I have been wanting to start a blog for the past few years, but I always felt like I didn’t have time or content to sustain it. Basically, I was making excuses. I wanted to write about worship, but over the past few weeks the Lord has been leading me to write about something else. Something very personal to my wife, Stephanie and I. Something that is hard to talk about.

But as the days go on, I consistently hear the voice of the Lord reminding me that “my story” isn’t really “my story” but His story and the church’s story. It’s His story because He is the author of my life (Hebrews 12:2). It’s our story because scripture says that we are to bear one another’s burdens (Galatians 6:2). It is our story because we are the family of God – and maybe our story can help someone else through a difficult time.

A few years ago, my wife and I decided to start trying to have kids. We tried for over a year with no luck. After getting set up with a fertility specialist and a few months of testing, we came to understand that the issue was with me. (To spare you all the details we will just say things weren’t working right with me in the fertility department.) We tried a few different things the doctor recommended but nothing worked. In the fall of 2015 we decided to take a break from trying.

The Monday before Christmas, Steph told me there was a surprise in my stocking that she wanted me to open at that moment. So I reached in and pulled out a Superman onesie and a pregnancy test that read “positive.” We laughed and cried and celebrated together. We knew that normally you are supposed to wait till after the first trimester to announce your pregnancy, but we were so excited and wanted our families to celebrate with us. We both thought this was clearly a “Christmas miracle” and nothing bad could happen. I mean, God had healed me and we were going to have a baby! Right? So we told our families, who also laughed and cried and celebrated with us.

Six days later we had a miscarriage.

We wept and cried out to the Lord for weeks. We spent New Year’s Eve alone in our house where the tears flowed off and on. It was the saddest New Year’s we had experienced as a married couple. Though our hearts were sad and needed time to heal (and still do), we rested on His word. We held on to the truth that He is good and faithful and sovereign.

We rested on verses like Romans 8:28-30, 

“And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified.”

We knew that the good He was working in our situation (and all situations) is for us to be more like His Son, Jesus. We held on to Psalm 139 and Revelation 1. We pressed into Him and we didn’t take our eyes off Him.

January of 2016 was a very busy month for us – a song recording, a worship conference, a popular church series and many other things inhabited our busy schedules. But we pressed in and decided to try and have another baby. We got set up with a new specialist who put me on better medication that would help correct the fertility issues I was having.

In March, we got pregnant again. This time the positive pregnancy test was not met with as much excitement as before. We were still working through the loss of our first child and we were fearful of having another miscarriage.

We went to our first ultrasound on May 4th… Yes, national Star Wars day (May the 4th be with you).  I personally felt like the Lord was giving us a sign that our child should be named after a Star Wars character, but Steph wasn’t buying it. We found out that our little bean wasn’t as far along as we had originally thought. We were only 7 weeks pregnant. However, we heard his heartbeat and it took my breath away. We were so excited.

At week 13 of the pregnancy, on June 17th, we went to a place called Ultrasona to find out the gender. They said everything looked good as far as they could tell and that we are having a boy. We had a sweet gender reveal a few days later (which you can watch here if you’d like). 

On Wednesday, July 6th, Steph called me in tears. Saying that her doctor called her and that there might be something wrong with our baby.

After reviewing the ultrasounds from Ultrasona he said they saw something called a Cystic Hygroma on the back of the babies neck. The doctor said he wanted us to see a specialist at St. Ann’s Hospital right away. We had an appointment set up for that Friday.

For three days we prayed and prayed and cried out to the Lord to heal our son. I walked into that appointment with confidence that they wouldn’t find anything. That God had fully healed my son.

They did an ultrasound that seemed to last forever. The doctor said he was concerned because the Nuchal Fold on the back of his neck, where the Cystic Hygroma was, was larger than normal and his long bones in his arms and legs were a few weeks behind in growth. This indicated he might have Down’s Syndrome or some form of Skeletal Dysplasia. It felt like someone took a stack of cinder blocks and laid them on my chest. I couldn’t stop thinking, “God, why didn’t You heal Him? Why didn’t You heal my son!?”

They told us to take the weekend to think about and process everything they had told us. They wanted us to come back the following Monday to do some blood tests and to meet someone who would help us walk through this situation.

“Taking the weekend to process” may work for normal families but when you work in ministry like I do, the weekend is not the best time to be processing what could be life-altering news.

All the joy we had about being pregnant and having a son seemed to be swallowed up by this giant MAYBE. Maybe he is ok, maybe he isn’t…  All the excitement of decorating his room, picking out a name, imagining what it would be like to take my son to the park or on family trips, dreaming with my wife about his possible future and all that God could have in store for him, all that joy and excitement and hope… gone…  fear and doubt and anger took their place.

Monday’s appointment came and went and the news wasn’t any better… actually it was worse. She told us about all the possible horrible scenarios that it MIGHT be. Steph did the blood test that would screen for Down’s Syndrome and two other chromosomal abnormalities. It would take 7-14 business days before we got the results back. The appointment felt so heavy and we left fearful for our son.

