‘Holidays’. It’s such a lovely concept. Get away from the everyday worries and stresses. Have a break. As it turned out, our recent holiday to the beach was everything except this and it made me stop and think, ‘How DO you have a holiday with cystic fibrosis?’.
My husband Stephen and I with our two children Liam (10) and Grace (9), both whom have CF, went away recently to enjoy the beach and some quality time together. Little did I realise how challenging this would be. We were at the end of the school break and nerves were a little frayed in our family unit with managing life in general along with the extra stress that CF often brings.
We embarked on our holiday with great anticipation, looking forward to some pressure-releasing fun and relaxation. It was a nice idea anyway.
As we settled into our time away, that initial anticipation slowly eroded and we sank into a routine of managing all the same stresses, just with the ‘cabin scene’ as a backdrop instead.
Each day seemed to be a seamless transition from those we had at home. Meals continued to be a battleground with Liam, often ending in tears or slammed doors, sometimes both. Anxiety and fear for the health of Liam and Grace were triggered just as always by rattling coughs and half-eaten dinners. Grace still needed antibiotics, Liam’s weight was still a concern, and the hot days still left him physically spent no matter how much salt he had.
CF was the companion we most wanted to escape that had packed its own bags anyway and arrogantly muscled its way into our cabin.
Never mind that we were at the beach.
Never mind that we were on ‘holiday’.
One morning as the kids collected shells on the shore, I sat down with Stephen on a sandy rock and I cried. I was worn out. The arguments, the frustration, the anxiety, and the sadness all felt so intrusive and misplaced here. This wasn’t how I was supposed to feel. These emotions don’t belong on holiday. Nestled into the crook of Stephen’s arm I could feel the relief of giving up the battle with these emotions.
Liam came towards us from the shore to show off his newfound treasures, ‘Are you ok Mum?’ he asked. I fleetingly considered a protective ‘I’m ok’ response, but remembered this was an intelligent and intuitive young man in front of me so I went for honesty.
‘I’m just feeling sad honey’, I replied. ‘About what?’ he asked tentatively. I sensed he may have had our argument about breakfast that morning in the forefront of his mind, so again I went for honesty.
‘I guess I feel sad about you and Grace having CF and all the things that you have to do for it, even when we’re away.’ I replied.
Well. How proud I am of this boy.
Saying nothing, he stepped towards me and wrapped those slight little arms around my neck and just held me. Honestly, he could have been the weight of a gorilla with the love I felt in those
arms in that moment.
There was a lightness to the rest of the day and these difficult emotions shifted to the background while we ran around a water park together and thought of nothing but the next trick on the
waterslide. It actually felt a little like being on holiday.
While this time away didn’t fulfill what we had anticipated, in some ways it gave us something more.
This time gave us nowhere to hide from our emotions or our challenges in supporting Liam and Grace with their health. It put a spotlight on some of our approaches to their CF care that had become dysfunctional and it gave us the space to consider how we could do things differently. We returned home with a shared goal to find more effective strategies.
Through all of this, I learned a few things about going on holidays.
I learned that it helps to let go (as much as you can) of your expectations that this will be a time without stress or worry. There may be stress AND worry and that’s ok. The important part is to prevent a layering of emotions that can occur and become difficult to manage.
If you are feeling frustrated, or sad, or angry, that’s ok. It’s important to acknowledge those emotions and allow them to just be. This can help process those difficult emotions without layering further distress over the top of them.
I also learned how important it is to be present in the moment that you are in. I am getting better at this. While we were away, Liam and I were in the water together swimming in one place against a current. All of my attention fell to that moment; the brilliant cool of the water, the sun’s heat on my face, the sound of Liam’s laughter, the spray of freckles on his sunlit face, and the simple joy that consumed us.
Yes, CF was still in our lives, and yes there were still painful emotions and thoughts that came with this, but my attention wasn’t placed on them in that moment. This is an example of mindfulness and it can be a very helpful and powerful tool.
So, to answer my own question, “How do you have a holiday with Cystic Fibrosis?”, I say: Manage your expectations. Allow your emotions to be present without fighting against them and be nurturing of yourself in this process. Practice mindfulness and bring your attention to the present moment wherever possible.
CF will be on holiday with you. Allow it to be there with all its baggage in tow. The more room you make for it, the less intrusive it will be.
By Kirsty Bowness
* This is a personal story and may not necessarily reflect the values of Cystic Fibrosis Community Care