Balancing a CF Diet and Toddler PickinessCystic 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...Reactions0reactionsComments1 comments
Allowing Our Child to Experience NormalFinding 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...Reactions0reactionsComments2 comments
Loving Your Care CenterOur 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...Reactions0reactionsComments1 comments
Our Son Can Not Have ChildrenIt 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...Reactions0reactionsComments0 comments
Our Cleaning And Sanitizing RegimenBefore 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...Reactions0reactionsComments0 comments
What I Want The Anti-Maskers To KnowImagine 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...Reactions0reactionsComments0 comments
How CF Has Affected Our Family Dynamic 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...Reactions0reactionsComments0 comments
The Sweat Test: Confirming Your Child's DiagnosisReceiving 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...Reactions0reactionsComments0 comments
Clearing The Fog: Advice For New CF ParentsWhether 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...Reactions0reactionsComments1 comments
Cystic Fibrosis and MasksI 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...Reactions0reactionsComments1 comments
Choosing To Send Our Daughter To Daycare: Part IOur 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...Reactions0reactionsComments0 comments
A Day In The Life: Pre-Teen Caregiver EditionWhen 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...Reactions0reactionsComments0 comments
Caregiver Resources: Where Caregivers Can Go for SupportMillions 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...Reactions0reactionsComments0 comments
CF and Caregiver AnxietyI 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...Reactions0reactionsComments0 comments
My Journey To Becoming A CF Parent: Part IIRead 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...Reactions0reactionsComments0 comments
Community Views: How Does Being a Caregiver Impact Your Life?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...Reactions0reactionsComments1 comments
The CF Caregiver: An Honest Morning RoutineIt'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...Reactions0reactionsComments2 comments
With Our Son, CF Might Be the Least of Our ProblemsAs 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...Reactions0reactionsComments0 comments
Please Don't Give Me "Sad Face"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...Reactions0reactionsComments0 comments
Why Advocate?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...Reactions0reactionsComments0 comments