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.