503 days :-)

Those were the number of days written in the Lamb’s book of life for Zion John Coutouzis. 503 glorious days.

Zion has had three colds in his little lifetime, including this recent episode. We knew that he would have some hard moments during his recovery, but never could I have imagined that this particular cold virus would take his life. The events that transpired the days leading up to his passing revealed how truly fragile Zion was in the face of a virus, at this point of his disease progression.

I was strangely excited to finally get to care for Zion at home when he was sick. Only a parent can understand how hard it is to not be able to care for your child who isn’t feeling well. That was one the hardest parts of Zion’s year-long hospital journey. I felt so eager to get to finally be his nurse (alongside our home nurse of course) during Zion’s first sickness at home by tending to all of his needs quickly – I felt like God truly had prepared me for a time such as this. But, within a couple days he was already showing us that this cold was going to be different. This time, any sort of stressful trigger was causing him to “clamp down” in his blood vessels, sending his fragile little body into crises where we couldn’t get his oxygen up no matter what we did. So early Wednesday morning we called the ambulance to take him and I into the hospital. Lord knows I didn’t want to go back there. But we knew it was best for Zi.

We got there just in time because his crisis episodes seemed to get worse with each one. However when he wasn’t having a bad event, he seemed to be his normal self just trying to get over an illness. George and I remained by his sides, taking turns spending a couple days (and nights) at a time at the hospital. When at home, the first thing we both noticed was how quiet it was with Zion being gone and his machines turned off. We both wondered if, during this time of having Zion under the hospital’s care for an unforeseen amount of time, maybe God was giving us a chance to hit the RESET button in many areas of our lives?

On Sunday, at 9AM, George called to tell me to pray because Zion was coding and he was being given chest compressions. My daughter (Eden) and I started praying immediately and then the kids and I hurried to the hospital. What I saw when we arrived was hard to see. My little sweetheart was in a bad place. I learned that it took about 12 minutes of chest compressions to bring Zion back, but he wasn’t truly “back”. He was doing this strange, repetitive behavior where his arms would go rigid and his eyes would go wide open, and then he would close them and relax – what appeared to be like seizure activity. Throughout the day his body showed us that what had happened was a huge blow, as his blood pressures and oxygen sats kept dropping, despite the blood pressure medications he was being given. As they told us his staggering lab values post cardiac arrest (numbers that were so high it made my mouth drop), I asked the docs to look back at his lab values after the cardiac arrest he had when he was younger. After a few minutes of digging into his chart, we realized that this event was much, much worse. So the familiar conversations began about how far we wanted to go to attempt to save Zion’s life.

But we continued to be hopeful and pray, while asking many to intercede in prayer as well. It seemed like an eternity to get the EEG fully hooked up to Zion’s head because the tech had to pause and come back later due to Zion’s unstable vital signs. The EEG was what would tell us if his brain activity was normal and if he was having seizures. In the meantime, I asked them to slightly turn down some of the pain med IV drips he was getting to keep him comfortable, just in order to see if Zion was able to communicate with us. After a short amount of time, I started talking to him closely in his ear. And he began to make his little grunting sounds (which is how he answers me when I talk to him). It seemed like a little glimmer of hope – so we couldn’t give up on him yet.

It wasn’t until the evening that the neuro team finally reported that what we had been witnessing were in fact seizures. By this time in the evening Zion was now having more blatant clinical seizure activity, where all of his limbs would go rigid and he would make grunting sounds. We felt so helpless seeing this and wanted the seizures to stop, so we started asking for seizure meds to be initiated. A possible side effect of the seizure med was to lower blood pressure though, which was a risk for Zion in his current state. However, we felt the seizures were a greater risk to his brain, so we asked them to proceed. When the doctor pushed the med through his line, that was it. His life simply faded before our eyes around 9:30pm. His little heart, that always pounded out of his little chest, stopped beating. We just seemed to unanimously agree not to do anymore interventions because we had peace that God had called Zion home despite our efforts. But it was really hard to process everything because it all happened so fast. We want to comfort all of you who love Zion though by informing you that Zion went to Heaven peacefully.

