Guest post: Parenting with a chronic condition - the ultimate juggling act

[NicolaDMumsnet]

Parenthood is a juggling act. An amazing, sleep-deprived, make-it-up-as-you-go-along juggling act. 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 the course of those three decades it’s naturally – albeit reluctantly – taken centre stage in my life. When my son was born, that all went out the window. It was clear that learning to parent whilst also giving my health the time and attention it needed was going to be challenging. I found it frustrating that the amount of advice and stories online from others going through the same struggles was minimal. Surely there are thousands of mothers with conditions that are going through the same thing as me?

I’m acutely aware that every condition is different, and that every person living with those conditions is different again, so my learnings may not be 100% relevant for everyone. However, whether you’re also living with CF, or you have lupus, or ADHD, or something else entirely, I hope my learnings at the very least provide reassurance that there are people like you. That there are lots of us facing the same challenges as we learn to navigate this new life with a newborn and our health vying for attention.

1. Your health must remain a priority

When my son turned 12 weeks, my team told me I needed to be admitted for three weeks and that he wouldn’t be able to be with me in hospital. It was incredibly hard. The idea of being away from him for a few hours, let alone days on end, broke my heart. I cried a lot during that admission! The only thing that got me through was knowing that three weeks in the grand scheme of things were just a small fragment of time. I knew if I didn’t have the treatment, I wouldn’t be well enough to look after him and I wouldn’t be around for as long as I could be. It can be so hard to look beyond the short-term and think of the long-term goal, but it was focussing on that that got me through. Fact is, you will have to make hard decisions that are best for you and for your health, because you need to be healthy for your child.

2. Don’t compare your experience with others

I sat through 18 hours of NCT. Some of it was interesting and some of it important, and I was pleased that my husband was at least exposed to the information about childbirth at least once. However, a lot of what they were talking about just wasn’t relevant for 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 wouldn’t be able to exclusively breastfeed due to specific medications I take. The books and 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 (as I am sure so many of life’s experiences have). Remember that is 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 and bounce 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 they’re enamoured by Bluey and that gives you 20 mins 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 the next bottle. Baby wearing, play gyms, Baby Shark: there’s lots of options 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 certain time, that you factor in your symptoms when you’re planning trips, or that you dedicate an amount of time to therapy each morning. Whatever it is, do what you can to cling on to it. I know in the first few months that maybe feels a little unrealistic, but after a time, a routine will start to form. Try to establish a routine that fits in with what you already found worked 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 and beyond, I have developed a whole new appreciation for my body and what it has achieved. Despite all the issues we have battled together all these years, it really stepped it up! I’ve never felt prouder of my body and all that she has done for me.

It’s inevitable that there will 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.

Instagram: @breatheasy_