It was 5 years ago this week that a phone call changed our lives forever. I have rarely talked about the events of Evan's prenatal diagnosis in public. However, the Lord led me to write this several months ago. I thought it would be used in some sort of public speaking opportunity, but it seems as if He wants me to share it here and now. This is longer than a normal post, and I hope you will stay with me as I split my heart wide open and share with you a part of the ongoing grief process that I experience nearly every day. While there is grief, there is still much joy because Evan is God's precious creation. I have just spent 3 days stuck at home with both of my children due to snow, and even during that confinement, I had wonderful times with Evan as he laughed his head off at me and his brother. He is all joy, and that is his gift to all of us. So here it goes...
Matthew 8:23-27 says:
Then he got into the boat and his disciples followed him. Suddenly a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. The disciples went and woke him, saying, “Lord, save us! We’re going to drown!” He replied, “You of little faith, why are you so afraid?” Then he got up and rebuked the winds and the waves, and it was completely calm. The men were amazed and asked, “What kind of man is this? Even the winds and the waves obey him!”
Just before this account in Matthew, Jesus had told the crowds what it would take to follow Him. It would not be an easy life. He told them, “Foxes have dens and birds have nests, but the Son of Man has no place to lay his head.” (v. 20) Then He said, “Follow me, and let the dead bury their own dead.” (v.22) He was saying to the crowds that when they made the decision to follow Him it’s not all about the show. You see, they had just seen Him do miracles, and they were after more. Jesus was reminding them of reality that we all know too well – discipleship is about laying down our very life and taking up our crosses daily. I’m sure that’s not what they expected to hear.
Nor were the disciples expecting to get on a boat with Jesus and a storm come up. If you notice, v. 24 says the storm came up suddenly. It was without warning. They were not expecting it. In that day, there was no Weather Channel app. There was no warning system of any kind. I’m sure if there had been, they would have never set foot on the boat. Being on a boat in the kind of storm the Bible is describing here could be very dangerous.
It is like that in our storms of life, too. We are seldom ever expecting a storm. We’re not prepared. There is no warning system for those either. It was either late December 2011 or early January 2012 when I told Stewart one day, “I think the Lord is telling me it’s time to have another baby, and I’m not excited about it.” Now why would I not be excited about that? Babies are a great blessing, right? I had been quoted in recent months before this conversation as saying we were not having any more children. Our oldest, Zachary, had just turned 3, and he was a handful. I mean a HANDFUL. He was giving us a run for our money! Even though we had been at our church about 3.5 years and had more staff, Stewart was still working almost every night. I didn’t need another baby to have to spend 24/7 with. There were financial concerns. There were space concerns with our house. Yet Stewart answered every single concern. But the big question remained: Would we be able to get pregnant at all? We were not supposed to have children in the first place. Would it even been possible?
I kept trying to put off trying for another baby. I cited a trip we had coming that summer as an excuse. But God would not let me keep making excuses. Eight months after we started trying, we were expecting again. And we were thrilled. Then we found out it was another boy, and Stewart was thrilled because we wouldn’t have to buy as much stuff.
Then a couple of weeks after my 20 week sonogram, the storm came.
One blood test came back a little off. However, I was told by many not to put stock in that test because it was often wrong. Then the definitive answer came in the form of a phone call on a Tuesday about lunch time from my OBGYN specialist: There was a 99.1% chance our baby boy had Down’s Syndrome.
Suddenly, the waves were sweeping over us, and we thought we were going to drown.
We prayed. Oh how we prayed. We felt as if the Lord was leading us to pray for our baby boy’s healing. So we started that first day, praying for that .9%. That somehow the test would be wrong. Somehow he would be alright. Somehow this was all a bad dream. We believed God for it. But on the day he was born, Stewart said when he saw Evan for the first time, he didn’t know what to say to me because he knew Evan had been born with Down’s. We spent 5 weeks in the NICU. Evan had surgery at 3 weeks old.
“Jesus, are You sleeping?”
“Lord, save us! We are going to drown!”