We spent time crying and holding our Zion, completely free from the wires always attached to him and the circuit that always tethered him to his ventilator. We had some beautiful memory pieces made that we can always look upon and cherish. We removed all the EEG leads from his head and washed his body with the help of our bedside nurse. My husband lead a prayer over Zion with myself, the nurse and the chaplain standing by. They put his lifeless little body in a shroud, and wrapped that in a blanket. I then got the honor of walking his body as far as they would allow me to go towards the hospital’s morgue. When we had to part ways with them, and I handed Zion over to the nurse, watching those elevator doors shut was the hardest thing my heart has ever endured. But we needed to do that entire process to find closure. I had to ensure his body was treated with dignity and respect during the entire process of preparing him. He was our prince, our brave warrior, and I wanted to ensure he was treated that way to the very end.

It truly feels surreal to lose a loved one, as the shock takes time to wear off. In Zion’s final moments of life, I kept kissing and holding his body and rubbing it because I knew I would not get that feeling in my hands ever again while on this Earth. But my husband and I made a pledge to keep our focus on the spirit realm. This means that we choose to have joy in the fact that our son didn’t truly die. He simply crossed over. He crossed from this temporal life into eternal life. He is completely healed now. Free from pain. Free from heart and brain defects. Free from wires. Free from the circuit and the ventilator. He’s completely whole with his Creator. That thought evokes so much praise and worship. We choose to remain fixated on that, as opposed to dwelling on all the “what ifs”.

God’s word has kept us standing and persevering in this journey, and as Zion’s chapter closes, God’s word is what will continue to carry us through as we heal. The following scriptures are what we are resting in:

But I do not want you to be ignorant, brethren, concerning those who have fallen asleep, lest you sorrow as others who have no hope. For if we believe that Jesus died and rose again, even so God will bring with Him those who sleep in Jesus.

For this we say to you by the word of the Lord, that we who are alive and remain until the coming of the Lord will by no means precede those who are asleep. For the Lord Himself will descend from heaven with a shout, with the voice of an archangel, and with the trumpet of God. And the dead in Christ will rise first. Then we who are alive and remain shall be caught up together with them in the clouds to meet the Lord in the air. And thus we shall always be with the Lord. Therefore comfort one another with these words.

1 Thessalonians 4:13-18

Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. 17 For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, 18 while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal.

2 Corinthians 4:16-18

For to me, to live is Christ, and to die is gain.

Philippians 1:21

And we know that all things work together for good to those who love God, to those who are the called according to His purpose.

Romans 8:28

For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand that we should walk in them.

Ephesians 2:10

For our citizenship is in heaven, from which we also eagerly wait for the Savior, the Lord Jesus Christ, 21 who will transform our lowly body that it may be conformed to His glorious body, according to the working by which He is able even to subdue all things to Himself.

Philippians 3:20-21

For You formed my inward parts;

You covered me in my mother’s womb.

14 I will praise You, for I am fearfully and wonderfully made;

Marvelous are Your works,

And that my soul knows very well.

15 My frame was not hidden from You,

When I was made in secret,

And skillfully wrought in the lowest parts of the earth.

16 Your eyes saw my substance, being yet unformed.

And in Your book they all were written,

The days fashioned for me,

When as yet there were none of them.

Psalm 139:13-16

Ecclesiastes 3 explains that: To everything there is a season,
A time for every purpose under heaven:

2 A time to be born,
And a time to die;
A time to plant,
And a time to pluck what is planted;
3 A time to kill,
And a time to heal;
A time to break down,
And a time to build up;
4 A time to weep,
And a time to laugh;
A time to mourn,
And a time to dance;
5 A time to cast away stones,
And a time to gather stones;
A time to embrace,
And a time to refrain from embracing;
6 A time to gain,
And a time to lose;
A time to keep,
And a time to throw away;
7 A time to tear,
And a time to sew;
A time to keep silence,
And a time to speak;
8 A time to love,
And a time to hate;
A time of war,
And a time of peace.

We have been incredibly blessed to see how many have been encouraged by reading this little blog! Some have been encouraged to start praying, others to pray more. Some have been convicted to deepen their faith in God, while others have decided to start reading the Bible. God has truly done exceedingly and abundantly more than we could have asked or thought! I set out at the beginning of this journey to purpose my heart and mind to see the love of God as we moved forward in faith into the unknown. He showed Himself true in so many ways. And I’m so blessed that what we have witnessed has encouraged others. We truly hope this blog emboldens others to begin sharing their own testimonies of God’s goodness to a dying world that is desperate for hope.

