In August of 2013, I was pregnant with our 5th child. Having all boys, we were excited for our 20 week ultrasound to reveal the gender of baby #5. My husband and I were anticipating another boy with jokes of how to begin training our basketball team and feed a tribe of teenagers. But instead of just hearing the good news of another healthy baby, our enthusiasm was quieted by the troubled look on the doctors face. We were told our baby was measuring 2 weeks small, and we would need a level 2 ultrasound to see if there were any other concerns for the health of our baby.
After additional testing and anxiously waiting, we were given news that every parent fears. Our son was diagnosed with a fatal genetic disorder. Results showed our son had Trisomy 18, a genetic disorder doctors say is “incompatible with life”.
As you can imagine, our world came crashing down.
Doctors gave us very little hope, because the statistics showed most babies with Trisomy 18 are lost in the 2nd or 3rd trimester of pregnancy. They say fifty percent of babies who are carried to term will be stillborn, boys having a higher stillbirth rate than baby girls. And if our baby would survive labor, he would most likely only live a few hours. Even at that, only 10% of babies with Trisomy 18 live until their 1st birthday. I began to see specialists twice a week, an hour drive there, about three hours with two or three specialists, cardiologists, neonatologists, social workers, and grievance counselors. We were exhausted physically and mentally. We were asked countless times if we wanted to terminate the pregnancy. If this was just too much, too hard, because of the unknown. Every appointment we prayed the doctors would have something hopeful to say, maybe a miracle, but always the same, no certainty how long our baby would be with us.
My mind raced through the future, forwards and backwards. I was crippled with fear. Most days my eyes were swollen shut and my face stained with tears. The unknown tormented my thoughts resulting in many sleepless nights. I remember the day I turned to my husband and said, “I want to give our son a name. I don’t know if these are his only days and I want him to know a mom who loves him, a family who loves him.” We chose to name our son Zion. We knew this child was deeply loved by God. And he has a name. And God makes no mistakes, no matter the diagnosis. It was that day we made a choice. Without knowing the future or what may happen with our son, we chose that no matter what, God would be glorified through this little life. No matter how difficult the road ahead, we would trust that God was in control and His love would carry us.
January 11, 2014, Zion Isaiah was born. It’s hard to describe how the scariest moment of my life, was also the most beautiful. We instantly fell in love with our 4lb 7oz little miracle. Immediately family and friends flooded our room to celebrate with us, our boys thrilled to wrap their arms around their baby brother. In this moment, my world stood still. And in this moment, my questions and doubts and fears disappeared, because of love. God’s love was overwhelming. I just marveled at the beauty of my peaceful little boy. Everyone who met him, saw God’s beauty and knew His love.
Zion began beating the odds, one step at a time, and we brought our little miracle home. For 10 days, we were given the most amazing gift and God filled those 10 days with more love than I have ever known. Each day was lived with purpose and every day mattered. Zion was a gift. A gift of love, a gift of hope. And we celebrated our little champion. On day 10, by far the hardest day of my life, Jesus took our Zion home. He was perfect and peaceful after taking his last breath, but my heart shattered into pieces. I didn’t know how to let him go or how to live without him. I experienced the darkest days I have ever known. But even in my darkest moments, God’s love rescued me and He began to shine a glimmer of hope. A little life who entered the world, was given very little hope, and hope is the very thing he brought with him.
There’s a passage in the Bible that has been written on my heart for many years: “We have this hope as an anchor for the soul…” (Hebrews 6:19). This hope is where we found the strength to carry on. Remembering the truth of God’s word and how my doubts and fears did not change His love. And knowing this life here is not the end, but fixing our eyes on what is eternal. God has given us the most amazing family and church and friends who have walked alongside us, supported us, and prayed throughout this unthinkable journey.
If I’m being completely honest, there have been many days I have wished this was not my story. This has been the most painful thing I have ever been through, and I still feel like some days my wounds are really raw. Not a day goes by that I don’t wonder what life would be like if he were still here with me.
But I am always reminded, this is my story.
And if I’m willing to let God use it, then look what He can do.
As we began sharing Zion’s story, suddenly it started spreading through social media, mom networks, and eventually, national news. His story was told in over 150 countries, translated in over 10 languages, and our tribute video was viewed by almost 4 million people. We were overwhelmed with love from family, friends, and strangers, even across the world. Countless people were sharing stories with me of their own journey and how Zion’s life has impacted them.
Which brings us here today.
You see, God has a plan. For my story, and for your story. If we choose to glorify Him through it all… there’s so much He can do.
The journey was long. My heart was broken. My body was weary. But my soul was anchored.
Anchored in hope.