Caregiver

Cystic fibrosis presents many daily physical, mental, and emotional challenges for patients and caregivers. As a CF caregiver, one of the most enduring challenges has been making sure my daughter...

Finding out that your baby has CF is such a scary, unsettling time. Your mind goes to the one thing that you know you can control: The outside world. You...

Our first visit to our care center, like most parents of a child with cystic fibrosis, was not pleasant. I vaguely remember the walk from the parking garage to the...

It was after our son's second hernia repair surgery that it was confirmed. The nurse came out to the waiting area (not good) and requested to speak with the parents...

Before having a child with cystic fibrosis, I never realized how much attention towards cleaning and sanitization is necessary to keep patients healthy and safe. COVID-19 has normalized hand sanitizing...

Imagine you could have a place in preventing a tragic incident from occurring. Think about how wonderful it could be if you could prevent a mother from losing her child...

It is a challenge for me to remember two things: what life was like before being a parent, and what life was like before cystic fibrosis. In many ways, they...

Receiving a phone call that your new child's newborn screening detected cystic fibrosis can be a frightening situation. Your doctor will probably advise you to bring your baby in for...

Whether it is your first child or your fourth, a new baby brings physical, mental, and emotional exhaustion. Mothers are dealing with fluctuating hormones and the recovery period after labor...

I was recently scrolling through Instagram and a post caught my eye. It was made by someone with thousands of followers and said something to the effect of how sad...

Our daughter, Margo, has been in daycare since she was four months old. As two working parents, daycare was always a given for our family. Margo’s cystic fibrosis (CF) diagnosis...

When our son was first diagnosed with CF, what began as a new parent schedule shifted gears to a caregiver schedule. Everything in our life could be measured, lined up...

Millions of people are caring for loved ones who are sick or disabled. In fact, some 25 percent of U.S. adults report providing care or assistance to someone with a...

I cannot think of a time that I was not anxious. I believe it is now a part of who I am. When I became a parent, it was increased...

Read Part I here. I will never forget the day we received the phone call. It was a Wednesday, and Rhett and I were both at work. The genetic counselor...

Most of us know what a caregiver does, but not everyone fully understands what it is like to be a caregiver until they are in that role. To start a...

It's just about impossible to keep a steady daily routine when you have a baby with cystic fibrosis (or a baby at all, really). Here's what an honest morning routine...

As I watch my 20-month-old son spin around with his eyes closed, laughing the whole time and blissfully – maybe purposefully? – unaware of how close he somehow simultaneously is...

When you give me that look I know you mean well. I know you’re trying to show me that you sympathize. I know you might not be able to help...

Advocacy, even for CF, used to be as foreign to me as most of the intricacies of the federal government. However, as my family faced a dire need for access...