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Merry Christmas from all of us and Zack wherever he may be decorating his tree.

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Of all the seasons Christmas was the one which Zack absolutely adored. Most likely it was the lights, so many lovely lights all over his world. He also loved the presents, he thought all presents were for him, no matter whose birthday or occasion we were celebrating, all presents (and claps) were for him.

But this year will be different for all of us. This will be one of the many firsts we have to greet and most likely one of the difficult following Zack’s death in April of this year.

We are a mere family of four (well eight if you count the three cats and one dog). There is myself, Lindsey, my partner Dan, our youngest daughter Scarlett and of course our wonderful boy Zack.

Zack was born in February of 2009, starved of oxygen during his birth he had complex needs. He had cerebral palsy, was nonverbal and non-mobile, epilepsy, visual impairment and was fed via Mic-key button in his stomach. Despite these circumstances and right up until the last year of his life Zack lived and enjoyed a very loved, exciting life of adventure. We were determined to not hold back with him, a disability was not going to be a barrier to our determination to live fully. And he did, enjoying holidays, family events, school (maybe not so much that), swimming, walks in the park, meeting new people, making new friends and of course Christmas.

As with many families across the UK we have our own little traditions at Christmas. There would be the Christmas music on as we put up the decorations and admired Zack’s latest Christmas bauble from school. Zack would laugh and smile mesmerised by the tree lights. There would be many, many cuddles and Christmas films in front of the fire, tastes of hot chocolate on the tongue (PEG fed remember), walks in the brisk cold air and on occasion visits to events that illuminated an entire park with lights.

This idyllic festivity (and I feel like I’m starting to sound like a Hallmark film here) was always on a tightrope. Because with Christmas came the cold season and flu season and we were always balanced with a “oh I hope he doesn’t get sick before Christmas worry”. Or a ”he sounds a bit chesty best to get him checked out”. You see, for Zack, a mere cold could result in a chest infection and towards the end of his life there were many hospital admissions due to this.

I know there are families out there who will have to or have completed a Christmas in hospital and it must be so hard but we as parents of children with disabilities or severe health conditions will always make the best of whatever situation we are in. Ultimately we have hope and hope breeds strength which leads to willing any form of positive happiness into all dark situations.

And now we find ourselves in our darkest part of life. Zack’s loss has stripped our family of a complete heartbeat. Yet in these darkest of times I can close my eyes and see him, not just his face but his light which shone ever so brightly. So Christmas now, whilst we will still continue our family traditions, we will also add new ones. We will buy a very special ornament for the tree, we will place all of Zack’s dodgy school baubles on its branches and we will light a candle in his memory. He will always see our lights but they will burn most brightly at Christmas time when the world is alight with kindness and joy.

Merry Christmas from all of us and Zack wherever he may be decorating his tree.

If you want to read more about Zack’s life please visit our blog

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