Tuesday, September 29, 2015

The Introduction

by Kellie Soper

It happens often, but I'm still not used to it. 

We will be somewhere...an event, a church gathering, that requires an introduction. I'm still not used to saying it all out loud

Most recently, we were sitting in a giant circle of tables with other couples, the kids were off playing in childcare. The leaders of the group say, "Please share your name and the parish you attend and how long you have been married."

A huge sigh of relief floods over me. Thank goodness. They didn't ask us to introduce our kids. For this one moment I might just get to feel "normal."

The introductions begin and there is an interruption, "Don't forget to share about your families!"

Luckily we are not the first couple to share, but the panic slowly starts to rise in me. I rehearse it in my head all day, every day. But saying it out loud is something completely different. I can feel my heart pounding in my chest. My hands begin to shake, and I can't breathe. I look over at my husband and I see him trying to swallow the tears forming in his eyes. It isn't any easier for him to say it. I actually get to a point where I am seeing spots I am so overcome with nerves.

How do I word it? What exactly do I say? Do I let them know how new this really is to us? 

It's finally our turn. I grab my husband's hand and with tears stinging my eyes, and my voice shaking I say, 

"My name is Kellie and this is my husband, Jason. We have been married 3 1/2 years. We have two perfect kids. Ted is two years old and Lily is nine months old in Heaven."

Everyone nods and smiles and I catch a glimpse of my best friend sitting across from me wiping away tears.

One of my greatest struggles with losing Lily is thinking about what my son has lost. His sister who should be crawling after him and giggling at him as he builds his trains or tickles her. His sister who he should be sharing his room with. His sister who should be right behind him in school. His sister, who should be here on Earth with him.

But these difficult moments that almost swallow me whole, remind me that he is not alone. He is not an only child. He has his sister looking down on him, smiling and giggling at all the silly things he does and he will have her forever. And in my heart of hearts I know that he will be a better man because he has his sister.

So I continue to ask for grace and strength, and with tears in my eyes and a shaking voice I continue to say out loud, 

"I have two perfect kids. Ted is almost 2 1/2 and his sister Lily is ten months old in Heaven. We are a family of four."

~ ~ ~

Kellie Soper lives in Arizona and is wife to her amazing husband, Jason. Together they have two beautiful children, one on earth and one sweet, perfect soul in Heaven. Ted is a wild, silly, and rambunctious toddler. Their sweet Lily Frances was born sleeping on November 12, 2014. They learned at their 18 week ultrasound that Lily had a fatal neural tubal defect the doctors said was "incompatible with life." Kellie and Jason both knew Lily was not a "decision", but their precious daughter and they believe her life was of value, no matter what. She carried Lily with love for 42 weeks and 2 days. They miss her every single day, but are grateful for the honor and privilege of being her parents. You can read more about their family on Kellie's blog, Life and Love.

Tuesday, September 22, 2015

Thank You for the Healing

We can talk about babyloss now, and I am so relieved that we are having this discussion; that our losses are being validated, and our children are being remembered. I was thrust into this community 18 months ago, and the progress we've made in this short time is astounding. People are acknowledging our need as mothers to hold our dead or dying babies. To dress them, to bathe them, to speak of them, to keep their special 'things', and to memorialize them forever with pictures, funerals, hand/footprints, etc. I'm beginning to see society understand how much of a necessity this is for our mother souls.
And I couldn't be more thankful.

When you sit there and listen to me mention my daughter who left this world too soon without changing the subject or walking away...Thank you.
You're weaving another stitch into that broken piece of my mother heart. You are giving me permission to speak freely, without censors for your own comfort. That's when a little healing occurs. You may not realize, but that tiny (possibly insignificant) conversation has meant much more to my healing journey than you might know.
And I notice it. I notice when you allow me to say her name or slip pieces of her story into conversations...Thank you.
Again, you are helping to pave the road in my healing. My heart NEEDS those moments. My heart feels full after those open conversations, truly. Because I want to mention her and our story. I want to talk about our journey and my baby girl's short little life. She may be gone to you, and that's ok, but she is still in my life every day. And for you to recognize that is a huge deal.
It's the little things when dealing with child loss that mean the most. When you 'like' our child's photos on facebook (as small as that sounds) it feels good and I appreciate it much...Thank you.
When I'm sent beautiful quotes or pictures of butterflies, it seriously sends a wave over my heart...Thank you.
Our society is starting to get it. More and more people are understanding that we can't simply 'move on' from this child we created. You see that we carry them in our hearts with us.
We can have this discussion about our babies and about loving them unconditionally. I'm seeing this discussion and I'm seeing more and more empathetic hearts. You understand that they are our children, and dead or alive we need to share about them.
When you do that, when you understand that need and discuss our stories, you are the healing. You are the mending. And I thank you.
~ ~ ~

Christine Russo is a wife to an amazing, supportive husband, and a mommy to Angel Gianna Marie, and her little brother, Romeo. She carried Gianna after receiving a fatal diagnosis halfway into her pregnancy. Through the love and spirit of their special daughter, who means the world to them, they wish to help support other families who have to say goodbye to a piece of their heart.

