teddington trust

Staying out of the shade…

Bitter Sweet

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After learning of Eddison`s diagnosis we found much information on the internet about the condition and prognosis but very little about the everyday practicalities of actually living with the condition and how to go about finding a new `normal` and the everyday adaptions required. So in September 2012 we started writing this blog for two main reasons; one in the hope that it might reach some other families going through the same things with whom we could share our experiences, and two that it would help raise awareness about a little known of condition allowing people access into the more difficult to deal with sides of the condition, but more importantly focusing on what is possible and the positives we can take from it.

A side result of it, has been that it has given us an opportunity to outlet some of our emotions which has been extremely beneficial to us as a family.

We have always kept these light and tried to write them from Eddison`s perspective, which I know many of your have enjoyed having a giggle at, however we have always been mindful that at an appropriate time our wonderful, bright little man would have his own things to say and we would revert this to him, change perspective, or stop altogether.

And so today, after a very bitter sweet moment we decided that whilst Eddison is not ready for his own blog (tee hee), he is growing into a very independent little boy and its time for Mummy and Daddy`s voice and perspective to take the fore about our family experiences until he can speak for himself.

So here we go….this is how is happened…

After what seems like months of rain, finally we have been able to start enjoying some dry days, however with spring edging winter out this also means the inevitable warmer weather. This afternoon I managed to head out to the garden with both boys for a little potter around, and before long Eddison had moved all his ride on cars outside, along with his train set and keyboard! We enjoyed a lovely time outside which included a recital from Eddison on his keyboard whilst sat on his stage (aka, the sumerhouse steps!)

Playing Trains

Playing Trains

Out for a spin

Out for a spin

After about 40 minutes Eddison came to me and said “Mummy I am hot, I want to go inside”. I asked if he was ok and told him we would all head in, and just to give me 5 minutes to round up the toys and baby Raife. He turned to me and said “it`s ok, Raife can stay outside, I will go in to my Inside Outside by myself” (what he calls his Indoor Garden) and with that he trotted inside, shut the door behind himself, took off his bits and jumped on his indoor swing.

To say I was speechless is an understatement, I thought my heart was going to burst out of my chest. I have been dreading the first time when the inevitable happened and we would have to work around the boys being separated by the weather (one in, one out), and I don`t think I will ever forget that moment this afternoon, when I stood watching Raife run up and down the slide, while Eddison`s swung away inside beaming out at us!

Inside Outside

Inside Outside

At only 3 years old, to have that level of understanding of his own needs, but also incredibly to be so thoughtful of his brother I find it incredible and I couldn’t be more proud of my gorgeous, thoughtful, patient little boy; and also I could not be more proud of baby Raife, who after a few minutes decided that it`s more fun being together and walked up to the door blowing faces at Eddison through the glass before marching in himself to join his brother on the swing.

Today feels very much like the start of the next phase of dealing with XP as Eddison takes a big jump from baby/toddler to little boy.

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One thought on “Bitter Sweet

  1. Once again I find myself wanting to say something along the lines of how lucky Eddison is, if he must have this cruel condition, to have you as his family! It’s really hard to put what I feel into words without sounding trite or as if I don’t appreciate how hard life is for all of you – but you guys sure do know how to make the very best of any situation! I sincerely believe that Eddison is just so lucky to have you – and of course you are lucky to have him because he is such an absolute delight. You must have been chosen to be the special family you are to be an inspiration not just to the XP community but to all of us!

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