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Staying out of the shade…


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“At the Farm”

From the Eyes of Auntie Hannah 

Most families can relate to the importance of outdoor time with the kids, if not just for a nice change of scenery, also as an opportunity to let the little ones run off some steam. A two year old boy is, of course, particularly in need of this energetic time and our Eddison is no exception. This makes it especially difficult for my sister (Eddison’s Mummy) and my brother in law (Eddison’s Daddy), who are striving every day to develop and invent new ways to safely provide this for their son. There is no handbook or guide to being a parent of a child with XP, and there is little readily available information that advises parents of the continuous challenges they will undoubtedly face. Even the simplest changes to environment, weather, temperature and humidity make a huge difference to the activities that Eddison is able and free to enjoy. Therefore the job of Mum and Dad is one fraught with worry and a need to be ever alert to the pending risks to Eddison. Despite being increasingly mindful of the limitations faced daily and excellently creative in adapting experiences for Eddison, sometimes, even when the family think they have found a safe bet for him, a place to enjoy out of harm, something happens which threatens this…

Since his diagnosis, Eddison has enjoyed several trips to the local rare breeds’ farm that is situated quite near his home. This is a great day out which is near enough to allow the family to visit with minimal disruptions. Eddison is unable to enjoy other activities that are located further away in fear of being stuck far away from home without safe toilets he can use, safe facilities and even a place he can simply lift his visor to have a drink.

For this reason, the local farm has been a god send. The family have watched in joy as Eddison runs around the enclosures looking into the pens in amazement at the different animals. Togged up with his protective snow suit (not so fun on hot days), visor and gloves, Eddison is free to explore and interact with both the animals and other boys and girls. He is a real animal lover and recently has developed a real affinity for “Cows”….which he says repeatedly as he walks around the animal petting zone. He is gentle and loving to the animals, as he is to his own dog Macy. It gives his Mum and Dad such happiness to watch him experience these visits, oblivious to his condition and not being held back. Although, I know they do feel a little sad that, due to his special protective gloves, he is unable to feel the animals he strokes…especially the fluffy bunnies that he so loves. When Eddison is ready for a little half time refreshment, a spot of lunch and a drink, the family have found that the farm’s brilliant little restaurant is UV safe, rendering this a relatively stress free day for the family… Or so they thought! 

In light of those subtle environmental changes I mentioned and how they alter the activities available to Eddison, it seems that as the winter sun sits lower in the sky the restaurant no longer generates a ‘Zero’ reading on the light metre. Sadly this means Eddison cannot remove his visor to have lunch and the facility becomes unusable during these months. On our recent visit, we were disappointed to learn this, however, in a bid to continue our family day out and not allowing it to be ruined, Eddison’s Mummy was forced to think on her feet and hatched an ingenious plan that would allow us to enjoy a safe picnic lunch together. Mummy spied an empty marquee at the far end of the Farm, so she took the light metre to do a few readings. She tied up and opening in the canvas and found that the middle section of the marquee presented a ‘zero’ reading…RESULT!! So we pushed together some hay bales and a wonky chair we found, and ‘Hey Presto’…a quaint little picnic spot fit for all the family to enjoy. Daddy fetched some take-away lunch from the farm restaurant and we were set. Eddison could remove his visor and have a little breather. PERFECT..! Even baby Raife approved, as he smiled and chuckled at Grandad. Sat on bales, surrounded in squelchy mud and the faint whiff of “Cow Poo”, as Eddison would say…but, nothing was going to stop the Miller family from giving their boy a lovely and safe day out.At the Farm

 This little incident made me even more aware of the challenges the family face at every turn and even in situations which have previously been deemed safe, they can never relax. I admire so much the level of thought and creativity that goes into inventing experiences for Eddison and the constant need to be spontaneous and adaptable. This was indeed a day at the farm…but, with a difference…!!!!At the Farm 2

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It may be Shrove Tuesday but hence worth today will be known in our family as Snood Tuesday… 

It`s amazing how all Mother Nature`s subtle changes in the seasons have such importance to our household now. 

It`s been wonderful since the clocks went back, the ever earlier dark nights meant that after an early tea we could all go out to play for lots of fun time in the garden. Even on the coldest day we have been able to have so much fun in my night garden and my friend next door has even braved it so that she can keep me company on many a night. What fun we have had sliding, climbing and playing house……and oh the fun of hide and seek in the dark. Our Mummys find is especially hard, apparently toddlers are a bit tricky to find when we get into tiny little dark corners of the garden!! 

But sadly, the end of all this fun is in sight!!! The nights are starting to draw out at quite a rate now, and already over 1.5 hours has been knocked off our potential playtime before bed. Mummy says that when I am bigger I will be able to squeeze more time out of the season, but while I am still only a little boy my bedtime is important…..apparently I can only grow when I sleep……I am of course going to Google to check the validity of that statement one day but for the time being I will take her word for that!! 

It turns out though that Mummy and Daddy had a cunning plan up their sleeves in order that we can eek the last play opportunities out of the winter before the warm weather and light nights are upon us – A SNOOD (or full face balaclava) & GOGGLES!

 In seem out all the indoor games we have been playing with this funny hat has had a purpose, as today, after all Mummy and Daddy`s persistence I decided that actually I quite liked wearing it. 

Mummy and Daddy seized the moment and immediately threw me into my heavy duty snow suit, gloves and boots and before I knew it I was outside running around in the garden…….IN THE DAYLIGHT….just imagine that!!!!!

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What`s really exciting is that it also means that I can now go outside in the snow. As my visor is open at the bottom it makes being in the snow more dangerous as we have the worry of the UV reflecting up off the white snow under my visor. The snood and goggles, means that my face is fully protected in the snow, so now all I have to do is wait for the next dump of heavy snow which is very exciting.

 There are of course a few down sides and limitations, one; Mummy and Daddy can`t see my smiling face (but today my giggles more than made up for that), and two; overheating makes this option unsuitable for the warmer weather or for any real length of time. 

So as winter comes to an end and spring is around the corner we are doing all we can to make the most of life outside and having fun at every chance we have.

Fingers crossed Mummy and Daddy have another plan up their sleeves for our next season change, keeping us one step ahead of Mother Nature.