Wednesday, September 16, 2015

My Baby Died: Please Allow Extra Grace

By Megan Coker

Dear Family and Friends,

Perhaps you are having a difficult time; Someone you know lost a child. You’re not sure what to say or do, and you’re confused as to why the only thing they can focus on is their grief. Your friend seems selfish and absorbed in her pain. This is obviously very hard for you- you should not have to deal with this because she should not have to deal with this. It is tough to see someone you know suffering. I wish there were a handy manual on how to talk to your friend, but there just isn’t… because there’s no manual for what your friend is going through.

But here’s the thing, I am your friend.

I want so badly for you to understand what I’m thinking and feeling, but I also never want you to come close to being able to understand.

The best I can do is tell you what it’s like for me, and then maybe you’ll give me more grace as I learn to live without my baby. 

What is it like for me?I will try to explain.

We were watching “Shweekend” the other night: Shark Weekend. It’s been a while since we had cable channels beyond local news so we missed Shark Week this year. But apparently Discovery Channel capitalizes on only sharks so much that they must designate weekends to programming them as well. That, and “Naked & Afraid”. (We’re not watching that show.) Anyways. We were watching a documentary on a shark named Dynamite and his learning to breach to catch his food. Near the end, he finally catches himself a seal. 

The seal saw it coming but didn’t have enough time to prepare or run away from the devastation that is going to swallow him whole. Dynamite shoots straight up out of the water with the seal clenched between his teeth, then takes him back down under the water where he is eaten and never seen again.

I feel like the seal. Carrying to birth after being given a fatal diagnosis is like watching the shark coming for you but not being able to save yourself.

Thanks to our new channels I can also find myself awake at 1:30 a.m. actually focusing on the infomercial because it is distracting. I don’t want to focus on my grief. Understand that I am not trying to be sad. I am trying to keep sane. So I know I have to be sad. I am sleep deprived thinking about this in circles, and also about ordering a $500 wheelbarrow, just in case.

I am paranoid of what you might think of me. Am I acting appropriately? I worry once a day over what you and our mutual friends talk about when I’m not around. If I don’t show up at the party, will you assume I just can't pick my head up today? If I show up early to the party with casserole in hand and smile on face, will you assume I am “over it”?

I’m not over it. I never will be! This is the new normal me. If you cannot accept that I will never be ok with losing what I’ve lost, that’s all right... but we should not be friends anymore.

You don’t have to say anything special to me: just remember me. The best thing anyone has ever said to me was “I don’t know what to say, but I do want you to know that I’m thinking of you”, right in front of my face, tears in her eyes. You don’t have to know any words. It is comforting to me that you don’t. 

I worry about people who know exactly what to say in the face of tragedy- either they are really good with  words or have seen too much of it. There’s a whole list of things not to say, but there is not a single right thing to say. For me, if you avoid clich├ęs and just sincerely care there is so much solace in just saying you care.

Please stop telling me to let you know if I need anything. I will not pick up the phone to call you over to pick me up off the floor or lie with me in bed. In the weeks following the funeral I will not tell you that we’ve had drive-thru burgers 5 times this week because neither of us have the gusto to cook even macaroni and cheese. If you want to help, if you feel like you need to help, just help.

I had oral surgery at the beginning of this month and though I tried not to let them go out of the way, sweet friends brought over soft dinners so it was the last thing we had to worry about.

Before that a friend in the midst of grief due to her third miscarriage in a row invited me over to just sit- she didn’t force me to talk but she didn’t try to change the subject when I talked either.

It's hard for me when you just lay out an open invitation: “I’m here if you need anything”. I will not go out of my way to tell you what I need. What I need is so inconvenient for me, so I try not to inconvenience anyone else.

I need to lie down and I need to get up. I need to be quiet and I need to scream. If you want to join me, you’re the one with the open invitation.

