Searching for Joy, a story to bring awareness to Congenital Heart Disease

“The biggest mistake I have made in the past few years is being stubborn and not accepting the life that God has given me, because in that, I tried to manage life my own way and missed out for a while on all that God had for me in the journey. And there has been so much…”  

- Emilie

 

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Before Emilie got pregnant, a dream came upon her. Her friend was trying to give her a gift, but God told her friend it wasn't good enough. It had to be pure gold and refined in the fire…

The ultrasounds were all normal, and they were excited to be having a new baby to bring home. The day came and a beautiful baby boy was born. Emilie held him in her arms, but shortly after birth the nurse noticed he didn't look right and took him to the nursery. He was then sent to the NICU. The doctor came in, and told them he wasn't for sure what was wrong but their child had only half a heart. He was life-flighted to Cook Children's Hospital in Fort Worth and diagnosed with a form of HLHS, or Hypoplastic Left Heart Syndrome. It was all surreal to the shocked parents. Emilie said, "I felt like I had left my body and I was watching this happen to someone else. Everything was spinning. How could this be happening to us? I had never heard anything about heart defects except for a friend in college that had a hole in his heart. Had no idea they could be so complicated, and honestly looking at my son, he looked so normal on the outside. It was so hard to grasp the concept of all that the doctors were telling me was going on inside of him and the implications of it all."

Since that day their family has been on a journey, a journey they call "searching for Joy", a phrase inspired by their search for a missing stuffed animal giraffe named Joy. Five days after being at Cook Children’s, their baby boy went into surgery, one of three open heart surgeries as well as six other procedures/surgeries. The journey has been a long one, with countless doctor visits, complications, hospital stays, and exhaustion. He is also on a feeding tube and was diagnosed with autism. While she was telling me about the struggles, the love on her face for her son was just beautiful.

The days where hard, with lots of prayer, and lots of searching for Joy. I think Emilie put it perfect when she said, "I always heard it said that God will not give you more than you can handle, but now I know that God WILL give us more than we can handle. That’s why we need God; He is the one that can handle it."

Through their journey of "searching for Joy", they realized how before having their son they seemed to lose their joy. And how through this journey they have found Joy. It wasn't because it wasn't hard, or because they wanted their son to have surgeries or to go through the emotional roller coaster of it. Sometimes it's the hardest times in life when we aren't sure we will get through, that later on in life we are thankful for, thankful for the journey of Joy. It's most often where we find real empathy, patience and understanding.

Looking back, she sees now what her dream, the dream she had before she was even pregnant, meant. In her own words: "The children God has given us and the journey we are on with him are pure gold, a gift from God that he wants to give us, because he sees us, notices us, and loves us. But gold is extracted by fire. We are so special and pleasing to him. He is giving us a gift of pure gold and nothing else is good enough for us, but it will come with fire and refining fire. I do not believe God caused my son to have a heart defect, but he used his defect and struggling for good." How powerful is that!

Emilie, her husband and their three children attend Antioch church in Waco. They love their church and served as missionaries in Sri Lanka for three years before they had their sweet CHD warrior! CHD, or congenital heart disease, affects nearly 40,000 newborns a year - roughly one in every 100 newborns.

I was moved by Emilie, her love for God, and her desire to raise awareness for CHD, as well as feeding tube awareness. Their little miracle is now 7, attends school and doing great and will hopefully soon be off his feeding tube.

Ironically it seems that God has led me to all the people that I myself need to hear stories from. One of my twins also has CHD and at 5 days old had open heart surgery as well. This story brought back so much to me.

You won't want to miss next week, a story of beating the odds, from serving time to success, 

The Waco Storyteller