Have you ever felt that way? You are going through a storm of life. The wind and the waves are sweeping over you, and you think you’re going down. You keep asking, “Lord, where are You? Because I don’t think You’re anywhere around here? Have You seen me here? Have You even noticed? I am going to die!”
I felt that way. I still feel that way. Like most people you may know with same disability, we have not had an easy road with Down’s. Evan never learned to suck a bottle. When he was born, he was aspirating on his feedings rather than them going in his stomach, so a feeding tube was inserted when he was 3 weeks old. Because of that, it took him a lot longer to learn to eat and drink because he never learned the sucking motion that is foundational for normal feeding. In the summer of 2015, we found out he had epilepsy. He has been having seizures for quite some time now. We believe that has held us his speech and motor skills. He is way behind where he should be. And it is heartbreaking. We have friends that have boys just a couple of months older than him, and they are walking, talking, eating machines, and it breaks my heart every time their moms talk about them and brag on what they are doing. My bragging sessions for Evan are few and far between. It hurts so deeply and leaves a loneliness in me that I cannot even begin to describe. I find myself often asking,
“Jesus, are You sleeping?” “Lord, save me! I am going to drown!”
All through this journey – even when I first found out I was pregnant with Evan – the Lord has said one thing to me over and over again – FEAR NOT. He said it to the disciples in this passage: “’You of little faith, why are you so afraid?’” Why are we so afraid? In Luke 8, where the parallel passage of this same account is found, Luke says that Jesus said, “Where is your faith?” Why do we fear? We may need to look at where our faith is placed.
I had coffee one afternoon with another minister’s wife and she commented that it seemed that most of those in the ministry have some sort of “thorn in the flesh.” There is some sort of issue in those families that continually plagues them and continually plagues their faith. Why would God do that? Why would He hurt those who serve Him faithfully? I think it’s as 1 Peter says – He is testing the genuineness of our faith (1 Peter 1:6-7). We say our faith is in Jesus, but are we living it? Do we believe it? Have we allowed the wind and waves around us to tell us that He is asleep and He is not going to wake up for us? The first Psalm I ever learned was 121, and it says, “He will not let your foot slip— he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep.” (v.3-4)
Jesus may have been taking a “power nap” in the hull of that boat, but I can tell you. He knew EXACTLY what was going to happen and that the storm was going to come. It did not take Him by surprise. Actually, He was the one who made the wind and the waves! Colossians 1 says all things have been created through Him and for Him. He is before all things, and in Him all things hold together. (v.16-17) So all of that water and wind was His to command. The situation around you is His to command. Your circumstances are not your god. God is God. There is no other. He has no peer. (Isaiah 45:5, NET) We cannot put our faith in what is happening around us. It is not the whole picture.
The day after we found out about Evan’s diagnosis was a Wednesday. I should have been at church, but I was in no shape to be around people. We had only told a select few that anything was wrong with the baby, and I really did not want to face anyone yet. I was sitting on the couch, watching “Wheel of Fortune.” Mindless. It came on after the news, and I didn’t have the energy to change the channel. As I am sitting there staring at the screen, half listening, in a deep pit of despair, I hear one of the contestants introduce himself. He rattled off his name, his wife’s name, his daughter’s name, and then he said, “And I have a son named Evan.” For some reason, I heard that part. Evan. I liked that name. I’ve always liked that name. I grabbed my phone and quickly typed “Evan” into the open website in my explorer – a baby name database. The results came up as this:
“Then he got up and rebuked the winds and the waves, and it was completely calm.”
The parallel passage in Mark 4 says that Jesus said to the storm, “Quiet! Be still!” All He is doing it waiting for us to put our faith in Him and fear not, then He will calm the storm. Will the storm be over? Maybe so. Maybe not. Our storm is not over. I don’t know that it will ever be. But if we choose to trust Him, it will be calmer all around us. The end of the passage says, “The men were amazed and asked, ‘What kind of man is this? Even the winds and the waves obey him!’” We don’t know the end of the story for Evan, but we want his life to point to the One whom even the wind and waves obey. That’s all I know to do. Even when we are scared to death, we put our faith in Him because He has continually said “Do not fear.” He is Lord over the storms, and He is Lord over whatever my situation is.