Please go easy on me: it has been two and a half months and I still hardly want to leave the house. I am in a new place, even further away now from the place my baby is buried. Sometimes I want to come over. Sometimes I want to go to lunch. And sometimes I really do just want to stay in the bedroom with the blinds drawn. I try not to flake out on plans, but I can’t predict what state I will approach them in. It  might be better you view me as a flake.

I cannot be in large groups of mothers. I cannot swallow the blood in my mouth from biting my tongue when we bring up everyone’s child but mine. I cannot sit still when you all begin to complain about parenthood. “You’ll understand one day” and “just you wait” are phrases that make me cringe. 

I would rather be up all night long with a colicky baby and not have a chance to shower for three years and give up brushing my hair and have a messy living room all the time and fight dinner time/bath time/bed time and deal with an embarrassing meltdown in the Walmart than have to suffer another hour without my kid. Those are things you’ll never understand and so I can’t tell you “just wait and see”. I hear you all talk so insensitively about parenthood, then I’m sure when I leave you tell each other you just can't imagine yourself in my shoes.

Everything is mundane. My favorite foods taste like dirt. I am indifferent about things that used to matter and now so hypersensitive about things that didn’t matter before. When I’m not having a meltdown, I am emotionally numb. Not physically though, my body literally just hurts all the time.  I feel as though I’ve had a harder time recuperating from birth, but I know it is just my body trying to carry my heaviest heart. Loss hurts.

I function on autopilot. There is a beginning of a day and an end. I miss a lot of what happens in between, and I just don’t care about most of it.

When you ask me if I’m jealous, it is a loaded question.I’m genuinely happy for you, my pregnant friend, my newly-birthed mother friend, my mom-of-eight friend, and even my happy-without-kids friend. But I am also sad for me. I am envious- watching strangers with babies the age my Eden would be now, seeing posts by other women going about healthy pregnancies and complaining about how long pregnancy is (it's so much shorter than I wish it was)… 

I am sad for what ignorant bliss I didn’t get in pregnancy and what I have had taken from me in motherhood. But know this: I am not bitter. I am so elated to see the miracle of life around me. Just be patient with me when my face looks like I’ve been punched in the gut as I hold and caress your precious, healthy new baby’s face.

I will try not to show this around you, but know that few things make me ragey the way a parenting debate does. I don’t have my child here to argue the best way to feed her or the best place to put her to sleep. I don’t have a trophy to show how well my medicated birth went, that there’s no need for the “natural childbirth” pedestal and it doesn’t make you a better mother. I can’t join these debates because I’m too busy trying to figure out how to parent my daughter that’s in Heaven. You’re all moms just doing the best you can, so why can’t you all just mind your own?

I am angry sometimes. In my midnight fits of hyperventilation I ask a lot of “why’s” and I repeat the “this isn’t fairs”. I’ve turned into a four-year-old. I ask that you can hold my hand and not try to explain that everything happens for a reason and just walk with me through the swamp that my grief is. You can’t possibly produce a good enough reason for why this has happened, and my anger is justified. I haven’t lost faith in God, but I’m upset with Him. That’s allowed. Don’t try to change me where I am nor rush me past a necessary stage of grief by telling me my anger will do no good.

Speaking of stages of grief- they don’t go in order like the diagrams would tell you.  (as a matter of fact, there are no stages of grief at all). In one day I complete the entire cycle, in one week I am stuck in one spot. Sometimes I’m so happy and glad but that does not mean I’m back to being “me”, sometimes I’m so depressed and lost but that does not mean I’ll be the same way tomorrow.

Try to avoid the logic of my age and ability to reproduce. “You’re so young, there will be more”, and “sending baby dust for your rainbows” are not helpful offerings. One day, I’ll be ready to be a mama to Eden’s siblings. But right now, I don’t want *A* baby, I want *MY* baby.

Know that it is much more comforting to me when you don’t turn the conversation to my next children and just focus on the one I lost. Besides, I personally don’t like the term “rainbow baby” very much at all. To me, it implies that Eden was a storm. She isn’t a storm, though grief does feel like a flood. I know that many find comfort in the rainbow as God’s Promise of hope. They call their subsequent babies  rainbows. That’s fine. It works for them. But I wasn’t promised a child after loss, I wasn’t promised a child at all. I know that God’s promises can be and will be fulfilled in my life if there are no more babies for me. Though my next child(ren) may make life easier, they will never make the blow of my loss softer. This is something I know.

I held her as she breathed violently and I kissed her cold body goodbye. No warm child will erase the chill of her on my lips, as equal as my love will be.