It was so hard to see God’s goodness at that moment. The Bible verses that I had held onto back in December brought no comfort. Actually, they made me angry.

Thinking about my understanding of Romans 8:28-30, that the good He works in all situations is for us to be more like His son, frustrated me. I kept thinking, “what a horrible God You would be if You afflicted my son with a disease so that I could become more like Your Son, Jesus.” I was angry and broken. I didn’t want to see things through His eyes. I only wanted what I had envisioned for my son. 

It felt like God had crushed us and hid Himself from us.

That evening my dad stopped by to drop something off. I couldn’t hold back my tears. I bent over and wept. I told him everything that was going on and he hugged us and prayed for us and encouraged us. It was a God moment. I needed to hear the things that he said.

The next day I went into the baby’s room and started to write scripture all over the walls. Verses like,

Romans 15:13 (ESV) — 13 May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.

Hebrews 6:19–20 (ESV) — 19 We have this as a sure and steadfast anchor of the soul, a hope that enters into the inner place behind the curtain, where Jesus has gone as a forerunner on our behalf…

Mark 9:23–24 (ESV) — 23 And Jesus said to him, “ ‘If you can’! All things are possible for one who believes.” Immediately the father of the child cried out and said, “I believe; help my unbelief!”

Mark 5:36 (ESV) — 36 …“Do not fear, only believe.”

I taped our son’s ultrasound pictures to the wall that showed the “abnormalities” so we could pray over him. I created a playlist on my phone and a song called “The Rock Won’t Move” by Vertical Church became the song of my heart.

As I spent time praying and crying out to the Lord, He began to soften my heart. After receiving the news that there might be something seriously wrong with our son I was so mad at God. But within a few days of prayer I found myself clinging to His feet like a child begging to be picked up by His father. I needed His peace. I needed to see His goodness. I needed Him to wrap His arms around me and tell me it was going to be ok. I needed Him to speak into this storm and calm the waves.

As I pursued Him, He revealed Himself to me. A peace and hope began to rise up within me. It then became overwhelmingly clear that I hadn’t surrendered our son’s life over to the Lord. There was a tinge of mistrust after the miscarriage. I didn’t fully trust Him with our son. I didn’t trust Him to do what I considered to be good and right.

For the first time since we found out we were pregnant I prayed to Him and surrendered our son. I surrendered his growth, his development, his purpose, his future, and hardest of all… his life.

On Sunday, July 17th, members of the Lifepoint Staff and some good friends surrounded Steph and I and prayed for us and our son. Their presence and prayers meant more to us than they will ever know. It was life giving.

On Wednesday morning, July 20th, the day of our next ultrasound with the specialist, we got a call with the results from the blood test. They were 99% negative for Down’s, Edwards, and Patau Syndrome. We definitely celebrated and thanked God, but we still had to go back to the specialist that afternoon.

At the appointment, the doctor told us his long bones hadn’t improved in growth and he was now getting concerned with the development of his rib cage. He seems convinced that our son has some form of Skeletal Dysplasia (of which there are over 350 different forms).

If his ribs don’t grow, his lungs can’t develop properly and he will die outside of the womb. They want us to prepare for the worst-case scenario; that he would be stillborn or die shortly after birth. The appointment was hard, but it was different than the first one. I could feel the Lord surrounding us.

On Wednesday, July 27th, we went for, what would have been, our normal 20 week check up had everything been ok. We were looking forward to seeing our son on the ultrasound and hoping for some better news.

We did get to see our little wiggle worm moving around in there and that was joyous. However, the meeting with Steph’s OBGYN was not so joyous. I could tell from the things he said that he didn’t hold much hope for our son. He mentioned that our son’s brain could be damaged because of this disease.

He asked us if we have considered terminating the pregnancy. (Please know that he didn’t push it or insist upon it, he was simply making sure we had been given that option if we wanted it.) But hearing him ask that and the look on his face, as if our son was already gone, was crushing.

We still don’t understand why the Lord is doing this. We can’t see His plan, but we know He has one. He is good and loving and just and righteous. He is faithful even when we are not. He is good even when we can’t see it. He is with us even when we can’t feel Him.

Don’t get me wrong. This is still really hard for us; and the fear, at times, is viciously overwhelming. It’s a struggle to find joy at the moment. However, I am thankful for verses like Philippians 4:4-7 that remind me that rejoicing isn’t always done with a smile, but it’s a heart cry to the Lord that I trust Him.

Philippians 4:4–7 (ESV) — 4 Rejoice in the Lord always; again I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Our next ultrasound is Monday, August 15th.
We appreciate all the prayers we can get.

We will continue to fix our eyes on the Lord and trust in His sovereignty.

2 Chronicles 20:12
“…For we are powerless against this great horde that is coming against us.
We do not know what to do, but our eyes are on you.”

Here is a link to a playlist I created to sing truth over us during this trial.
iTunes playlist: Through The Storm

These are some specific songs that have been great reminders of His goodness and faithfulness, and a source of strength as we go through this storm.