If someone had asked me that question 30 years ago I would have first of all thought they were horrible for even saying something like that, and then knowing that ‘no, I would never survive’.
I’m here to tell you we did. We survived. Our marriage survived. Our children survived. But not without a lot of battle scars. And if you are going through this difficult road, I just want to let you know, it’s going to be ok.
Lexie was born with trisomy 13. I was 44 at the time and let me tell you before you judge me about being too old, that all of my 3 previous kids were perfect, the child before Lexie was born when I was 42. Lexie wasn’t a surprise, she was a delightful expectation that was a gift from the Lord. We had gone through a difficult season the year before of losing my dad in a car accident and caring for my mom who was also injured in the accident and Lexie was going to get us all back into joy and a celebration of life.
As soon as she came out, there was a silence in the room and they whisked her away to the NICU. The doctors came into my room the next day and told me the most horrible news about our beautiful little Alexis. She had trisomy 13, was probably deaf, blind, had a heart defect, but the worst part was she was going to die. The doctors would consistently tell us that “she is going to die”. Constantly speaking words of death over her from the beginning she was born, but I had one friend, Linda, who told me in response to all of that “But God’s bigger than that!”
I didn’t know what that meant then. I thought a diagnosis of trisomy 13 was bigger than God and there was nothing He could do about it. As a matter of fact, I believed that He had created her broken . I mean, doesn’t it say in Psalm 139 “For you created my inmost being; you knit me together in my mother’s womb”.
And after all, don’t the scriptures also say “As the heavens are higher than the earth, so are my ways higher than your ways”, so I was just to accept what had happened, and believe the well meaning friends that told me she was a gift to just visit us for a short time and then go back to heaven. I would temporarily comfort myself with the thought that she had an assignment to help her mom and dad and siblings to get closer to God.
Lexie caught everyone’s heart. She had a cleft lip and palate and had to be fed from a tube. She struggled to digest her food and doctors were kind of confused with what to do with her. She had so many difficulties. We got her hearing aids, and she probably needed glasses, but when she was disconnected from her feeding system, she would take off across the room and find the dog food. She loved color and light and when her nurse would bathe her she would stick her head in the water and come up laughing so hard! Then we would all have to laugh with her. She had the best blue eyes that pierced your heart and her dimples were perfect. She loved her toys and we made sure to have plenty of them always surrounding her so she could make noises and laugh again and again.
We had quite a staff of nannies and nurses, as she required around the clock care, and we all became a family. Sometimes I would tell them about Jesus and they would tell me about their own lives and then some days we would pray. This became my ministry, and I was glad to do it. So many prayers happened in our home, and we held home group there, and had visitors come to visit us from different cities to pray for Lex. And for us. We needed it for sure.
I think when something this hard comes to a family, the prayers of desperation pull on God and He sends so much help. Especially sweet was the couple we met from the House of Prayer in Kansas City. Pamela and Lori Stead came to see us at the hospital when Lexie was little and they became our forever friends. We all warred together in the heavens for Lexie’s life with each surgery and became brothers and sisters in the Lord who loved each other deeply.
We had amazing brothers and sisters in Omaha at our church and I began to write letters to all of them to let everyone know what was happening with our little Lex. They in turn would send letters, prayers, or stop by the hospital. Writing this brings to mind one man I remember in particular who was in the middle of having his 7th child! And while labor was going on he ran over to pray for Lexie as she was suffering from pneumonia and they couldn’t get her off the ventilator. I was so blessed! I was learning how to trust God in everything.
At first I tried to prepare for her to die, but through the love and prayers of all of these saints I began to pray for her to live. I began to have hope. You know you don’t want to be vulnerable and have hope, because what if she dies? Will I make it? I think not. But part of the trust is to begin to trust God, that no matter what, I’m going to be ok. We do not sorrow as the world sorrows, because our hope is in heaven.
Well-meaning friends would tell us “We will help you bury her”, and that “You are being comforted with the comfort you will give others”. No! I don’t want that! I don’t care about any of that. I want my baby! I was so mad! But who did I need to get mad at? Was it the doctors that couldn’t figure out what to do? Was it my husband who tried so hard and wasn’t able to fix it? Was it my kids who were hurting so bad and didn’t know how to help? Or should I get mad at God? I mean after all, this is His fault right?
What I didn’t know back then was that I needed to get mad at the devil. His job is to steal kill and destroy. I’m sure someone tried to tell me that, including “Momma Germaine from church, who taught me all of my spiritual warfare scriptures”, but I had no idea that this was all the devil’s fault! And I could focus that anger on him!
Now I know some of you might not agree with me, and you might think God is Sovereign and this was His decision and that He allowed it. And that is where I am going to disagree. And it’s ok. That’s where I was for the last 20 years.
I believe that believing that lie kept me in grief and sorrow all these years. I could not really reconcile if God is good, why would He allow all of this horrible pain and suffering? It never really settled well with me and so I feel like I was disconnected from God in a way. I was obedient, but I couldn’t fully love with that pain in my heart.
