hours of labor. I sat on the end of my bed and sobbed while the anesthesiologist told me it would only hurt for a second, because I knew that wasn't true. I finally slept, until I was awoken by Lily, who had already died but still needed to be born. And I pushed that tiny little girl into this world, and listened as the only cries we heard were my own. I watched the nurses wrap her in a blanket she was far too small for, and smiled when they told me she was perfect. I felt like a new mommy when they had to teach me how to hold a baby so small, and my husband and I marveled over the daughter I had just given birth to.

There is a movie called "Return To Zero" in which the father of a stillborn baby boy mentions the irony of how his son's tombstone would have his date of death before his date of birth. Who has ever heard of such a thing?

We have.

Our babies died before they were born. But they were born. Don't you see? Our babies didn't just die! THEY WERE BORN TOO!!!!

If I could help anyone on the outside of this isolating bubble to understand one thing, it would be that. Thank you for grieving with us over the death of our child. But please do not forget that our child was also born. We have a story to tell. Albeit a very sad one, but we cannot control that. Do not shy away from listening to our very special story. Do not trivialize our baby's birth simply because they happened to die first. If you get the sense that we want to share our story, our pictures, our life changing experience of giving birth to a baby, please do not shut us down. Encourage us, listen to us, validate us.

I had two very distinct, very different, and equally impacting interactions in the weeks that followed Lily's birth. The first one is not uncommon, and I imagine many mothers of babies born still have had very similar experiences. I was talking to a small group of mothers who were telling their birth stories, and like mothers do, we were sharing the good, the bad, and the ugly parts of having our babies. I talked about my twins, and had the absolute attention of everyone at that table. They asked questions, wanted me to elaborate, laughed at some parts and winced at others. And then I mentioned a small detail about my birth with Lily, something very unimportant like the food they allowed me to eat when I was in labor with her, and no one, not one person, knew what to say. As if the very mention of Lily's birth was totally against the rules and I had in one fell swoop ruined what had been a very interesting conversation. I wanted to say, "I'm sorry, I forgot I wasn't allowed to talk about the birth of my daughter because she had the audacity to die first." But I didn't. But one day, I just might.

The second one was not long after I had Lily. A friend was bringing us dinner, and while she was there, she noticed a small album on my coffee table that had Lily's name on it. She asked me, "Oh Karen, are those pictures of Lily's birth? Would you like to share those with me? I would love to see them."

This friend did so many things with that one interaction. She mentioned Lily's birth instead of referring only to her death. She noticed that I obviously cherished those photographs and memories because I very proudly displayed them where anyone could see them, and she took that as a cue to ask me to share. She gave me the opportunity to share my daughter with someone, and, as a mother, who wouldn't want that? She validated that Lily mattered, that her birth was significant, that she was worth sharing, and that I had every right to share her. She put whatever anxiety she may have had over looking at some very sad pictures aside and put my needs first.

A friend once reminded me that we must educate others with grace. I cannot expect people to know what to do or what to say about the birth and death of my daughter. But I can tell them. And I can show them grace when they fall short. So this is my attempt to educate with grace. If you take one thing away from reading this, please take away this:

The death of my daughter does not negate the birth of her. Her date of birth and her date of death were backwards, but they were. They happened. She died, yes, but she was also born. And that is something to be cherished.

If you ever want to see a mother, any mother, glow, ask her about her child. Compliment her on them. Use their name. Tell her she has such a special story and that her child is so blessed to have her as a mother, because no one would love them like she so obviously does. It doesn't matter if her child lived or died, because her child is still her child. When a child dies, our mothering of them does not. We continue to love them, to cherish their story, no matter how short it may be. Our memories of them do not disappear, and their existence is not erased simply because it has ceased here on earth.

We are still mothers. They were still born. We would be honored to share their story with you. And trust me when I say, you would be honored to hear it.