Parents Need Support Too

Today we’ve got a guest post from a reader whose little boy, Teddy, has chronic lung disease. We’ve featured a lot of stories about poorly babies and children in the past, but today’s post is a bit different, in that the writer Lucinda is talking about how it’s important to look after yourself too. Without further ado I’ll hand you over to Lucinda.

As we all turn our attention to colder days and cosy nights, as parents of an ill child I’m also living with the dread. Coughs and colds are all part of being a child and winter time, but when you have a child with chronic lung disease this time of year brings with it the fear of re-admission to hospital.

Our gorgeous almost-three-year-old has a complicated medical past which has resulted in his short life to date being punctuated with hospital visits – our longest stint being six weeks. He’s been living on (and off) oxygen in this time, now attends mornings at nursery and is able to live a largely normal life. The problem is, one bad cough/cold that turns into a chest infection is game over and we are back in hospital with rather serious health consequences.

Of course, there’s no denying that being ill is terrible for the person unwell, but how it affects those around them is quite remarkable. If you too have an ill child, I’m writing this to reassure you that you’re not alone and that it is hard.

During that six week stint at hospital, it felt like I hardly saw my husband. We tagged in and out to care for our son and had no time/energy for time and conversations that weren’t about hospital and our son’s care. It took a while to mend that!

I couldn’t go back to work – my part-time return to work as a lawyer always seemed to fall just as we were re-admitted to hospital. After three failed attempts to go back to work, I concentrated on my son’s care and running Nurturing Mums and the Nurturing Mums Store around him. This wasn’t the career I’d worked so hard to build and it was tough having it taken from me at the time, but now I’m grateful for all the extra time it’s allowed us to have together.

I didn’t sleep in weeks. The constant checks and wake-ups of your child and other peoples’ children are relentless. And if you’ve been through it, you’ll know you can hear machines bleeping in your dreams – for weeks, if not months, after you leave.

One thing that I really struggled with was the fact that my son’s care was out of my control. Your child’s care is largely shaped by doctors and nurses, some of whom have never met them before. I turned into a lioness who knew my son’s medical condition inside out so I could have more of a say in his care. We found with every shift change there might be a change of opinion as to how we should best care for him. Therefore, being as clued up as I could be, and assisting with nurse and doctor handovers, meant he had better, continuous care.

I also really struggled with only being known as ‘mum’. I understand why the nurses can’t learn everyone’s names, but my name is Lucinda. Being only known as ‘Teddy’s mum’ really hammered in an identity change to becoming a mum and allowed very little time for ‘me’.

It’s understandable, but however wonderful friends and family are, when you have a child with a chronic condition, people forget how tough it can be and that there are so many highs and lows – all the time. I find it really hard when well-meaning friends and family say ‘it’ll be ok’…. Will it? How do you know? I think if people want to help it’s best to ask how we (the parents) are feeling as well as the child. Ask how you can help – don’t wait to be asked. Offer food / company and WINE.

If you have an ill child, please don’t feel like you need to go through it alone. Sharing has been a great way for me to process and deal with the difficult times and rally support, which has been invaluable.

Here’s to wishing you good health this winter, as that’s all we could ever want.

Lucinda Hutton runs Nurturing Mums postnatal courses across London & Market Harborough and has an online store full of carefully selected items for mums, mums-to-be, babies & nursery. Lucinda lives in North London with her husband and two children. Far too fond of fizz and lawyer by trade.

Image from The Vintage House That Could home tour on Rock My Style

The loves of Lisa’s life are Rich and their kids, Lyra and Jenson. Although she does wish they would let her have a shower in peace every once in a while.

5 Comments. Leave new

It’s such a shame that the timing of this post is mid Christmas/new year because I don’t think people will be expecting posts. I would have liked to hear from other mums.
My son has a benign tumor – diagnosed earlier this year and we’ve had 6 months of chemo only to find the tumor has been growing again and now starting a fresh 20 month cycle of stronger chemo.
Whilst I’ve found it helpful talking to other mums on the ward, I’m always mindful that usually there child has a much more life threatening cancer than my son. I’ve found it incredibly hard to speak to most of my family and friends about it, I feel that they just don’t understand and I hate more than anything them asking how I am and telling me that I must ‘look after myself’. Maybe this is because I do make sure I’m taking care of myself, and I hate the way that it’s phrased ‘and how are you? Are you ok?’
I’d rather they just leave me alone to get on with it. I can’t do anything else about the situation but go with it.
The best support has been one of my best friends who doesn’t ask many questions, but texts me every treatment day just Wishing us a speedy treatment, or that will just accept a ranting email and send me something back about his life that makes me feel normal. And the other support has surprisingly been my best girls at work, who in the early days ended up being the ones I shared most information with and one in particular was brilliant in their responses and still is.
Anyway this ended up a long comment with no real purpose, but wonderful to read such a post on here and no, we are not alone.

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So sorry to hear about your son C. Sending you and him lots of positivity and love. I’m glad to hear that you’ve got a strong support network and fingers crossed a few more readers come across this post and leave a comment so you can hear from other mums. xx

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‘it’ll be ok’….
Argh. I literally got to the point where I just didn’t respond to people if they said that to me. Completely different situation, but our daughter developed sepsis and menigitis during birth. Having just had a baby via emergency C section and being rolled into ‘recovery’ without said baby was completely not how I imagined it. But the worst were people telling me ‘it’ll be ok’ – at this point I didn’t even know if my baby was alive, how can they promise me that it will be ok.

And still people do the same. We are lucky that our girl recovered well from her illness, despite in and out of hospital over the first 4 months of her life. But still people say ‘oh it’s all fine though isn’t it’ NO – menegtitis can cause life long issues, we won’t know of these until they come up with could be months, years etc
I’ve given up correcting people as they always just end up calling me a pessimist. Which I’m not, I’m just prepared for if something does come up.

I wish you and your bub all the best – I hope this winter is kind. Massive congratulations on building your businesses up through everything your family is going through.

Ps. Definitely know how you feel about hospital machines etc. I also struggled with hearing all about the other sick babies on ward rounds (as those paper curtains are definitely not soundproof)… it was always further reminder to me of what we were in and that our baby was really sick too.

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Excellent post but I agree the timing is a little awkward. It’s such an important topic and I think it’ll get missed easily at this time of year.

Our little boy is not nearly as unwell but has asthma and we’ve been admitted to hospital more times than I can count this year. Every sniffle and cough has us on edge and yes, it will be ok is not really helpful (no matter how well meant it is) at the time!

And I also hate the shift changes. Every single time we re-explain what happened (doing doctors read the notes??) and get given different advice. It’s incredibly frustrating although the overall care in our local hospital is excellent.

Wishing you all the best for 2018!

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Ditto on the timing, such a shame, but so glad I’m reading this now. I can’t relate as we are very fortunate to have a child who has only been admitted a few times for short instances for various illnesses, but I can’t begin to imagine the strain on parents who are caring for a sick child for any amount of time having been through only a few short stints myself. Sending everyone all the best for 2018 and hoping those coughs and colds are leaving you in peace. x

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