This week marked the 26th anniversary of my first-born’s death. I promised you that I would tell you the story of Jess, it just never seemed like the proper time. But today seems right.
I wanted a baby so badly. It took us two years to get pregnant and for me, it seemed like an eternity. When I was about four weeks along – about the time her rudimentary heart started to beat – I got an inner ear infection. I was so conflicted about taking the Amoxicillin. Many years later after asking the question “Why?” so many times it was practically a mantra, a doc shrugged and said off-handedly, “The heart defect was probably caused by the virus that caused the ear infection.” Who knew?
Although that makes so much sense, a more mature Joy knows that only God knows why Jessica would be born with a coarctation of her aorta that led to her brain. One thing I know for sure, is that Jess was meant to be, her birth was both ordained and blessed by God, and I loved her.
At the well-baby check she had a heart murmur. Then again, most babies do. But that night, four days after she was born, when the ductus between her heart and her lungs shut down as it was supposed to, she suffered a circulatory collapse because of the narrowing of that aorta. Even in the dark I could see her purple, near-lifeless body contrasted against the white bunting. That was the first of many trips to the hospital over her 12 ½ years.
My Life Changed That Night
My life changed that night. The way I defined myself changed that night. I became an advocate that night. Before that night, I didn’t even know what a neo-natal intensive care unit was. Within 24 hours, we were practically living there. Jessica had her first open-heart surgery the next day. That was on a Friday. Her dad and I showed up at a local church on Sunday. I may not have been serving Christ at the time, I may very well have lost my way, but we knew this was bigger than us and we knew we needed Jesus. They loved on us there, they prayed for us even though they didn’t know us, and that church family ultimately helped us raise her.
It quickly became pretty apparent that we would outlive Jess. Over the years, her pediatric cardiologist came to trust us and finally felt safe in answering our questions. “What should we be looking for?” “When will we know?” “When is she going to die?” That’s when I learned that most of us take puberty for granted. But for someone like Jess, the strain on the heart is just too much.
Really Special Kid
She was with her dad when it happened, and I thank God for that frequently. He needed to know that everything that could have been done was done, and God granted him that gift. As they were driving – with Jess riding in the back seat – she went into cardiac arrest. He pulled over at a local restaurant and as he lifted her out of the car, he told me later he felt her spirit leave her. The ambulance came but she was gone.
When I got the call, I picked up my mom and we drove 80 miles per hour to that Modesto hospital. I got to sit with her for a time. My most special memory about that time was the absence of the cerebral palsy in her legs. She was relaxed and at peace and I knew beyond doubt that she was home with the Lord.
Jess was a really special kid. That’s not her mom talking…you can ask anyone who knew her. To this day I still maintain that she taught me so much more than I ever taught her.