Speaking of HOPE, the reason for the hope we have is because of our faith in Jesus Christ. When I put my trust in Christ’s work on the cross to atone for my sins back in 2012, I truly became a new creation from that point on. We believe that God is pure and good in all His ways (even if we don’t understand them). We accept that as mere human beings, God’s creatures, many things in this life are not for us to understand. We believe that God is sovereign, which means He orchestrates everything on earth according to “the pleasure of His goodwill.” We believe that God often appoints trials for His children in order to shape their character to become more like Christ. We believe the most important thing we can do in this lifetime is to know God and to glorify His name, and to teach our children to do the same. The Bible reveals that, “If we confess our sins, He is faithful and just to forgive us our sins and to cleanse us from all unrighteousness.” (1 John 1:9) We believe Jesus will return again, coming in the clouds, to judge both the living and the dead – and those who trust in Him, whose sins are forgiven, will spend eternity in Heaven with God. We also don’t grieve as the world grieves, because our hope is in Christ. So while we have moments of sadness and tears (which my Heavenly Father collects in His bottle), we can’t help but shift our minds back to rejoicing that Zion is alive right now with God! Wow! We know we will see Zion again when we join him in Heaven, entering eternity – so this goodbye is not forever. We believe little Zion was known by God even before he was created, and he was given a ministry from God which was bigger than we could have ever imagined. Those truths are what keep us standing and keep us moving forward, despite how hard it is to lose the most precious gift we have ever been given.

We thank everyone for following Zion’s journey. We thank God that Zion got to finally experience Heaven on earth – which was living at home with his family for almost five months. Have peace knowing that Zion is fully healed with Jesus in Paradise. We hope this blog encourages others to trust the Lord in the face of fear of the unknown. And may Zion’s brief life on earth, and very unexpected and abrupt departure, be a humbling reminder of the brevity of this life. Today is the day of salvation!” (2 Corinthians 6:2). “Seek the Lord while He may be found, call upon Him while He is near. Let the wicked forsake his way, and the unrighteous man his thoughts; let him return to the Lord, and He will have mercy on him; and to our God, for He will abundantly pardon.” (Isaiah 55:6-7)

Zion’s obituary is at the following link:


Zion was HAPPY! 🙂
Our first and only family photo at home
Our Trisomy 18 warrior

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”

Romans 15:13

9 thoughts on “503 days :-)

  1. So beautifully written, Devon—as with all your posts! You show your heart, revealing your deep love of God, Zion and your family. Your keen Godly discernment of each day or situation helped all of us love Zion too, and to know how to pray for him. Also, God enabled you & George to grasp so much technical medical knowledge to care for Zion. Wow! God clearly enabled you to be the one and only family for Zion. God touched us deeply as He continued to reveal Himself through your writings. It’s no wonder God made you and George Zion’s parents, and your whole family Zion’s family. You let God be God in your lives, as you believed in His truths and grace. Thank you for sharing Zion with all of us who followed Zion. Zion’s life is still a ministry to so many as he is with our Lord. Praise our gracious Father in Heaven and Jesus Christ, our Savior and Lord, forever and ever.

    Liked by 1 person

  2. God is glorified over and over as you present the truth He is revealing through your family—through Zion. He is so worthy of this. I am incredibly grateful for you, Devon, and your translation of circumstances into the story God is telling for all who will hear. My heart is broken for you, with you. My heart has hope, too. May the answers to our prayers strengthen and comfort you all.


  3. From the Singleton family here in Fayetteville… we truly send our condolences. We’ve followed this since Zion was first born. We will continue to pray for y’all during this process. We love y’all and know that our church family is also praying for y’all.


  4. Thank you Devon for this beautiful tribute to Zion and our Lird Jesus Christ. You faith is immense. You were the perfect family for Zion. You remarked that his kisses gave you life. I think you live and devotion gave him a life of love. What a beautiful little angel. Hugs and kisses for your loss. God bless.


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