When the sun shines in Northern Ireland there is no place in the world like it – and for the last week and more we have been having the most glorious weather with blue skies, sun shining, fluffy white clouds, balmy evenings…proper summer weather which we don’t often get!
And as beautiful as it is and as much as we all enjoy it, it does bring some difficulties too when it comes to Lucia’s Lymphoedema. Physically we have noticed her right foot in particular has been a lot more swollen with the heat and by the end of the day her ankle and leg are also carrying more fluid and even feels heavier to the touch. Thankfully she doesn’t feel any pain with the extra swelling but her energy levels and resilience are definitely a bit lower as her body tries to cope.
I have been really focussing her treatment on her foot and ankle to try and get this fluid moving so we have had longer sessions with the Physio Touch machine, which can also impact on her energy levels. We have also tried to get her to drink more water to keep her well hydrated (my mum manages this with her much better than me!).
And the knock on effect of her foot and ankle being more swollen means her footwear is tough to get on in the morning and then uncomfortable until her little foot adjusts.
So as you can imagine this has been quite tough to manage physically and mentally as it is always a worry when her swelling increases. Although at least on this occasion we know why, as much of the time when her swelling increases we have no idea of the cause.
Compression and heat
Also very much on my mind is the fact that Lucia has to wear her compression garments during this heat and how that makes her feel. Imagine having to get squeezed into a pair of very tight, thick and heavy tights while the temperature outside soars. Imagine being six years old and already being warm and sweaty before even getting these on. It’s absolutely rotten and just so so unfair that she has to endure this.
And, as she is getting older and understanding things more and more we are having to reason with her a bit more, explain to her more and compromise with her more.
On the second day of the lovely weather I was getting her ready for school and she asked if she could wear socks like all the other girls because it was too warm for her tights. My heart did break a little bit in that moment as I tried to think of the best way to answer this question.
So I said something along the lines of – I know it can be warm wearing your tights but we have to always remember the important job they do. And then I asked her to explain to me why she needs them. She answered with, because I have Lymphoedema and they help me – amazing.
But on that day she just wanted to be like everyone else and asked over and over again to please wear socks – just for one day and she would wear her tights the next day. ‘Please, please, please, please, please mummy. Just to be like my friends.’
I wanted nothing more than to say, ok sweetheart…just for today as I held back the tears. But of course I couldn’t. She needs her compression even more in the heat to try and maintain her swelling. And what happened if she fell in the playground and cut herself?
I held her close and again reminded her of how important her compression tights are – and as a compromise agreed that we would take them off a little earlier than normal later in the day so she could enjoy some bare leg time in the sunshine.
There have been a few other moments like this recently as her little mind is just ticking things over – so myself and Daryn have just tried to be gentle with her, allowed her to feel these emotions, listened to her, explained things to her and just tried to understand how she is feeling. Which, in all honesty is so hard, because the reality is we don’t know how she is feeling.
However, these moments have came and went. Lucia has expressed her feelings and then been amazing by accepting some compromise and then just getting on with things. Her strength and resilience still astounds us when we go through periods like this. I am totally aware that these sorts of feelings will more than likely become more frequent and more difficult to manage as she gets older, so all we can do is just to find the best way to deal with the situations as they arise and to try and help her feel in control as much as possible. Like we are at the minute.
I, on the other hand, have a churning stomach and my heart hurts for her. I feel like I think about the unfairness constantly at the minute.
I know it might not seem like that big a deal to some – but to her, to me and to us it really is at times. I want her to be able to wear socks and enjoy bare legs like her friends. I don’t want her feeling frustrated by her tights when the weather is warm – to feel constricted and different. It’s just not fair.
And last week as I put on a skirt with bare legs and sandals for the first time this year I stopped and could have cried. Why should I get to have bare legs and feet on a sunny day when Lucia can’t? How is that fair? Why am I allowed to stay cool while she has to sweat? I didn’t even want to go downstairs for her to see me because I felt so guilty.
I also feel it when I grab Max a pair of shorts and tshirt to wear in one hand while my other hand grabs Lucia a summer dress but paired with a pair of thick tights. It’s not fair.
I see other children at school or in the park enjoying bare legs and feet in the sunshine – a basic right really. Something so small but taken so much for granted and I think how lucky they are and how it’s not fair.
It’s not fair
In case you hadn’t noticed I have said ‘it’s not fair’ approximately 43 times! But I do try not to dwell on it too much or for too long. Thankfully life is so crazy busy that it doesn’t really let me. It will always be in my head and some days it lingers longer than others – but I do try to shake it off. Because this is how I am feeling. Me. Not Lucia (most of the time). She has her moments which are completely understandable – but right now she is finding a way of getting through these moments with our help and getting on with things, so I have to try as well. But I am her mummy so I also have to allow myself to feel this way, but not let it take over.
So we have made the most of the weather through compromise. Tights on a wee bit later at the weekend and off a wee bit earlier later that day. Extra treatment. Plenty of elevation. Hydration. And lots of fun in the garden with Max playing football, splashing in the paddling pool, running, jumping, dancing and squealing with laughter. Because that is what we do best.