Parenting with a chronic condition: Laura’s story

Parenthood is a juggling act. An amazing, sleep-deprived, make-it-up-as-you-go-along juggling act. But chuck in the additional complication of living with a chronic condition, and that juggling act becomes juggling whilst walking a tightrope blindfolded.

I have lived with cystic fibrosis my whole life, and over those three decades, it’s naturally – albeit reluctantly – taken centre stage in my life. But when my son was born, that changed. It was clear that learning to parent while also giving my health the time and attention it needed would be challenging. 

It was frustrating to see minimal advice online from others going through similar struggles to me, especially when it comes to navigating life with a newborn alongside their health.

I thought: “Surely there are thousands of mothers with conditions that are going through the same thing as me?” So I decided to come up with my own advice to help and reassure other parents that they are not alone.

My top tips:

1. Your health must remain a priority

When my son turned 12 weeks, my team told me I needed to be admitted to the hospital for three weeks. The idea of being away from him for a few hours, let alone days on end, broke my heart. It was incredibly hard.

I cried a lot during that admission. The only thing that got me through was knowing that three weeks was a small fragrant of time in the grand scheme of things, and I knew if I didn’t have the treatment, I wouldn’t be well enough to look after him.

It can be hard to look beyond what’s happening in the short term and think about the long term, but it was focusing on the future that got me through the admission. 

The truth is you will have to make many hard decisions throughout your life. But you must remember that your health has to remain a priority so you can be there for your child.

2. Don’t compare your experience to others

I sat through 18 hours of NCT antenatal classes. Some of it was interesting and important. However, a lot of what they were talking about just wasn’t relevant to me. 

I knew I would be on a labour ward, that I’d need continuous monitoring and that I couldn’t use a birthing pool. I knew I couldn’t exclusively breastfeed due to the specific medications I take. 

The books, apps and social media will share a certain view of what pregnancy and childbirth will look like, but chances are your experience will look totally different. Remember that it’s okay and doesn’t make your experience or choices any less valid.

3. Gadgets and gizmos a-plenty

There seems to be a machine for everything you could possibly need to raise a baby — formula-making machines, white noise machines, cots, and bouncers that rock themselves. 

Don’t feel ashamed to capitalise on anything and everything that makes your life easier. If a dummy calms the baby for long enough for you to have your meds and grab some breakfast, use it. If Bluey enamours them, and that gives you 20 minutes to sort your prescriptions, let Bluey take over! 

My son loved sensory boards, so I made my own for him to look at in his play gym – it kept him entertained for long enough for me to finish my nebuliser and make up his next bottle. 

Babywearing, play gyms, Baby Shark: many options are available to help make your life easier. Not to mention accepting help from family and friends!

4. Build their routine around your own

Over time, you’ll have developed a daily routine and medical regime that works for you. It might be that you take meds at a particular time, factor in your symptoms when planning trips, or dedicate a certain amount of time to therapy each morning.

Whatever it is, do what you can to cling to it. I know it might feel a little unrealistic in the first few months, but in time, a routine will start to form. 

Try to establish a schedule that fits in with what works for you (even if that means that your routine differs from other parents!). If you need to do 45 minutes of physio in the morning, plan their naps around that so you can do the treatment you need to be healthy.

5. Marvel at what you have achieved

I’ve had a complex relationship with my body for decades, mainly because it has managed to let me down a lot and fight against me time and time again. 

But, in pregnancy and through childbirth, I have developed a whole new appreciation for my body and what it has achieved. Despite all the issues we have battled together, it stepped it up! I’ve never felt prouder of my body.

There will inevitably be hard days. Allow yourself to have them, and don’t beat yourself up about it. Remember: you have already overcome so much. You’re doing great.

You can follow Laura’s parenting journey on Instagram. 

This article was originally posted on MumsNet.

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