By keeping this blog we want to express and demonstrate how XP affects not only the patient and immediate family but also the wider family unit. As such we intend to feature a number of Guest Blogs from various family members to give them an opportunity to say anything they want about life post XP!
Our first Guest Blog is from one of Eddison`s Aunties, Auntie Becca who was one of the driving forces behind the conception of the Teddington Trust. This blog documents her recent visit…
“Friday: Today my youngest (Iris) and I are off down to Kent to see my sister and her family and I can’t wait. I am going to meet her newest bundle Raife for the first time and with only 10 weeks between them this will be the first time she meets Iris. It has been 8 months since I last saw them all. Since Eddison`s diagnosis they have not been able to travel the 600 miles to see any other their family.
It is wonderful to see her at the airport and she has brought Raife with her while Eddison stays at home with Dad. Nic is in her element this is the furthest she has been from the house in 8 months. She says it feels like a holiday just coming to the airport!!
With cuddles all round it’s off home to see Andrew and Ted (Eddison). I can’t wait to get some serious cuddles with Ted!
It is sooooo nice to be with them all and Eddison is now a proper toddler doing what all toddlers do, getting into mischief.
No rest a quick lunch and we are off to a sure start sensory room that is nearby. It’s one of only a few safe areas Ted can play without his protective gear on. He is so good getting ready. Getting sunscreen and a hat on my toddlers was difficult enough without gloves and a visor and then getting them to keep it on in the hot weather. But I doesn’t phase him and he waits till we are in the car (which has been filmed) before he takes off his visor.
Just as we are pulling out a guy stops us to ask for directions. Ted has now taken off his stuff so we are in a dilemma do we drive off and look rude or open the window and put Ted at risk. Just another everyday occurrence that catches you unawares. Makes us think she could do with a sign she can hold up to the window to explain. Makes us think what about if they were in an accident we really need something that would alert someone to his condition and what it means especially as hospital lights tend to be the worst type for burning him.
We make it to the sensory room which is fab. I am taking some pictures of them all when I suddenly realise the flash has gone off on the camera. Oh no what have I done? As it turns out camera flash is safe but it just shows even when you are trying to be really diligent it is so easy to slip up.
Saturday: This morning Nic, Andrew, Eddison and Raife are off swimming. The hydo therapy pool which is safe for Eddison to go to have offered them 12 1/2 hour slots when the pool is empty. This is great news as finding a safe pool is proving to be a challenge for them. While they are away Iris and I make the most of the mild Kent weather and go for a walk. Something we can’t do with Eddison as it is too warm at the moment for him to be out for a long time with his visor on.
Sunday: Hooray – today we get up and it’s nice and cool! We are taking Ted to the park. He has a blast on the swings and slide and the other little kiddies don’t seem phased by all his gear. It`s a tense visit for us adults, worrying about making sure his visor stays in place and gloves don`t come off, or clothes ride up, but thankfully Eddison seems totally unaware of our anxiety and just enjoys his short visit out!
All too soon our trip is over and although Nicola is coming up with the baby soon so that his 92 year old Great Grandmother can meet him I won’t see Eddison and Andrew now until Raifes’ christening in January when I come back down to them.
The whole trips reminds me of how much effort goes in to keeping Eddison safe, how restricted on a daily basis not only Eddison but also Nicola and Raife are in their ability to get out and about and how much we all miss spending time together.
50 sleeps to go!!!”