Matthew 8:23-27 says:
Then he got into the boat and his disciples followed him. Suddenly a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. The disciples went and woke him, saying, “Lord, save us! We’re going to drown!” He replied, “You of little faith, why are you so afraid?” Then he got up and rebuked the winds and the waves, and it was completely calm. The men were amazed and asked, “What kind of man is this? Even the winds and the waves obey him!”
Just before this account in Matthew, Jesus had told the crowds what it would take to follow Him. It would not be an easy life. He told them, “Foxes have dens and birds have nests, but the Son of Man has no place to lay his head.” (v. 20) Then He said, “Follow me, and let the dead bury their own dead.” (v.22) He was saying to the crowds that when they made the decision to follow Him it’s not all about the show. You see, they had just seen Him do miracles, and they were after more. Jesus was reminding them of reality that we all know too well – discipleship is about laying down our very life and taking up our crosses daily. I’m sure that’s not what they expected to hear.
Nor were the disciples expecting to get on a boat with Jesus and a storm come up. If you notice, v. 24 says the storm came up suddenly. It was without warning. They were not expecting it. In that day, there was no Weather Channel app. There was no warning system of any kind. I’m sure if there had been, they would have never set foot on the boat. Being on a boat in the kind of storm the Bible is describing here could be very dangerous.
It is like that in our storms of life, too. We are seldom ever expecting a storm. We’re not prepared. There is no warning system for those either. It was either late December 2011 or early January 2012 when I told Stewart one day, “I think the Lord is telling me it’s time to have another baby, and I’m not excited about it.” Now why would I not be excited about that? Babies are a great blessing, right? I had been quoted in recent months before this conversation as saying we were not having any more children. Our oldest, Zachary, had just turned 3, and he was a handful. I mean a HANDFUL. He was giving us a run for our money! Even though we had been at our church about 3.5 years and had more staff, Stewart was still working almost every night. I didn’t need another baby to have to spend 24/7 with. There were financial concerns. There were space concerns with our house. Yet Stewart answered every single concern. But the big question remained: Would we be able to get pregnant at all? We were not supposed to have children in the first place. Would it even been possible?
I kept trying to put off trying for another baby. I cited a trip we had coming that summer as an excuse. But God would not let me keep making excuses. Eight months after we started trying, we were expecting again. And we were thrilled. Then we found out it was another boy, and Stewart was thrilled because we wouldn’t have to buy as much stuff.
Then a couple of weeks after my 20 week sonogram, the storm came.
One blood test came back a little off. However, I was told by many not to put stock in that test because it was often wrong. Then the definitive answer came in the form of a phone call on a Tuesday about lunch time from my OBGYN specialist: There was a 99.1% chance our baby boy had Down’s Syndrome.
Suddenly, the waves were sweeping over us, and we thought we were going to drown.
We prayed. Oh how we prayed. We felt as if the Lord was leading us to pray for our baby boy’s healing. So we started that first day, praying for that .9%. That somehow the test would be wrong. Somehow he would be alright. Somehow this was all a bad dream. We believed God for it. But on the day he was born, Stewart said when he saw Evan for the first time, he didn’t know what to say to me because he knew Evan had been born with Down’s. We spent 5 weeks in the NICU. Evan had surgery at 3 weeks old.
“Jesus, are You sleeping?”
“Lord, save us! We are going to drown!”
Have you ever felt that way? You are going through a storm of life. The wind and the waves are sweeping over you, and you think you’re going down. You keep asking, “Lord, where are You? Because I don’t think You’re anywhere around here? Have You seen me here? Have You even noticed? I am going to die!”
