Breck, mom of 3 including a 3rd-grade CFer, generously shared a post on how she has learned to manage the overwhelming set of to-do’s that come along with this disease.
Brett and Kelby are proud parents to 11-month-old Alexander, a "pro crawler" who was diagnosed with cystic fibrosis at 10 days old. Together, they have learned to navigate first-time-parenthood alongside the complexity of CF treatments. We hope you are as inspired by their story as we have been.
For those of you who follow the blog, we're trying a new format this time - Brett & Kelby have shared their story as a letter.
Hello. We are Brett and Kelby Nicolas.
Our son, Alexander Nicolas, is 11 months old and was diagnosed with Cystic Fibrosis at 10 days old by the new born screening test. He has mutations DF508 and 2789+5G>A.
When we first found out, we were disoriented. We had heard about Cystic Fibrosis from doctor TV shows, but we didn't really understand what it was.
I (Brett) did the one thing you should never do in this type of situation - I looked it up - and ended up giving myself a panic attack. I thought that I had given my child a short life, and that there was nothing I could do about it. It wasn't until we talked with Doctor Mary Ellen that I started to feel more in control. Thanks to our conversation, I began to feel very optimistic about the research going on to fight against this disease. She described the first set of preventative treatments, and I started to feel like there was something I could actually do. There was hope.
My husband was so upset - how could this be real? While I looked for information about Alexander's mutations, my husband distracted himself with work. He didn't know what to think, so he just didn't. It helped a bit that his boss and one of his co-workers have family connections to CF - talking to a real person about living with CF was the best way to begin wrapping his head around the fact that he had a child with this disease.
We are brand-new parents, but we only know how to parent to a child with CF...so all of this seems normal to us. Others will give you advice, but none of that matters until you have that little one in your arms - that's when everything changes.
My husband and I learned about the disease early enough that we never got the chance to be non-CF parents. Our family does everything, just like our friends with their kids, with a little bit extra. Since we have always had to do it this way, it is our normal. Of course there's going to be much more to learn and do as we live longer with this disease, but there is nothing that we can't handle now!
We keep the joy in our lives despite all of this, because we realize that there's always someone out there who has it worse. Anything could happen, CF-related or not, so we just focus on what is best for Alexander. His smile keeps us going - he is just too adorable! We do everything to keep him healthy and to fight this disease. We love being his parents. We feel that we were put here to be with him.
Of course, with all of the treatments and appointments, it's really hard to find time for ourselves. My husband loves to play Xbox, and I love to read. We feel our most relaxed when we sit together to do these little things. Of course you can't ever escape the baby completely, but we are lucky - he likes to watch the colors on the screen and to read! We've also started to take family walks around our town to spend some time together.
In the past 11 months, we've passed a lot of milestones. Alexander...
- has 10 teeth!
- is a pro crawler
- has started walking
- eats with us
- and is just very active!
We love watching him grow. Lately, we've started to say that the baby is "evolving" when he learns a new skill or way to escape!
The milestone that we're most excited to reach (besides his first birthday) is having his NG tube removed. We've been on it for about a month and a half because Alexander is a lazy eater - food just doesn't interest him. On the NG tube he has gained a lot of weight, and we're moving closer to our 50th percentile goal. For the past week we've had real success with Alexander hitting his daily goal all on his own, without the pump! He is finally showing active interest in eating, so we're just waiting to hit the milestone of the day it is removed.
The most helpful resource on this journey has been the CF clinic. They are always ready to help us and do everything that they can to put our minds at ease. Whenever we need to come up with a plan, for weight gain or for fighting an infection, they're on top of it.
Our friends and family have also been very helpful to us. We're all learning about this disease together, and they help us whenever we need them.
If you're a parent starting out as we did, keep your head up. Love your baby, and do everything you can to help him fight his disease. No matter what happens, he's still your baby, and nothing will ever change that!
Kate and her three daughters recently moved to Connecticut due to her husband’s position in the Navy. Her youngest daughter, Lucy, was diagnosed before birth with CF. Now 7 months, Lucy has the biggest smile, she’s starting to crawl, and Kate is in the process of figuring out how to work CF treatments into her family’s life.
We’ve had a great time speaking with Meg Hall, a social worker at Maine Medical who focuses on supporting cystic fibrosis families in both the child and adult clinics. Meg has had the unique experience of being the connector between the families and the healthcare system, and joined us this week to tell us all about why she loves her job.
Susan and Ted are a Portland, Maine-based couple with two grown daughters. Hogan, their younger daughter, was diagnosed with CF at age 3. She's now a thriving college student who has lived a remarkably normal life, not defined by her disease. In this post, Susan and Ted share memorable moments of their CF parent journey, and everything that they have learned along the way.
Helen and her husband, Paul, have seven kids, several of whom have chronic conditions. Their oldest son, Paul, has Common Variable Immune Deficiency, a condition that makes it difficult for him to fight off infections on his own. This interview will focus on Helen's experience learning to navigate the care for Paul's condition.
The primary purpose of The Folia Blog is to share the inspiring stories of the parents and patients that we meet in the course of working on Folia. It's truly amazing how families can persevere, and even thrive, in the face of significant challenges - yet their efforts are often unsung. By sharing their stories, we hope to bring the community of parent caregivers closer together, to motivate, empower, and ultimately to drive better health outcomes for their children.
If you are a superhero caregiver, or would like to nominate one, please don't be shy! Rest assured that you're not tooting your own horn - by sharing your story, you are helping to advocate for the community of parents around the world who have had experiences like yours.
We look forward to hearing from you! Watch out for our first Superhero Caregiver profile in the next couple of weeks.