Chronic illness, parenting and summer holiday fun 2024

Chronic illness. It has made summer quite the challenge. I have been totally absent from Facebook and Instagram when it comes to Oojamabobs.

Most parents will agree, it’s tough balancing work life and home life and nothing tests that more than the Summer holidays. Let alone adding chronic illness into the mix. I’ve hardly found any time to work this Summer due to this chronic illness, but it’s been so lovely focusing on the kids and spending time together in between orders.

This summer we have done: bike rides, played a lot of Minecraft and talked a LOT A LOT about minecraft, gone blackberry picking, had a BBQ on the beach with friends, had lots of play dates with friends, gone to Inflatable World on the hottest day ever, been to the library several times and completed the library Summer Reading Challenge, gone to soft play with friends, attended our local Family Fun Day, gone Crabbing at a marine lake, celebrated my youngest’s birthday and had a party with our lovely friends, stayed with cousins in London and went to an amazing computer games event at the Science Museum, went away with family to Cornwall and had a fabulous time playing on various beaches, went to a home ed party (even though we don’t home ed!), went to a splash park in Bristol, celebrated our dog’s 3rd birthday by baking him a special dog-friendly cake and last but definitely not least, we camped by a river for a week with friends, kayaking, canoeing, paddle boarding and swimming, along with doing a spot of tie-dyeing.

I’m sure I’ve missed plenty of other things we did, but these are the ones from the timetable I ended up making, at the request of my eldest!

It’s been both a wonderful summer and at times a really difficult one. Chronic illness has made everything much harder and I frequently overdid it and really struggled.

The above might sound like an amazing and perfect list of activities, where my kids had the best summer ever, but there were also many days at home where I was mostly in bed, too tired to play or interact and the kids had to entertain themselves. Days where the parental guilt was strong due to many ‘lazy’ meals in a row of beans on toast, sandwiches, pizza, nuggets etc because chronic illness meant I was simply too tired to really cook.

There were times I shouted or snapped at the kids, times they complained about being bored. I’m not ashamed to admit there were times I was in tears because it felt so hard to parent and I felt like I had no idea what I was doing.

On our visit to London, I had a really upsetting experience that put even more of a strain on everything. I have a blue badge and one night our car window was smashed and my blue badge stolen. It was incredibly stressful trying to organise a replacement window in time for me to drive back to Somerset and also sort out parking and I ended up with not one but TWO parking tickets as a result of all this, adding to my long long list of life admin.

Back to the summer. I’ve always known my eldest was a bit different, but it’s becoming more clear as he gets older there is some sort of neurodiversity. My youngest also has *something* going on. This summer it has felt like a perfect storm at times, with both of them struggling and me, exhausted, trying to be the best parent I can be whilst running on empty.

I think both kids have found the change in routine hard and it’s been clear they’ve both been dysregulated at times. When I’m exhausted due to chronic illness, I can see the lack of attention they receive from me really exacerbates this, but there are times I simply cannot cope and have to retire to the bedroom for sensory breaks. Chronic illness truly sucks for everyone.

For the last almost 2 weeks, I’ve been in a really bad chronic illness crash and have barely been functioning, I’m slowly emerging from that now and clawing my way back to my normal.

Overall, I can say we had a really great summer and I thoroughly enjoyed spending time with my kids, as well as all the time we spent with friends and family. Although it’s been tough at times, I think we had far more positive times, lots of laughter and fun and some beautiful memories made.

Now we are entering a new chapter, as my youngest slowly transitions into Reception and I try to get back into work life and try once again to find that difficult home/work balance.
I’ll be back on social media and going to SEND events and I really look forward to meeting as many families as I can this year 🙂