The Heart that Jack Built

Written by Crystal Odom

“Jacket OFF, Mommy!!”

This is what my almost-three-year-old son is yelling at me early this morning on the coldest day of the year as I try my best to balance him, his backpack, cup, lunchbox, my purse and lunchbox, and my ever-growing pregnant belly as we work our way toward the car. Our mornings consist of the indescribably daunting task of getting myself and my toddler ready for school without burning down the house, and then getting both of us and our mountain of stuff into the car without dropping, throwing, losing, or forgetting something of dire importance. At least two or three times during this morning routine I find myself panicking over how on earth I will ever be able to juggle the addition of another precious little soul to our already crazy, fast-paced life. That’s just how our day begins!

There was a time once when I questioned whether I would ever be able to take my son to a public school. Would it be too dangerous for him to be around other kids? Preschool was completely out of the question, or so I thought. My career as a high school teacher, a lifelong dream I had worked hard to achieve, was likely over before it really began. Life for us was going to be different. We had to accept that. And the sooner that we accepted that we were no longer “normal” people, the sooner we would be able to figure out what normal meant for us.

On January 11, 2012, my husband Josh and I welcomed our first little bundle of joy into the world. Weighing a whopping 8 pounds and 8 ounces, our beautiful baby boy was the picture of health. For a few minutes. Then, about 20 minutes into his life, everything changed.

Something was wrong. He was rushed away. He was sick. It was bad. It was his heart. It took a couple of excruciating days to get all of the information and then several more days to reveal whether or not our Jack would need immediate open-heart-surgery.

Sometimes life just changes. You wake up normal and then suddenly, it isn’t what you thought it was going to be. Welcome to the new normal. 

The Heart that Jack BuiltJack fought his way into the world and never stopped fighting. He was diagnosed with a Congenital Heart Disease called Double-Inlet Left Ventricle, among other heart-related problems. DILV goes under the umbrella term of Hypoplastic Right Heart Syndrome. This means he has three working chambers in his heart instead of four. In healthy hearts, there are two pumping chambers called ventricles. Jack’s heart only has one ventricle, so it has to do twice the work to pump blood to his lungs and his body.

After 7 days in the hospital we took our new little family member home for the first time. To wait. Wait for him to get sicker. Wait for surgery. Wait for nothing. Wait for something. Just wait.

First time parents are always nervous. Watching their baby sleep. Checking to see if he’s still breathing.

I would sit in the floor next to Jack’s cradle at night, touch his tiny little leg, and pray for a miracle.

When Jack was four months old he underwent his first open-heart-surgery. There’s nothing about that day that I will ever forget. The packed-out waiting room, the long hours between calls from the OR, the fear. While the rest of the world seemed to rush by outside the windows, our world was standing still. Then finally, the call came. He’s out. It wasn’t perfect, but he’s ok.

The Heart that Jack BuiltPeople try to prepare you for what its like to see your baby for the first time post-op. It’s surreal. Your sweet baby. And there’s nothing you can do to change it. It’s the epitome of learning to trust God with your most precious treasure.

Jack fought in the cardiac intensive care unit for almost 30 solid days. He got sick. Then he got sicker. It seemed like everything that could go wrong, did. It wasn’t fair.

We lived on our knees. Praying that God would save our baby. He was ours. And we needed him. Doctor after doctor would pour over his charts, desperately trying to fix what was broken. He was a puzzle that no one could solve. Time passed so slowly.

Then a new doctor brought a new solution—the answer to our little puzzle. He was our miracle. Handed down to us by the hands of a gracious God. We were so thankful. Jack started to heal. He opened his eyes. He smiled. Tubes and wires started to come off a little at a time. He got to sit up, then eventually, ride around in a wagon. Then on the most glorious day, we got to move to the step-down unit.

Jack went home on oxygen and 16 different medications. He was still healing from a most intense surgery and hospital stay and could only be held a certain way. Little by little, he improved. Oxygen went away, medicines were poured down the drain. Life went on.

Our little miracle became a regular baby. Learning to crawl and babble. Learning to pull up and then eventually, those hyper-momentous first steps. Moments we didn’t think we would get flooded by us. Our normal became more “normal”.

Jack was the talk of the town for a while. He was in a TV commercial for the Red Cross. He got an exclusive meeting with Santa. He was on the front page of the newspaper. He was the star of a mid-day news report. People flooded us everywhere we went. BABY JACK!!! He was a tiny, adorable little celebrity. It was so nice to know how many wonderful people were praying for our sweet boy. He is here now because of that army of prayer warriors and we are forever indebted to them for their love and support.

The Heart that Jack BuiltJack just turned three years old. Where has the time gone? He started to preschool this year and he LOVES it. He loves going to Sunday school at church, playing with the neighborhood kids, chewing on toothbrushes, and playing with mommy and daddy’s phones. He’s way too busy to sit down long enough for a movie but likes to sing “Let it Go” from Frozen and his performances come complete with arm motions and booty wiggling.

Life happens. Jack has taught us how true that is. Life is unpredictable and scary. Its happy and sad. Its wonderful and terrible. That’s just how it works. The key is to focus on the joy. Focus on the happy. Focus on the wonderful. Live in the moment and trust in the future. He’s truly our joy. We can’t imagine who we would be without him. We thank God for saving him every day.

Our journey is far from over. Finally getting past Jack’s next surgery will be a blessing and watching him grow into the role of big brother… Well, that’s what life’s about.

We are currently waiting for Jack’s next open-heart-surgery. It will be sometime in the next year or year and a half. It’s surreal right now for us to even imagine going back to that unit, seeing our boy back in that bed. But we have learned to trust in God and appreciate the moments in between. Our normal is the only normal we know.

We wouldn’t trade our boy for the healthiest boy in the world. 

About the Author: Crystal is mommy to CHD warrior Jack (3) and soon-to-arrive baby brother, Harrison. She and her family reside in Sweet Home Alabama where she is a full-time high school teacher and varsity cheer coach and the president of the developing Alabama chapter of the Children’s Heart Foundation. She enjoys recording her journey with Jack on her blog FacingGoliath. You can also follow her on Instagram.

About The Author


MomBabble

Mary Katherine is a southerner, born and raised. Growing up in Alabama, she developed an affinity for lightning bugs, sweet tea, playing guitar, and having strong opinions. She's happily married with a son (Nugget) and two fur babies. Fun facts: MK is a living kidney donor, speaks a little Thai, and has written two novels.

1 Comments

  1. You had your Daddy,s brown eyes
    and birthday.
    You had your mamma,s heart

    broken.

    for my son,

    paul jr.
    born on his daddy AND grand-daddy,s birthday. 1/19/1988
    he died 1/21/1988 hlhs hypo-plastic left heart syndrome.

    love.
    it is all about love.

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