Lexie lived for 3.5 years and captured all of our hearts. We were madly in love with her and believed that somehow she was going to live! Lexie suffered an infection and was not able to overcome it and her last night on this earth was something out of a heavenly dream.
A few nights before she went home to be with the Lord, my husband Mike and I were sitting on the floor praying for the Presence of the Lord to come and to comfort us and to walk us through these hard days. She had suffered a heart attack and the doctors believed she would only live a few hours, but it became weeks and we brought her home to love on her as much as we could. Suddenly our four year old Christian burst into the room and he crawled around us joining us in our prayers. He prayed with his little hands folded and his eyes closed, “Jesus, I’ll give away all of my toys if you just come and bring your presents.” Oh my! We laughed so hard! And he loved it that he made mommy and daddy laugh.
A few days later we heard that our daughter Amber’s friend had lost his mom to cancer and they were having a viewing. We wanted to give him a hug and let him know that we were there for him. On the drive to the viewing, I pulled out a hymnal that I had found and leafed through it and came to a song that was very special to me, It is well with my soul. I began to sing the song and Mike sang along with me. We made it to the viewing and hugged those young men and quickly made it back to the house. I think that song prepared us for what we had to do that evening.
The phone rang and it was my sister Patty. “Mom is not doing well, do you want to come to the hospital?” I was so raw. Dad died in a car accident a few years earlier and Mom was in the same accident. We had valiantly brought her back to life but then her sadness just turned into cancer in her lungs and she was not doing well. We had to put a “Do not resuscitate” bracelet on my mom the same day that we put one on Lexie a few weeks earlier. It seemed that they might go to heaven together! Death was all around and coming to my family again. I was frozen.
“Robbie! Get in here! “ Mike screamed.
“ No, I don’t want to go. I don’t want to hold her for the last time, Can’t we just keep going?” I ran into the room and grabbed her into my arms. We rocked and rocked and then… she was gone. We all cried and sobbed, even though she was in so much pain and we told her she could go, I didn’t want her to go. But then a great peace came over the room, and one by one friends and nurses came in and said goodbye. Finally my sister Patty got there. She said as she drove through the gates to our development, she felt like it was heaven’s gates opening and everything seemed to be in slow motion. She came into the room and we all began to talk about how important Lexie’s life was and how many people she had touched. That she would now be in heaven and I would get to see her some day.
“I know why I’m here.” Patty announced firmly. I knew she meant that she was going to accept Jesus into her heart. Our kids Dustin and Amber came up the stairs and came into the room and I told Patty to go down and talk with the many friends that had gathered downstairs and they would help her know what to do. We all hugged and cried for the loss of our little Lexie. Please don’t let this be happening Lord.
There are crazy moments in your head when these things happen because on one hand you want to scream “Everybody go away! I just want my family” and on the other you are so grateful for their comfort and their words. And you get to choose. The Lord was with me through it all and helped me to be strong and to invite those around us who loved us to share in our suffering and grief.
When the clock struck midnight, we carried Lexie down the stairs and walked her out to our friends Jon and Linda who were waiting in their car. We gently laid her on their laps and wrapped her little blanket around her and off they went to take her to the mortician. How could you ever repay a gift that huge?
I felt as if a hole had been ripped out of my heart and nothing would ever fill it. Just a big gaping hole. I slowly walked back into the room and ran upstairs to be alone. Our son Dustin was there and he hugged us tight and cried. We kept hugging to try and ease the pain.
I believe that death brings truth. Jesus and the deceiver were both in the room with us all. And all the things that I had been taught were being walked out and tested and truth was winning.
After I went back downstairs all of our friends were still there and Patty was there with them and Pastor Les began to share with Patty what had happened. He shared the story of Jesus and how he called the fishermen to come and follow Him. “Patty, tonight Jesus walked through here and He said “Patty, follow me. Patty do you want to follow Jesus?”
“Yes! Everybody hold hands!” She jumped up and we were in such joy we all stood in a circle as Pastor Les led her in a prayer to ask Jesus to be her Lord and Savior”. It was so supernatural and heavenly and I was thanking God for such a gift. Then she came over and said “Don’t I get baptized now?”
“Oh my, yes” I remembered I had taken Patty to a class at church about baptism and she had learned that came after the prayer of salvation! I asked Pastor Les what he could do for her next week at church and he smiled and said “Got a bathtub?”
In shock I nodded yes, and we all went up the stairs to our bathroom where Patty was going to get baptized. The clock struck 1:00 a.m. as we all walked soberly up the stairs. Mike came walking out of the closet with shorts and tshirts for everyone to put on for the baptism. I’m so grateful for Mike. He keeps things moving when I get frozen. Mike had a tshirt and shorts on too. I looked at him and said “what are you doing?”