I felt that way. I still feel that way. Like most people you may know with same disability, we have not had an easy road with Down’s. Evan never learned to suck a bottle. When he was born, he was aspirating on his feedings rather than them going in his stomach, so a feeding tube was inserted when he was 3 weeks old. Because of that, it took him a lot longer to learn to eat and drink because he never learned the sucking motion that is foundational for normal feeding. In the summer of 2015, we found out he had epilepsy. He has been having seizures for quite some time now. We believe that has held us his speech and motor skills. He is way behind where he should be. And it is heartbreaking. We have friends that have boys just a couple of months older than him, and they are walking, talking, eating machines, and it breaks my heart every time their moms talk about them and brag on what they are doing. My bragging sessions for Evan are few and far between. It hurts so deeply and leaves a loneliness in me that I cannot even begin to describe. I find myself often asking,
“Jesus, are You sleeping?” “Lord, save me! I am going to drown!”
All through this journey – even when I first found out I was pregnant with Evan – the Lord has said one thing to me over and over again – FEAR NOT. He said it to the disciples in this passage: “’You of little faith, why are you so afraid?’” Why are we so afraid? In Luke 8, where the parallel passage of this same account is found, Luke says that Jesus said, “Where is your faith?” Why do we fear? We may need to look at where our faith is placed.
I had coffee one afternoon with another minister’s wife and she commented that it seemed that most of those in the ministry have some sort of “thorn in the flesh.” There is some sort of issue in those families that continually plagues them and continually plagues their faith. Why would God do that? Why would He hurt those who serve Him faithfully? I think it’s as 1 Peter says – He is testing the genuineness of our faith (1 Peter 1:6-7). We say our faith is in Jesus, but are we living it? Do we believe it? Have we allowed the wind and waves around us to tell us that He is asleep and He is not going to wake up for us? The first Psalm I ever learned was 121, and it says, “He will not let your foot slip— he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep.” (v.3-4)
Jesus may have been taking a “power nap” in the hull of that boat, but I can tell you. He knew EXACTLY what was going to happen and that the storm was going to come. It did not take Him by surprise. Actually, He was the one who made the wind and the waves! Colossians 1 says all things have been created through Him and for Him. He is before all things, and in Him all things hold together. (v.16-17) So all of that water and wind was His to command. The situation around you is His to command. Your circumstances are not your god. God is God. There is no other. He has no peer. (Isaiah 45:5, NET) We cannot put our faith in what is happening around us. It is not the whole picture.
The day after we found out about Evan’s diagnosis was a Wednesday. I should have been at church, but I was in no shape to be around people. We had only told a select few that anything was wrong with the baby, and I really did not want to face anyone yet. I was sitting on the couch, watching “Wheel of Fortune.” Mindless. It came on after the news, and I didn’t have the energy to change the channel. As I am sitting there staring at the screen, half listening, in a deep pit of despair, I hear one of the contestants introduce himself. He rattled off his name, his wife’s name, his daughter’s name, and then he said, “And I have a son named Evan.” For some reason, I heard that part. Evan. I liked that name. I’ve always liked that name. I grabbed my phone and quickly typed “Evan” into the open website in my explorer – a baby name database. The results came up as this:
The meaning of the name Evan is God Is Good.
What?
God is good.
“Then he got up and rebuked the winds and the waves, and it was completely calm.”
The parallel passage in Mark 4 says that Jesus said to the storm, “Quiet! Be still!” All He is doing it waiting for us to put our faith in Him and fear not, then He will calm the storm. Will the storm be over? Maybe so. Maybe not. Our storm is not over. I don’t know that it will ever be. But if we choose to trust Him, it will be calmer all around us. The end of the passage says, “The men were amazed and asked, ‘What kind of man is this? Even the winds and the waves obey him!’” We don’t know the end of the story for Evan, but we want his life to point to the One whom even the wind and waves obey. That’s all I know to do. Even when we are scared to death, we put our faith in Him because He has continually said “Do not fear.” He is Lord over the storms, and He is Lord over whatever my situation is.
Rebecca, prayers always for Stewart, you, Zach and Evan! You are a gifted writer!
ReplyDeleteWe will keep praying for sweet Evan that the seizures stop for good.🙏🏻 ...that the storms will calm!🙏🏻