Monday, May 30, 2016

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.

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 graceThe 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.

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