It makes me so glad to just hear her name out loud. Even if it’s only to say you thought of her. If we’re focusing on my children, let us focus on the one that existed. I’ll never talk to you about the children you don’t have yet while we are on the floor playing with your twins. I don’t need much, my friend. Just to know that she isn’t forgotten and that you aren’t trying to push her away.
Eden Olivia Coker
I am suffering. I need you to tell me that it’s ok when I bounce back and forth between extreme darkness and radiating light. In one breath I can say four things:

- “I don’t want to kill myself, but sometimes I don’t want to live anymore.”
- “I can not imagine a more purposeful life than just giving one to her.”
- “This is not supposed to be my life.”
- “I am so blessed just to know and feel this extreme love.”

I gave birth! Congratulate me. I’m a new mama!

I lost a baby! Mourn with me. I’m a bereaved parent.

This is hard for me, so I can see how it will be hard for you, too. I will be patient with you, I promise. Don’t be afraid, I am not contagious.

I’m thankful, so thankful that you are here. That you are trying. I love you just for trying. I love you just for attempting. I may not always show my gratefulness in the best ways. But I know that you will try to understand that too.

You’re helping me by choosing to walk through it with me, so I will help you by trying to explain this stuff, by writing out these words to tell you what I am these days, to tell you the one thing I need most: patience.

This is my new life. I will probably be a bad friend for a while. My soul is consumed with this loss of losses. Please, allow me a little extra grace.

Love me in my pain and help me celebrate having something to be in such pain over.

~ ~ ~

Megan carried Eden Olivia to birth in June 2015 after receiving a diagnosis of a severe Congenital Diaphragmatic Hernia in the Bilateral form. Eden lived for 40 minutes. Megan is Ryan’s wife and together they follow his Army career. She has found a way to honor Eden’s short life in capturing the beautiful moments of others through starting her photography business, Eden’s Garden Images. Each day has its new challenges for both Megan and Ryan but they are learning to lean on each other through it and work steadily on strengthening their marriage. Megan finds healing through writing about Eden and remembering their beautiful time together.

Wednesday, September 9, 2015

Dear Death

By Bethany Conkel 

Dear Death,
It’s been 3 years since we met on September 10th. It was a beautiful day. Sun streamed through the hospital window as if everything was perfect in the world. It didn’t seem like the type of day where Death and a new mom would meet.
We both arrived at the hospital that morning with the same purpose: to greet a special little boy. Although our purpose was the same, our approach was very different. I came eager, ready to hold my little boy for the first time and welcome him into the world. I couldn’t wait to tell him how much we loved him and how proud his father and I were of him. I impatiently waited for the moment where I would be able to gaze into his eyes, kiss his little cheek, hold his precious hand, and admire his tiny toes. I came ready to soak in every ounce of my baby and shower him with as much love as I had in my being. I wanted to be sure that if he only felt one thing on this earth, it would be the love we had for him.
Your approach was much different. You were distant at first, waiting and observing from the shadows. I was thankful that you did not make your presence fully known right away, but gave us some time as a family to cherish our sweet baby boy. As time passed (way too quickly from my perspective) you slowly made yourself known. Then suddenly, I realized you were there, no longer in the shadows, but standing next to my boy, ready to take his hand and escort him into heaven.
I had been told many months before that this was going to happen. I was told that regardless of what I did, or how I approached the pregnancy, delivery, or care of my baby, that there was no hope. No avoiding you. I was told that YOU WOULD WIN.
Yet, in that moment, as I watched you gently greet my son and carefully take his hand, I did not feel as though you had won. Tears streamed down my face and my heart broke as I watched him leave with you, but deep down I knew this was not the end.
You had not won…  
Did my boy physically die that day? Yes, I don’t deny that fact. Yes, you fulfilled your role, just as I had fulfilled mine. But, Death, where your job ended that day, mine did not.
Over the last three years I have had the amazing privilege of helping the meaning of my son’s life continue to impact others. Yes, he died that day – but the meaning of his life, his importance, his legacy, his memory– none of those things died. They are very much alive. Growing. Developing. Building. My job has been to help his meaning continue to live on, even though he is no longer here.
No, You did not win that day!
So many people told me that, you -Death, were the end. But, that simply has not been true.  And, as long as I am alive and continue my job of keeping his memory alive, you will never truly be the end. You will never truly win.
I know one day we will meet again. One day you will arrive to take my hand and escort me into eternity. Although I do not look forward to that day, I do look forward being able to meet my little boy again Heaven Side. I would like to think that I will smile as I take your hand, knowing that I am holding the same hand my boy held many years before. Hopefully, when it is my turn to go with you, my loved ones will not allow you to win that day, rather just allow you to fulfill your role.
In a way, I feel as though I should thank you. You did a job I could not. You assisted my boy in meeting his Lord and Savior. I may have not liked it when you did your job, but I’m glad to know he was not alone in that moment. I’m glad to know he went from my hands, to yours, to our Lord’s. My momma’s heart is at peace knowing he was always holding someone’s hand.
So, Death, as I reflect on our meeting 3 years ago, I’m glad it was different than I was told it would be. I’m glad you were not the end and that you did not truly win. I’m glad the essence of my sweet boy lives on and that I get to help make that possible.
Amalya Nathaniel’s Momma
~ ~ ~
Sweet Boy,
We love you. We miss you. We are proud of you. You have continued to impact the world in mighty ways, and for that we are thankful. We are so glad you are part of our lives. Happy 3rd Birthday and Heaven Day. We look forward to the time when we get to see you again.
With all our love,

