Juggling work and parenting a child with CF: Natasha and Natalya

I went back to work when Natalya was eight months old. I couldn’t afford to stay off work any longer, but now I think I wasn’t ready. 

Every day, I felt overwhelmed by the stress of rushing to get all her treatments done before nursery each morning, and doing the CF-related admin during the day: ordering meds, contacting her CF team with questions, sterilizing nebulisers and syringes for her evening treatments.

And that’s not taking into account clinic days or short-notice appointments for cough swabs and checkups; it all soon became even more overwhelming to juggle it all.

I’ve been back at work for over two years now, and to be completely honest, I still find that it’s a constant rush to complete treatments, and I have to be really organised to make sure Natalya’s appointments don’t clash with my meetings.

I have to work long hours to make up time lost for appointments, and I worry a lot about hospital appointments and taking leave to cover them. What if she’s too unwell to send to nursery? How am I going to manage my workload around caring for a child who isn’t well, and fitting in increased treatments during these times? 

Having a job allows me to maintain my own identity

But despite my worries, I can honestly say that while going back to work has been one the hardest things I’ve ever done, I do feel a sense of pride in my decision to return to work.

I want her to know that anything is possible if you put your mind to it—that despite all the struggles of juggling everything, having a job allows me to maintain some sense of my own identity. 

Most importantly, I want her to know that her condition will not hold her back from her dreams. I’ve recently returned to university to study for a master’s in psychology.

Doing this alongside work and caring for Natalya is going to be difficult, but I hope she will see from all of this that she can achieve anything she wants to do in life.

My top tips for returning to work

I think my top tips for returning to work while caring for a child with CF would be:

• Start discussions with your line manager as soon as you’re ready. Make them aware of the situation, and provide them with resources about CF to help them understand the condition.
• Get a Carer’s Passport set up with your employer, detailing everything you do for your child’s care needs.
• Ask for a review by occupational health, get a stress assessment and look at things like adjusted absence trigger points to help support you to be flexible.
• Review your organisation’s policy surrounding time off for clinic appointments and hospital admissions.
• Discuss flexible working arrangements with your employer, including working from home where possible.
• Check out Cystic Fibrosis Trust’s Work Forwards programme, which can support you to fulfil your career dreams and aspirations.
• Contact Cystic Fibrosis Trust’s Income Maximisation Service, where a friendly adviser will help you to access any benefits you’re entitled to and make sure you’re getting the most out of your money.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives – and we won’t stop until everyone can live without limits imposed by CF.

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