I always seem to start these posts with ‘it’s been a while’ – and it really has! Two months since the last post but we were just enjoying the summer holidays, the no routine and the time to just do what we wanted, when we wanted. And it was absolutely wonderful.
Summer time for us is very much a mixture of fun days out and relaxing ‘home days’ playing games and just chilling out together. I work a three day week – Monday to Wednesday – but throughout the summer I took quite a few Wednesdays off to make the most of the time with Max and Lucia. Daryn also took off days here and there, and the days we were both in the office, nana and grampy stepped in.
We know we are so fortunate to have my parents close by and able to look after our two little people and believe me – they get spoilt rotten! They enjoyed trips to the park, the cinema, the planetarium as well as days at home playing in the the garden and getting slightly competitive over junior monopoly! (Thanks mum and dad!)

At the theatre with nana and grampy
I think we definitely found that both Max and Lucia appreciated the holidays more this year, probably because they are a wee bit older (9 and 6). So they enjoyed the break from school, homework, football, swimming, dancing and everything else that goes on. They loved lazing around in the morning, staying in their pjs all day, getting all their toys out and just relaxing. And so did I!
At the beginning of the summer we all sat down and made a list of some of the places we would like to go and the list was pretty long! So we picked the top few things as priorities and tried to plan them in. As I said before those relaxing home days are pretty important and featured highly in our holidays.
The main reason for this was to ensure Lucia had plenty of rest in between days out as if she overdoes it, her swelling suffers, her energy levels plummet and she can be a very emotional (and grumpy!) little girl as her body tries to recover.
For example, Dublin Zoo was top of our list and we left the house at 8am to get the train and didn’t return home until 9pm. So the two days before we went to the zoo we had quiet home days and the two days after the same. We knew she would need to be well rested to take on a long day and would need proper recover time in the days that followed. (We all did!)
It was definitely a highlight for us all – the train journey, the zoo, the reptiles, eating dinner out and getting all sleepy on the train on the way home! I had brought cosy leggings and fleecy socks for Lucia so I could take her compression garments off for the home journey, as by then she had been in her compression for about 11 hours and was desperate to get them off. She then elevated her legs on me for the 90 minute train ride. We also brought the buggy to the zoo as we knew we would be walking for miles and Lucia’s legs do tire – and we can’t piggy back her for too long anymore!

Lovely giraffes!

Three extra rhinos in the zoo!
So busy days out essentially need planned around quiet days before and after, and this helps us to maintain Lucia’s condition.
We also visited numerous parks, climbed a mountain (couldn’t use the buggy here so the piggy back had to happen on the way down!), headed to the beach, went crab fishing and watched plenty of movies, played lots of board games and made slime in between!
We also spent a wonderful week in our most favourite place thanks to my friend’s parents who very kindly let us use their caravan again this year and spent most days (rain and wind included!) on the beach. Once again it was just wonderful to see Lucia able to play on the sand in bare feet and legs along with Max – something that most people just take for granted. Our hearts still leap when we see her reaction as she feels the sand between her toes, as those wee toes are always confined to her compression garments. She lies down and makes sand angels, rolls around and just squeals with joy! Along with Max, they ran in and out of the freezing water, jumped waves together, built sandcastles, buried their feet in the sand and climbed sand dunes. Pure freedom.

The joy of bare feet
This is a beach with the softest, cleanest sand, so very safe for Lucia to have bare feet and legs – but we are still vigilant for any dried up sea weed or stray pieces of shell, and Lucia is brilliant at keeping herself right. We also head straight back to the caravan (two minutes away) and put her into the shower and thoroughly wash her legs and feet before deeply moisturising her.
We also relaxed the compression garments a little during the holidays and on some of the days when we weren’t leaving the house we gave her a day off. Those days were spent elevating or sitting down so gravity wasn’t playing its usual part in her swelling.
Finally, Lucia also had some bandaging treatment carried out at her own request and managed 72 hours all wrapped up. We had the usual side effects including low energy and loss of appetite, but the beauty of doing it during the summer meant she had plenty of time to recover. Amazing girl!

When your big brother plays your favourite Frozen game because you are being so brave with your bandages!
So now September has well and truly kicked in, the dreaded routine is back, school is in full swing and we are just getting to grips with everything again. Next post will be how we are coping as we ease back into life in the fast lane!
I love reading your posts and seeing how happy Lucia is at experiencing the little things. I totally understand her reactions. I’m in my 40’s and got a bit down when I visited the beach with a friend recently and she was paddling in the sea as I walked (in thigh length compression and shoes) along the sand beside. I’m lucky that my Lymhoedema didn’t seem to develop until my teens though, so I did get the beach playtimes as a child without the constant worry.
Hope the change of routine went smoothly and the back to school blues have all gone now. 😉
Hi Lyn, thanks so much. It is lovely to hear people enjoy reading the posts. Sorry you were feeling down at the beach, it must be so hard as it is one of life’s simple pleasures that should be enjoyed. I totally understand and feel it through Lucia. Lovely you have the happy memories from childhood though, I’m sure they are very special to you – we hope Lucia has those too. We just stick to the one beach that we know is clean and safe and take all precautions we can. Routine is well and truly on the go though mornings are still a bit slow lol! Hope you are well and thanks for the comment x