Mommy and Daddy
~ ~ ~

Bethany Conkel lives in Ohio and is married to her wonderful husband, Eric. She is the mommy to two amazing children – one who is in heaven, the other here on earth. Bethany carried her precious son, Amalya Nathaniel (meaning: “work of the Lord”, “given by God”) to term after receiving the diagnosis of anencephaly when she was 11 weeks pregnant. Amalya lived for 1 hour and 20 minutes before taking hold of the Lord’s hand. After he passed, his liver, pancreas, and whole body were donated to scientific research. Bethany has since created a website about neonatal organ, tissue, and whole body donation called Purposeful Gift to help other families explore the option of donation. She is also a certified Birth and Bereavement Doula through Stillbirthday.com and serves with Sufficient Grace Ministries.

Monday, September 7, 2015

Empathy > Sympathy > Pity

Everyone knows the feeling. You hear of a terrible tragedy in which a child (or children) has died and you cringe inside. You watch the story on the news, you share the article on Facebook, you talk about at it work. It evokes feelings of sorrow, disbelief, and confusion. It also evokes a feeling that no one would ever want to admit… relief. Relief that that horrible story isn’t your story. Relief that your family is safely tucked in bed and away from harm. Sadly, this is a natural human response. You look for your best interest above all else. You stop watching the news, you stop reading the paper, and you begin to shield yourself as much as possible because it is just “too difficult” to see. You choose comfort over compassion. Sure, it is terrible that bad things happen, but not all that terrible as long as it isn’t happening to you.
You begin to pity others, but you don’t sympathize with them. This type of thinking/acting is devastating. Pity creates distance, and implies that you are above their pain. The more you distance yourself from tragedy, the more you alienate the people who need compassion the most. You feel sorry for them, but glad for you. When you think of their situation, you feel better about your own. Their pain reveals your joy. This is NOT okay and your thankfulness should not stem from tragedy of others.

From someone who has been there, I’m asking you to please forget pity. If someone you care about has lost their precious child, choose sympathy. Sympathy is not a natural response. It takes a conscious effort. Please make that effort. Allow yourself to imagine the pain, to feel what you can. It may be difficult, but remember, it’s not even close to the reality of the pain that they feel, and will continue to feel every day. You may want to relate but please don’t compare any other situation to the loss of a child. Your friend knows that you don’t understand (and they would never want you to), and a trite comparison only does harm. You don’t have to fully understand their pain to understand the magnitude of their pain. And more importantly, they don’t need your understanding, they need your love.

And then there is empathy. If you can empathize, please do. If you have lost a child (or a grandchild), please share that with your friend. Not in the sense of “I got through this, you can too”. But in the sense of “I have known this heartache and I am so sorry that you now know it too.” Acknowledge that though you have had a similar experience, you know that no one feels that pain the exact same way. The bond between parent and child is like none other and is completely unique to each person. Through your empathy they will feel less alone. Your empathy will encourage them to keep going when they want to give up. And they will see that there can be life after loss.

~ ~ ~
Alex Hopper is a writer in North Carolina. She is married to her beloved, Trent, and mommy to her angel, Cyrus. Cyrus was diagnosis with a fatal birth defect in the womb at 12 weeks. He was carried with love until he was born at 33 weeks on November 25, 2013. He lived for 1 hour and 9 minutes. His life was short, but his legacy lives on.
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