Zion's Story!

In 2020, I was supposed to get a hysterectomy. Then COVID hit and that never happened. To everyone’s shock I got pregnant that summer. Pregnancy has never been kind to me, and I lost that child. At the time, we had an 11 year old that prayed and prayed for a sibling. We thought it wasn’t in the cards for our family. After losing that child, the doctors told me that it was a fluke and it would be impossible for me to have a baby unless we wanted to proceed with IVF.  We declined.  

After this visit, one night I woke out of my sleep singing the song "Zion". The words are… 

🎵 Zion is calling me to a higher place of praise  To stand upon the mountain and to magnify his name.  To tell all the people of every nation that he reigns.  Zion is calling me to a higher place of praise. 🎵  

Since this is not something I normally do, I got up and prayed about what that meant. The Lord spoke to me and said I’m going to give you a son, you will call him Zion, he will teach you about praise and that his story would reach nations.  I told my husband this the next morning as we were having coffee. We both laughed because we were told that was impossible just a week earlier. 

I found out I was pregnant in October a few weeks after this dream. All was going perfectly. It’s EASY to praise then! We heard a heartbeat at 6 weeks and everything looked good. Because of our ages (38 Bobbi  and 48 Josh at the time), we were sent to a specialist. On Dec 10th 2020 we had that visit. 

Nothing was out of the ordinary that day.  They did an ultrasound and came in to tell us they thought our baby had Down syndrome.  They thought this because of a large nuchal fold and not seeing a nasal bone on the ultrasound…which are markers for Down syndrome. We opted for an NIPT (non invasive pregnancy test - basically blood work) and it came by 99.3% chance of him having Down syndrome. We were encouraged to abort, but that was not an option to us. They also confirmed it was a boy (remember the Lord said He will give us a son and you will call HIM Zion).   

We were scared not really knowing what all of the info we were given meant. But we kept going back to God’s word about praise. Fast forward to the 20 week anatomy scan. We got the news that Zion had a complete AV Canal heart defect. No parent wants the news that something is wrong with their baby’s heart. Even thought it was a stressful pregnancy we kept going back to God’s word, praising Him in the good news and the bad news.  We were believing God for a miracle. 

Zion was born June 15, 2021. We ended up in NICU for 40 days. We covered his walls in scriptures and we asked people to pray. We were overwhelmed by the response. This is where Zion’s Army started. We were surrounded by prayer warriors. It held us up during this stressful time. 

We were able to go home for 5 weeks before Zion’s open heart surgery. Josiah got to meet his brother he prayed for and our parents were able to meet him as well.  He was so loved by us and people all over. Zions open heart surgery was scheduled for Sept 20th. At pre-op we were told this was a common thing that happens with those that have Down syndrome and we would be home in no time. 

On Sept 20th, Zion went in for open heart surgery to fix his AV canal defect. We received updates all day that everything was going as planned.  When he was coming out of surgery, his heart went out of rhythm and into cardiac arrest. They had to shock his heart multiple times. He came out of surgery on ECMO life support with his chest open. It was excruciating seeing our son like this.

Zion ended up having 5 open heart surgeries in a matter of 12 days. He would come out of sedation with his hand up toward Jesus! This baby was teaching the world about praise. Here he’s been though what most adults couldn’t survive and yet each time it was like he had a message for the world...to praise Jesus!   

It came down to Zion needing a heart transplant. We had 3 options. We were told the qualifications were that his other organs had to be working to get accepted for a transplant…which they were. They even did a brain scan and showed he had brain activity and no brain bleeding or clots. He was still denied by all 3 places. We had no other options.  Zion was maxed out with medications they could give him to keep him comfortable. We didn’t want him to suffer.  At that point we made the gut wrenching decision to remove the machines. 

We all held Zion one last time.  We were hysterical and crying knowing this would be the last time we held our son.  As Josiah, held his brother for the last time, he raised his hand and thanked God for giving him a brother.  He shifted the atmosphere.  We thanked God for Zion's life and what he had taught us in 3 months, 3 weeks and 3 days on earth. He passed on October 8, 2021 at 5:07pm with us praising God for Zion's life.  He left my arms and entered the arms of Jesus. The sky literally erupted as Zion took his last breath.  It was the hardest rain I had ever heard came pouring down. Everyone who was in that room could feel God was there. I can only imagine how heaven was rejoicing 🕊 

Zion taught us that in good times and in bad times that God is God no matter what! He is truly worthy of our praise! The Lord gives and the Lord takes away.  Blessed be the name of the Lord! 

When planning Zion’s Celebration of Life we asked where our prayer warriors were from. We started charting it. Zion touched lives in all 50 states and in 49 countries.  Talk about nations!  God truly fulfilled what He spoke to me that night through that song. 

Zion’s Army started when we were in the NICU and people started praying. We called you all Zion’s Army but didn’t start a page until Zion was 2 open heart surgeries in. We couldn’t keep up with the updates and had so many people all over the world messaging us. We saw the hand of God during that time and felt your prayers. You held us up! We knew we had an army of warriors backing us. Hence the name Zion’s Army. Fun fact: We didn’t realize until recently it sounds like Zion Sarmy as his name is Zion Sarmiento 😊 That was not why we called it that, but we think it’s really cool now 😎  

Zion is our son but YOU are Zion’s Army!  We will continue to share Zion’s story. We will CELEBRATE LIFE!  We will HONOR CHILD LOSS!  We are forever DOWN SYNDROME ADVOCATES!  And we want to make change by helping CHD RESEARCH happen!

We are so thankful for this little boy we were blessed to be parents to. It has not been an easy journey but Zion has taught us so many lessons. We have loved sharing him with all of you. We wish our circumstances were different but we hope to make him proud. It’s what he taught us on earth that is the wind in our sails! We pray everyday that God directs our steps and gives us beauty for our brokenness (Isaiah 61:3).  We love you our sweet boy 💙 #zionsarmy