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Lainey's Story

Posted by Rachael Johnson on

I have sat down to write this so many times... They say time heals all wounds, but it doesn't, not when you lose your baby girl. In a way, I think it scares me to dig deep enough to tell her story the way it should be told. It's a limitless cave with no bottom that I have climbed out of. A space in my heart and mind that I seem to only revisit every year on her birthday or when I hear of the loss someone else has experienced. The years that have followed her arrival and departure on this earth have been filled with immense grief and beauty beyond compare. Not a week does by that she is not thought of. Our Lainey Faith changed our lives forever. 

In September of 2014 we found out that we were pregnant again after a heartbreaking miscarriage Christmas of 2013, our very first Christmas as husband and wife. For obvious reasons we were both overjoyed to be expecting again the next fall! Fast forward to our 20 week scan the next Christmas of 2014, we found out that our little baby was a girl *dreams come true* and that she had Anencephaly... I'll never forget the ultrasound technician leaving Cody and I in the room alone to get a double opinion on the scan. It seemed like it lasted forever. The kind of length of time where you know something is wrong. We were told to meet again with our doctor and this is where our lives changed. 

We had never heard of Anencephaly. One little word and diagnosis had us in shock. Our perfect little girl had a significant amount of her brain missing and unfortunately her condition wouldn't be compatible with life. We wept the whole night and for so many days after. We knew we had to make a choice that no one should ever have to make- to abort Lainey or to carry her as long as I could. I'll never forget how Jesus carried us in those first few days. There was only one choice for us and that was to carry her and to pray for her healing. I'll never forget when we came to that decision, it was one of those moments that will forever mark my life as a believer. 

The days that followed were SO HARD. Constantly crying, praying for healing for Lainey, being asked by strangers when I was due and what gender we were having, fighting against my fears, and feeling so alone by people that didn't what to say around me. This is when my life verse became Nehemiah 8:10. It says, "the joy of the Lord is your strength." His JOY became my strength. I learned a whole new level of the Faithfulness, Kindness, and Joy of the Lord during this season. People would comment on how strong I was during those 4.5 months that followed, but it was only by the grace of God that sustained me. 

I was induced at 38 weeks. Up until this point Lainey's vitals all looked great and there was no extra fluid to be concerned about which is a very common complication in babies with anencephaly.

My last journal entry before she was born read,"...Every ounce of pain I have gone through and will go through will be worth it just to hold her in my arms. Help me God to know today that "it is well". Help me to know how much you love me and care for our little family. We are declaring life over our little girl today and complete wholeness. She will shine so brightly for you Jesus and will share your miracles always. Like never before, give me peace that transcends all understanding. I let go. I let go. I let go."

Our time spent in the hospital delivering Lainey was marked by angels (my doctors and nurses) and immeasurable joy and sorrow. An hour before Lainey was born, her heart rate began to severely decline. I'll never forget holding my hands over her and declaring, "LIFE is Jesus name!". I had never had to have this kind of faith in my lifetime. From the moment I walked into that room to deliver my baby girl, that place was saturated with peace. God knew what we would need well before we needed it. And He gave us a beautiful little girl, born alive, that we got to hold for nearly 11 hours. There are no words to describe how heavenly that hospital room was. Anyone that walked in there felt it and felt her sweet spirit. It was like Jesus gave us a glimpse of Heaven before she went to be with Him. Until Lainey's very last breath, we prayed over her: Life in Jesus name. 

When she was welcomed into Heaven, these are the words we sang over her:

"Praise God, from whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heav’nly host;
Praise Father, Son, and Holy Ghost!"

...The following 9 hours after she went to heaven were my darkest. I spent the night with Lainey's lifeless body wrapped up in my arms, not ready to let her go. Not ready to say goodbye. My precious nurse kept coming in to tell me to rest, but I couldn't. It was the last chance I'd ever be able to have to hold her until the next morning when I'd have to send her away with a stranger... (These memories still feel incredibly raw). Only Cody and I held a funeral for her and followed it by a tearful, rainy drive up to Lake Superior. Our healing lake. 

Our baby girl fought so hard. And she taught us so much with her life. Every year on her birthday, May 9th, we mourn and we celebrate. With balloons and flowers and a picnic and all the other little things we wish we could do with our almost 7 year old daughter. 

Lainey, we are so thankful you existed, because you made us who we are today. You made me the wife and friend and sister and daughter that I am on this very day. I’ll be forever grateful for the gift of empathy that you gave me. We were forever changed when we became your parents. 

“Our wounds are deep, but they're not incurable. Brokenness is not the end of the story. Wholeness is the end of the story.” —Benji Nolot. Almost 7 years ago I penned this quote. At the time, only 4 months had passed since we said goodbye and buried our little Lainey Faith. Let my life & story be an encouragement to you, that you can get through hard things. The Hope I have in Jesus gives me victory over any trial I face. And though I still have heartache over missing and longing for my babies in heaven, I have a Hope in Jesus that fills the gap. Wholeness is the end of my story, no matter what I face. 

Lainey Faith Johnson - our bright, shining light from Heaven. May 9th, 2015

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  • Wow. ………There is a God!

    Harlan Johnson on
  • Thank you for telling your story. Your willingness to share the honest raw emotions is encouraging but very scary for me.

    Julie Langer on
  • I’m sobbing…my heart goes out to you both. Your Faith and Trust in God is incredible! I pray Blessings and Favor over your little family. Know you guys are so loved!

    Rachel Ostrowski on

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