Cystic Fibrosis is a complex condition that affects both mental and physical abilities in children and young adults. For any parent facing this with their child, it is only natural to want a plan for moving forward. There will be a range of complex care requirements as your child gets older and develops, and it is vital that you understand the condition in order to properly look after them. So, this guide has four tips for any parent navigating CF to help them feel less alone and more seen.
Read Up and Listen
Your first instinct will be to sit down and research the condition, and you’d be right to roll with it. Learning about what to expect, while remembering every case is different, is a really helpful exercise. Being the care lead for a child with Cystic Fibrosis is demanding, and there are many layers to understand and accept as the journey progresses. There will be constant updates, regular appointments, and frequent interventions so knowing what you’ll be faced with is empowering. Listen and take notes during all key check-ins with the medical team too because they will be able to give a full assessment of the condition as time moves along.
Consider a Home Nurse
If your budget can stretch, or there is funding available, then the option of pediatric home nursing is definitely worth the exploration. This in-house, shift-based service allows for practical, expert support at home for you and your child. A trained nurse will understand the ins and outs of the condition and how to manage it so you can step back for a few hours. It is unrealistic to expect that you can cover all the care needs through the day and night, so something like this is a viable avenue for both peace of mind and well-being.
Be Open-Minded
Every case of CF is different. While you may be taken aback by the general statistics about the condition, it is essential to stay open minded and take each day as it comes. Your child is not the same as someone else so their story will be unique to them. Staying open minded combats creeping anxiety and helps you stay resilient when it is needed the most.
Enable Your Child
While there will be obvious disabilities that are an unavoidable part of CF, your main role will be to enable your child to be their authentic selves despite it all. As a parent, that’s all you ever really do anyway, and just because you’re faced with adverse circumstances doesn’t mean you should stop doing all the basic building blocks that make a child feel confident and a part of the world around them. Speak to them about their condition and give them a voice in it all, and you will both feel better and more like a team.
A Cystic Fibrosis diagnosis means different things than it did 20 years ago. There are new medications, treatments, and advances coming to light all the time in the healthcare world, and everything is worth the exploration. Giving your child the best chance they’ve got means throwing your whole self into it, and remembering you’re a human too.
Thank you,
Glenda, Charlie and David Cates
