Columns

Last week in North Carolina, the feel-like temperature was 105 F. And this week has been in the mid-90s. It’s this hot already, and it’s only mid-June. That’s hot for anyone, but for someone with epidermolysis bullosa (EB) like my son Jonah, it’s almost unbearable. Imagine going out…

I heard my son Jonah sigh as he sat in the stadium seat beside me at Friday night’s minor league baseball game in our hometown. It was his pain sigh. I know it well. Here we were again at an event that should be all fun, and he couldn’t…

“A journey of a thousand miles begins with a single step.” – Laotzu I just finished packing my bags for my first flight in more than two years. (Yay, we can travel again!) But while a trip may begin with a single step for some, traveling requires many more steps…

I have had two friends in the last three months give birth to premature babies. The first, Izzy, was born six weeks early with a genetic condition called DiGeorge syndrome and an interrupted aortic arch. She is home now, on supplemental oxygen, after spending more than three months…

You never know what will happen between waking up and the end of the day. That’s part of life. But waking up knowing that you might come home after a long day and have new wounds and blisters and be unable to walk any farther is something most people cannot…

On Saturday night at 10 p.m., when we were exhausted and had spent the entire day at the baseball field, I got an idea — or a bee in my bonnet, as older folks in the South like to say. I decided I wanted my boys to hunt for their…

“Dilly Dilly!” Jonah said as he drank yet another virgin strawberry daiquiri. “Do we have these in America?” he asked with pink-tinged lips, looking hopeful. He finished, yanked off his shirt, G-tube shining, and headed to the wave pool. Again. Jonah enjoys his new favorite drink, a virgin strawberry…

I went down a rabbit hole this morning reading my old blog posts from 13 years ago, when our son Jonah was born. I teared up as I read the prayers I requested on the eve of his birth. My husband, Matt, and I had lost our first son,…

It is vital to take care of your body, especially when you live with a health condition. Otherwise, you might not be able to function or do the things you enjoy due to pain or other symptoms. Because I live with epidermolysis bullosa, a rare condition that causes my…

In light of Rare Disease Day on Feb. 28, I wanted to answer some common questions I am asked about my son Jonah, who has epidermolysis bullosa. This will be a pretty good column, but if you want to read something even cooler, you should head back to this…

We all grow up with certain beliefs about ourselves. Sometimes we don’t even question them. Other times, we may realize we were wrong all along. Or, we may choose to hold on to them. If our beliefs are positive, they could help us along our way. If not, they could…

It has been 13 years since we spent 32 days in the neonatal intensive care unit with our son Jonah, who was born with junctional epidermolysis bullosa. As the years have passed, the feelings, sounds, and smells of those days have faded. The beeping of the machines maintaining baby…