In 2012 when Eddison was diagnosed with XP the long nights that followed were spent with endless talk about how Andrew and I were going to build a `normal` life for Eddison; and a life filled with light and sunshine but without the sunshine!
An extensive list of “how will we” and “how will he” questions bombarded our thoughts, and pretty high up on that list was “how will he ever go to nursery or school?” It seemed unimaginable that he would ever be able to be accommodated in a mainstream setting, or that they would be able to ensure his safety.
But as the months went on, and we processed things, and indeed a new `normal` started to emerge we began to believe wholeheartedly that it could be possible and it would be possible. With this belief we started the quest to make the first step and secure Eddison and pre-school nursery place. With the right people behind us guiding, things started to happen and before long, in April 2014 Eddison started his pre-school year at our local mainstream nursery school along with his best friend Finlay.
It was a leap of faith for them to accept Eddison along with all the special measures that came with him and it must have seemed so very daunting for them, it certainly was for us. Yes, there have been hiccups along the way, and procedures have had to be modified and changes made to meet his evolving needs and understanding, but Eddison has enjoyed over a year of part time attendance at nursery which has been an invaluable source of interaction with other children and access to fun, play and learning.
And so, on the eve of his last every day at nursery, I am overwhelmed with emotion for what has been gained in this time and of course anxiety as we look to the chapter ahead. But without question one of the hardest parts of tomorrow will be watching him say goodbye to his incredible one-to-one Sue!
Sue has been one step behind him since the first day he trotted in wearing his hat, gloves and big smile hand-in-hand with Finlay and there she has stayed!
She has meticulously ensured that the nursery environment has continued to be safe for him.
She has encouraged his outside time and been his friend for exciting indoor play when he didn’t want to go out.
She has brought mud and mess into his nursery day and given him wonderful sensory experiences.
She has sat with him several times a day with patience and love to apply his cream in his own special way.
She has build his confidence to play and communicate with others outside and has given him extra care and assurances when he has gone through anxious periods.
She has worked so closely with Andrew and I to allay our ever constant fears and anxieties and has made it possible for us to walk out each time we leave him knowing that he is in the safest hands.
Eddison and Sue have a really beautiful bond, and as the only other person outside of our immediate family who has ever applied Eddisons cream and dressing, it shows and unbelievable level of trust between them.
So to the wonderful Sue, Andrew and I would like to say THANK YOU for taking such very good care of our baby and for allowing us to strive for his life of light and sunshine!
We also send our love and thanks to Abigail and the wonderful ladies at Kingsnorth Little Stars who all played a very active role in helping Sue. The walkie takies on the back door, his picture on light switches, the vigilance on the front door, was all noticed and very much appreciated by us on a daily basis – THANK YOU x x
All our Love, Nicola & Andrew x x x
Tomorrow Eddison and best friend Finlay will leave nursery for the very last time with the world of big school and all the fun, friendship and adventure that entails ahead of them, and we will watch with pride and ponder, “where did those little boys go”, and it`s just possible, the odd tear will be shed!
Look out Ducklings here they come!!!! Over to you Ms Smith and Ms Dowe x x