Day of Despair

by Kellie Soper

Some call it their "D-Day". The day they learned of their child's fate. The day they learned that every hope and dream they had for their child was shattered. The day they may have been told their child was "incompatible with life".Or the day someone referred to their child as an "option" and no longer a person. The day they received the diagnosis that shattered their world as they once knew it.

Our D-Day was two years ago. At times it feels like yesterday, but mostly it feels like an eternity since that day. I honestly can barely remember what life was like before that day two years ago. 

But I can remember very clearly every single moment of that day. Every insignificant detail, every feeling that I felt.

It started out as a great day. My son Ted had been sick all week and he was finally feeling better. Our dear friends' daughter was just born the day before. Our other dear friends were getting married the next day. Sandwiched in between was our "routine" anatomy scan. I was so excited to see our baby again. I had no feelings, no intuitions that anything was wrong. In fact, I felt wonderful...on top of my world just before it crumbled below me.

Jason had the afternoon off so we were going to have a late lunch date after. On the way to our appointment, we were trying to decide where we wanted to eat and talking about how much fun our friends' wedding would be the next day. We were in much need of a date night.

I thought our "routine" anatomy scan was going normal. I couldn't remember the "order" of Ted's ultrasound to know if this was the same or not. It didn't phase me at all that we hadn't seen our child's profile. We saw ten perfect fingers and ten perfect toes. Two lungs and two kidneys. And we saw our baby's heart...four chambers, beating perfectly and beating strong. In a few minutes, I would learn for the first time that a perfect and strong beating heart wouldn't be enough.

Then the doctor came in and shared with us a word that I barely knew and immediately became my greatest fear realized. I learned what the word anencephaly would mean for my family. I learned that every hope and dream I had for my child was stolen from me.

And then I learned the real meaning of despair. It's the complete loss or absence of hope. 

That's where I was two years ago...completely hopeless, utter despair. I thought I knew heartache before. I thought I knew what it was like to lose someone you loved. Really, I didn't know at all...not until this moment, two years ago. 

True despair. 

We drove home in silence. The only sounds were our tears and trying to catch our breath. We laid on our bed together and just cried. I told Jason I was so sorry this was happening to him. It made him cry even more. 

After awhile he left to call his parents and pick up Ted at our friends' house. I can only imagine how hard it was for him to go pick him up and tell our friends by himself. 

I just laid there sobbing and praying. Over and over, I begged God to not make me do this. I begged Him and begged Him to take her then. I didn't think I could endure the next five months. 

Two years later and I can't even begin to explain to you the guilt I carry for ever thinking that, let alone screaming it out loud. But that's where despair leads you. That's what the absence of hope looks like. 

Even after her birth, even after the day I held her for the last time, even after my last kiss on her cheek and seeing her in this life forever...even after all of those moments, I can honestly say, nothing compares to the despair of her diagnosis.

It was the worst day of my life. 

I cried every single day for weeks. 

Slowly, somehow, by the grace of God and prayers, every day, little by little, I was able to pick myself up a little bit. We talked to our priest. We met with another family who had faced the same diagnosis and survived. We had unbelievable support from family and friends. We learned the very definition of community.

As the months passed, the despair still lingered, but it was overpowered by grace. The grace of God wins every time when you choose life. After the hardest two years of my life, I believe that whole-heartedly. It was never strength, it was always grace.

Grace reminded me that my daughter was a precious gift no matter what. She deserved every chance of life possible. She is not a definition, she is not an option, she is not despair. She is a person. She is my daughter. 

While these past two years have been harder than I imagined, I have no regrets and I would not change anything. I would have given anything to save her, but I would never trade her for another. She is unrepeatable and irreplaceable. She is my precious daughter.

I have learned more and grown more in these past two years than all my years combined. I have learned some hard lessons about how people close to you deal with your grief. I have learned that my family is more amazing than I ever dreamed they could be. I have learned that the world keeps moving despite your constant pain. I have learned my husband is the most compassionate and sensitive man I have ever known and my love for him today far exceeds the day we were married. I have learned how cruel this world really is and I am grateful Lily does not have to experience it. I have learned to never take a single day for granted. I wake up every single morning thanking God for another day with my family all the while longing for glimpses of Lily. 

More than anything else, I have learned that Lily is worth every second of heartache I will face for the rest of my life. I love that she is my daughter. 

Holding her in my arms helped me let go of the despair. Kissing her cheeks filled my heart with so much love it could burst. Memorizing her perfect hands and feet carries me through each day. Remembering how much love and peace filled the room when she was born makes it all worth it.

I am not the same person I was two years ago, I'm not even close. But the truth is, I don't want to be that person again because that would mean I missed out on experiencing a love that was so perfect and so pure. All she knew was love. I would have missed out on knowing Lily and loving Lily and that alone is worth a life time of heartache.

~ ~ ~

Kellie Soper lives in Arizona and is wife to her amazing husband, Jason. Together they have three beautiful children, one on earth and two sweet, perfect souls 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. Their youngest daughter is Clare Therese. She met her big sister in heaven after a few precious months on earth with her family. You can read more about their family on Kellie's blog, Life and Love.

After the Diagnosis: A Love Letter

To The Mother Who’s Learned Her Baby Won’t Live
(Advice From Carry-to-Birth Families)

There are few days as vivid as the day a doctor tells you that your baby will likely not live outside your body. The colors of the room, the smell of the hospital soap on your hands when you bring them to your face, the sound of a phone ringing down the hall, the crack in his voice when he says, “I’m so sorry”, the way every specialist in the room has a face that just blurs through your tears.

