I feel for my girls during the Summer Holidays, with their roles as Young Carers (something that I was not ready to accept they were till recently out of my own guilt. Admitting they were Young Carers meant I was some how failing them) they can not simply do they same activities as their friends, go the same places all the time and have the same selfish and carefree attitude that many kids their age have torwards the six weeks of ‘fun’.
I try not to burden them with Caring tasks, but they naturally help out. When Owen is upset they try and cheer him up, I ask them to keep an eye on him if I have to leave the room and to shout if his reflux hits again. They mainly have to sort themselves out between them if I am in the middle of something I can not pause.
But that is not what upsets me the most. It is more the fact of all the things they can’t do. Even a simple trip to the park can end in disaster if Owen is not in the right mood. I have tried to counter this. Owen seems to calm with his music on, so have been playing his playlist on my phone when out and about and it has been working. I Just brought Owen a little bluetooth speaker that can clip on to his Wheelchair we are yet to try it out.
Next week Alex is off work. We are not going on holiday this year so we wanted to plan lots of great days out. This was my task this morning. Yesterday I asked for beach ideas and many came up with some great ideas, some even had beach wheelchairs who many will know how much fun Owen had in these last year while in Cornwall.
This morning, as I am planning a day in London I was looking at train and Underground Stations with total no step access from entrance to train. The TFL Journey Planner said there was no such routes so I looked into each station, though I didn’t get much further than my home town. The lift a Watford Junction to the main platform to London is broken, on further investigation it seems that this needed lift has been broken for over a year. Instead of simply fixing the lift they now have a strange scheme of getting a taxi to pick you up from the front of the station drive around the back to the car park and getting you on the platform through a back way. This just seems wrong and stressful.
As I am only one pair of hands they have to step in and help with Owen and with each other. I have no other support on a day to day basis in the Summer Holidays. That is one of the reasons I am currently looking to employ a PA for Owen just a few hours a week just for that extra pair of hands. Yesterday the strain of lifting him and doing probably too many activities on the floor and up and down again took it’s tole on my knee ( Old injury from running in Feb) & I spent the evening miserable and in pain. It made me worry with a EVER increasingly growing boy.
*On another note we look like we are a tiny step closer to get Hoists fitted and the Bathroom extension done. As a visit was planned from a building company who will be completed the works along with a hoist company – though this was cancelled due to the boss being ill (one step forward to steps back)
I am really hoping that we can get to do some fab things on Alex’s week off and it all goes as smoothly as it can. I think we all deserve this at the very least. Especially my three amazing girls and my amazing boy.
*** Just to add before I go, I know I am guilty of posting lovely fun filled pictures on social media… but just make sure you know this is just a snap shot. The best photo of the day. A lot of hard work and planning has gone into being able to take such a photo and a little bit of luck. Please during the Summer Holidays do not feel pressure or guilt that your Summer Holiday pictures do not live up to those of others.
Comparison is the theif of joy
Find the joy in your day no matter how un flashy it maybe.