A Daily Dose of Miracles

Having already experienced the death of my middle son to a rare congenital heart defect, I was devastated to learn that my beautiful, newborn baby boy not only had Down syndrome but congenital heart disease as well.

“It’s not the same thing that Travis had,” my doctor assured me. “It’s a hole between the chambers–probably a small one and may even close on its own.”

But at fifteen months old, the hole in Jay’s heart had not closed and it was decided that open-heart surgery was the best course of action. A heart catheterization–a minor surgical procedure–would be done beforehand to note the extent of the problem and make sure the surgeon met no surprises.

On the morning of the cath I held Jay’s sleepy, sedated body in my arms as long as possible then walked beside him as they wheeled him down the hall on a giant size gurney into the cath room.

An hour or so later my husband and I were ushered into the cath lab where X-rays lined two full walls. Jay lay on the cath table, still sedated and nearly as white as the sheets that surrounded him. A nipple stuffed with cotton was taped to his mouth where a nurse had dripped sugar-water to pacify him. It was frightening to see him so still and pale. I wanted to pick him up and run home but the doctor claimed my attention.

“I called you in here because I want you to see what we found. It’s not good.” This was not what I wanted to hear. The doctor explained that Jay had already developed pulmonary hypertension, a condition that made open heart surgery so risky that the physician advised against it.

“I don’t believe he would ever come off the heart-lung machine,” he said, apologizing for such devastating news. He had never known of a child so young to develop pulmonary hypertension. It surprised everyone. Without the surgery Jay’s life expectancy would probably be short. Barring any major respiratory infections such as pneumonia, he might live into early adolescence. I was in total shock. Was this a choice? Were they asking us if we wanted Jay to die now or die later? I was so tired, confused and frightened that I couldn’t even cry.

We followed the gurney to Jay’s room where we waited the next eight hours while he was monitored on a regular basis. I picked him up and rocked him, just wanting to hold him and protect him. I looked into his sweet, sleeping face, still pale and lifeless and knew I could never send him into surgery where the odds were greater that he would die than survive. We would take what years we had with him even if they were only a few, but my prayer was that God would perform a miracle in Jay’s life and heal his heart disease. The Down syndrome was no big deal to us. But I had learned from experience that heart disease is deadly.

In those first years of his life Jay astounded all of us, especially the medical profession, with his energy and vivacious personality even though the heart disease progressed. Upper respiratory infections were rampant during the winter and he had several bouts with pneumonia. Still, he survived. But he didn’t just survive. Jay celebrated life! He would sing and dance to music, chase the waves at the beach, play T-ball with friends and aggravate his brother and sister.

By his teen years Jay’s skin began taking on a slightly dusky appearance and he tired more easily. Doctors warned us of impending strokes or a fatal cardiac arrhythmia but I continued to pray for a miracle. I wanted to walk into that cardiologist’s office one day and hear him say, “Why, Mrs. Jones, we have no idea what has happened but Jay’s tests show that there is absolutely no heart disease present.” That’s what I prayed for–a real live miracle. But it didn’t happen.

Soon Jay began to sleep with oxygen at night but he still danced to his music during the daytime, dazzled friends at church every Sunday with his suit and tie and often went bowling or rented favorite videos. He was a joy to be around, smiling and laughing, hugging and loving everyone he met.

We began schooling Jay at home to cut down on upper respiratory infections after an extremely serious episode with pneumonia and a week of recovery in the hospital. But we still gave him social interaction with other people. We were just careful, making sure he wasn’t around anyone who was sick with a cold, flu or virus and we did a bunch of hand washing. Friends and family knew not to visit if they were not well. It became a way of life, but still I prayed for a miracle and Jay continued to dance to his music and go out for his daily Coke at Sonic.

When Jay turned twenty we had a grand celebration, calling it his “Miracle Birthday.” He had far exceeded all the doctors’ expectations. I visited briefly with his longtime cardiologist and said, “Tell me the truth. You never expected to ever see this day, did you?” He conceded that he did not. Perhaps none of us really thought we would ever see that day. No one except Jay.

Jay never worries about tomorrow. He lives every day in the present, squeezing all of the life he can from it then spreading it like sunshine to everyone around him. I feel blessed just being his mother. And somewhere along the way, in his now thirty years, I found that I had stopped praying for a miracle and began thanking God for the one I had. Though it wasn’t the big miracle I had hoped for, I finally realized we still got a miracle anyway. We just got it in daily doses!

All the days ordained for me were written in your book before one of them came to be.

Psalm 139: 16
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