In a perfect world, these would be our worst days… just the agony we feel when the probable outcome- a prognosis of death- has been put on the table.

But this world is not perfect and so, for many of us, our worst days do find themselves taking place simultaneously with our best days- the days our very loved but sick children are born.

As women who have been in your shoes, and as a part of the majority whose babies with fatal diagnosis do leave us, we want to share our hearts with you.

First of all, we are sorry.

We don’t want you to be here.
We don’t want anyone to ever have to walk the path of child loss, and we pray for an end to all terminal birth defects.

But since you are here, we are with you. Our hearts break with you. We will love and cherish your child with you.

We will walk beside you in your anticipatory grief. We will rejoice with you when your baby arrives in your arms. We will mourn with you when you have to say goodbye.

And we will be here in the sacred dance of pain and joy that follows. We are a community of sister-mamas that have nothing but open arms for you as you walk this unimaginable path. That’s all that love can do- love for our babies creates this tight knit group of people that can relate and love on each other.

•Take one moment at a time. Try to feel and treasure the kicks and movements when your baby is in the comfort of the womb. Don't be afraid to plan for the possibility of your baby coming home ... even though my son didn't make it home, having baby things in the house after he passed was actually comforting. – Aileen

•Make memories with your baby. Some ideas are to keep a journal of your pregnancy, see a favorite sports team together, or take maternity photos. When I met my daughter, I remember thinking that every second of heartbreak over her condition was worth bringing her into the world, and I continue to be amazed by the way that she continues to inspire and change lives. - Kristina

•If you want to pray for the best, pray, have others pray over you. It's okay not to tell strangers your little ones diagnosis and just find joy in being the regular pregnant lady. It's okay to have a shower and let friends love you. Your spouse may have a different approach, that's okay. I was told to terminate and that NO ONE EVER carries to term with this diagnosis, not true because I did. It’s okay to be scared. It's okay to hold your baby after they've passed and its okay to stop holding them soon after. You will find the strength to do what's right for your situation in the moment. Talk to the Lord, and meditate on the scriptures that speak to you. Listen to worship music. Finally, see a counselor type now and through the first year after. –Bethany

•No child is defined by his or her diagnosis. Make memories of your journey while you carry your child. – Jenna

•Be hopeful for a "miracle ", but also be prepared for a miracle of different sorts. Make a list of the all the things you want to have; to do; to sing/read, and all the ways you want to connect. Then, do them (alive or having had passed). Buy duplicates of everything. Let people help you. – Kristin

•Enjoy every minute you have with your little one. Even if they are gone you will never get this opportunity again. Hold them, cuddle them, kiss them, dress them how you feel like. Your little one is more than their diagnosis. – Brittany

•Hope is what gets me through this time. But I also have to be realistic. -Emily

•Some may think a miracle didn’t happen for my family, but it did. My son was and is the miracle. Because even in death his life continues to manifest such power and such hope. The lives he has touched, the impact he has left — it is all pretty miraculous to me. How one tiny little baby, who never took a breath, could reach the hearts of others and speak to them in a hundred different ways is nothing short of a miracle. Not exactly the miracle everyone had in mind. But I now know there are different kinds of miracles. Little ones that present themselves in unexpected ways. We just have to be able to see them through the disappointment of not getting the miracle we wanted more. I had to rid myself of the false idea that miracles only come in grand gestures of divine intervention. Because sometimes miracles dwell even where there are crushed hopes and dreams, and those are the ones that are so incredibly hard to see. - Jessi

•One of the "gifts" of receiving our diagnosis when we do is to be able to make memories with our child and to savor every moment. I know that looks so different for so many. For me it was cherishing her kicks, making her lots of hats and picking out special outfits and blankets. It was learning to be 100% present in the moment because I had no idea if we had a tomorrow. My diagnosis day is still the hardest and worst day of my life, I am still grateful for it because it gave me 5 1/2 months to cherish moments I might have looked over. – Kellie

•You are amazing for walking this path. Truly courageous. Cry when you need, and remember your baby is here with you now. It's not over yet. Focus on loving your baby with all your efforts. In the end, you'll know you did everything a mama can do. And I promise, saying hello will be the best day of your life. - RaeAnne

•In the midst of it, you can choose to find the minutes of beauty, while simultaneously cursing the injustice. – Sarah

•You are brave. You are doing a brave thing. When people tell you that, they mean it. It takes courage… and well, you have it. Give yourself the most grace, and extend it to everyone around you. They won’t understand unless they’ve been here. It’s good that they don’t know. Just smile and nod and then do whatever feels right for you, moment by moment. – Megan

We want you to feel loved and supported. We want you to vent to us, to share your joy with us, to laugh and cry and smile and frown with us because we will do it with you too.

Perhaps you are feeling overwhelmed mostly at this moment. Here is a link to many wonderful resources for you- just the tip of the iceberg. If there is something specific you are looking for and can’t find it, we will be happy to help.

Welcome, Mama. We are the mothers who have gone before you and will go after you. May you feel the warmth of our arms wrapped around you. You are not alone.

We are so sorry that you’re here… but we will love, honor, and remember your precious child with you.

Please join us in the private group for mothers who continue pregnancy after a fatal diagnosis. We are here for you <3