Miracle in my Life

My firstborn son has cystic fibrosis. This genetic disorder is currently incurable and will contribute to a shortened life span for him. The first year of his life he was hospitalized three times to fight respiratory infections. We faced an uncertain future with only a certainty of medical issues ahead.

Medical insurance offered through my employer begins each January. We carefully read the offered plans and make the best choices we can each year. That first year’s insurance was going to change in six weeks. The benefit package for the coming year was less robust and greater out-of-pocket costs loomed.

Hospitalization and prescription coverage were the two primary concerns. My son’s three admissions had drained us emotionally and financially. His maintenance medications were absolutely essential to keeping him healthy and appeared to be where most of our costs would be going.

One of his needs is for digestive enzymes. These prescription capsules are taken with every meal and snack. Without them his ability to properly digest and absorb nutrients is non-existent. At the time, he was one year old. His dosage just to prevent stomach aches, bloating, and diarrhea rivaled that of an adult.

I built a spreadsheet to calculate his prescription needs and our expenses under the new plan. The numbers were so disheartening, I titled the file Medical Bankruptcy.  We had no idea how we would pay for it.

At church, at home, with friends, with each other, or alone, we prayed. We prayed for God to intervene. We prayed for strength to go on. We prayed for his healing. We prayed for a miracle.

Our income was borderline poverty level and we had recently been receiving government assistance. One of the social workers referred us to the state-run pharmacy for a consultation. We processed the necessary paperwork and the state pharmacy ordered a three-month supply of his enzymes. Delivery would occur before the end of the calendar year.

The next week, our son got a stomach ache. We had not changed his food or medications, but something was bothering him. His diaper changes showed a day of diarrhea, then nothing. Constipation? Intestinal blockages are common in cystic fibrosis patients and may or may not require surgery sometimes to clear them out. The prospect of our toddler going back into the hospital for surgery scared us.

We planned to take him to the hospital the next morning but he cleared the problem and resumed normal functions. Except for one thing. His need for digestive enzymes drastically reduced. What had been an adult’s loading now tapered down to a level more appropriate for a one year old. The new dosage stabilized there and became his new baseline.

The state pharmacy called a week later. Our order was in. We went and picked up the cartons of enzymes and filled the back seat of our little car. At home we unloaded it all and counted it out. I jumped on a spreadsheet and did the math.

The order had been placed when his needs were high. At his new level, the supply we had just received for free would last us the entire next year. What I feared as certain medical bankruptcy within the next twelve months had vanished entirely from our situation. God had changed our son’s metabolism so dramatically, we had nothing expensive to purchase.

Our son turned 23 this year. He has remained healthy and hospital free since that first year. He played soccer for seven years and his respiratory health remains excellent.

We had prayed for something to change, never knowing what God would do. Change came in a way we never expected it.

Your blog just became a viral sensation. What’s the one post you’d like new readers to see and remember you by? Write that post.

Big things come in threes

At birth, he was pink and perfect. Ten fingers, ten toes, all parts of him so tiny, so beautiful. The tears shed by my wife after her all-night labor expressed her joy in a way no words ever could. He was our first child. The first grandson on both sides of the family. The future unfolded into eternal potential as we looked at him.

Three weeks later we thought we were going to lose him. He was projectile vomiting after every feeding and losing weight fast. A note in his medical file stated “failure to thrive” and we shed different tears now. We frantically changed doctors almost as fast as we changed diapers. Each one shook their head in puzzled concern as they listened to us describe everything we did, saw, and thought.

They repeatedly asked us the same questions with no better result or diagnosis. “Does his poop stink?”
What kind of question is that? We were first time parents. What did we know? Sure, baby poop stinks. What does that tell you, doctor? What they didn’t do was provide any frame of reference. Say, compared to sauerkraut left out of the fridge overnight that has warmed in the morning sun at the breakfast table alongside leftover sardines in mustard, does his poop stink?

His pitiful crying pained us terribly through each dark night. We rocked him, held him, tried to feed him again and again. He always threw up. Nothing stayed down long. The exhaustion and worry drained our strength. We kept trying new doctors.

We finally encountered a gentle older doctor who patiently listened to us like all the others. Unlike them, he didn’t ask us to describe poop potency. He nodded at appropriate times and ordered an obscure test. “Just to rule out this one possibility.”

Two days later, we had a diagnosis, cystic fibrosis. We had never heard of it. We were completely unprepared. We needed to learn. The journey of our lives had just taken a major turn.

Today you can write about anything, in whatever genre or form, but your post must mention a dark night, your fridge, and tears (of joy or sadness; your call).

First Birth Part 1

First Birth Part 2