“I’m going to get baptized too. I didn’t get baptized when I was an adult.” So on the hardest day of our lives, Mike and my sister Patty got baptized and prayed over. When we looked up through the skylight in the bathroom there was a hole in the clouds as if there was an open heaven. As though there were angels ascending and descending and I’m quite sure there were. Can you imagine the joy in heaven as they welcomed Lexie into heaven and then my sister Patty into the kingdom? We were all on our knees worshipping the Lord.
Pastor Ty sat with me a few days later and asked what we would like to say at her memorial service. I knew I wanted him to share about Jesus. What if there were those that attended that didn’t know Jesus and they gave their lives during the service? “And then, could we have baptisms?”
“I think you can do anything you want.” Pastor Ty gently responded. When we agreed that the baptismal would be filled up after the service I wrote another letter to let people know that this would be happening. I wanted a service to glorify God. I didn’t want to keep it hidden and private. It was another choice I had to make.
7 people gave their lives to Jesus and at least 7 more were baptized. And we found out later that several more wanted to come but they held back.
There was a Jewish girl there that had given her life to Jesus because she “couldn’t figure out why everyone was so calm about Lexie dying”. And at the funeral she ran down the aisle to get baptized. She later told me that I had told her that the enemy would try to lie to her and tell her that this was all a lie and that actually happened! She was fighting the voices but was able to jump up and run! And was baptized. She said that when they spoke in tongues she was able to understand them! Wow, God is so amazing, when we trust Him.
Sometimes I refer to this time after Lexie died as being in a dream. I likened it to a movie I had seen where a vineyard had been burned to the ground, smoke was everywhere, but there were still roots there and they could grow again. That’s what I felt about my life. I would ask people “how long is it normal to cry for a loss like that?” I was crying every day, and those days melted into years and never seemed to go away. I would have periods of joy and healing and then I’d get sucked back into the grief and sorrow until it became my identity.
I didn’t even realize it until I went to a bible school called Charis, and listened to Andrew Wommack share a teaching he called “Being self centered”. It was being self centered when we were constantly in grief and sorrow, because we were always thinking about ourselves. We were self-focused. I was so irritated with him and thought “He has no idea what my life has been like”. But the more it irritated me, the more I started praying about it and asking God. I saw that Jesus had taken grief and sorrow on the cross, and thought “Why am I carrying it around when Jesus took it along with my sin and sickness?”
I made a decision to get rid of grief and sorrow and to receive the joy He had for me. The last two years have been so full of joy I can’t quite describe what has happened. I turned 70 this week and I feel younger than I did at 60. I had no idea that the enemy had been suffocating me to the point of once again being sick and tired. So I’m here to tell you, that no matter what has happened to you, you can have joy again. Here’s a psalm that I love, and I imagine myself with my mouth filled with laughter and my tongue singing about what the Lord has done for us.
A Joyful Return to Zion
A Song of Ascents
126 When the Lord brought back [a]the captivity of Zion,
We were like those who dream.
2 Then our mouth was filled with laughter,
And our tongue with singing.
Then they said among the [b]nations,
“The Lord has done great things for them.”
3 The Lord has done great things for us,
And we are glad.4 Bring back our captivity, O Lord,
As the streams in the South.5 Those who sow in tears
Shall reap in joy.
6 He who continually goes [c]forth weeping,
Bearing [d]seed for sowing,
Shall doubtless come again [e]with rejoicing,
Bringing his sheaves with him.
I want to share how I processed this healing in my life. There may be some people who are ready to make this change! Some of you may be in the beginning of this journey and it’s not time yet. However, if you are ready, here are some ideas that can begin you on this journey of freedom.
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- Accept the fact that you are coming into agreement with familiar spirits of grief and sorrow. Every time you feel the familiar spirits come to you, you do not send them away. It could be a familiar song, (mine was “I can’t understand, all that You’ve allowed, I just can’t see the reason)a familiar feeling that overtakes you, a person, a location (for me it was the cemetery), someone saying something unkind…let Holy Spirit show you the places and circumstances that these familiar spirits would come to you. Maybe it starts with a thought and you spiral into darkness and can’t get out.
- Repent to God. Turn from this practice. Every time you begin to have dark thoughts.
- God, forgive me for continuing to come into agreement with grief and sorrow (and anything else that comes along with them. Depression, loneliness, isolation, anger, resentment, bitterness, death, suicide…these will come to you as you begin this prayer)
- Command them to go! In the name of Jesus – In the name of Jesus I command grief, sorrow, anger, resentment, bitterness, death, suicide to go!
- Thank God for His goodness and for what a good Father He is. And that He can take what was meant for evil and use it for good!
- Receive what God has for you.
- Lord, I receive freedom, joy, peace, friendship, new thoughts of His goodness. Focus on what a good God He is…and again Holy Spirit will guide you into what God has for you! Receive it all!
Yes, it will try to come back again, but now you are ready. You command those unwelcome thoughts to go! And go to the word and replace them with good thoughts.
Your life can be full of joy again. And every time someone gets saved or healed because of my journey with the Lord, I look up and thank God for Lexie’s life and know that He is using me in my healed brokenness to bring the Kingdom of God wherever I set foot. And that’s good news.