13 August – My intention is not to cause distress, but to share our journey

13 August – My intention is not to cause distress, but to share our journey

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My anxiety is high, my breaths are shallow……
My heart and soul are being looked after by the fabulous ladies at the Seraphina Centre. Thank you Sue for the last couple of days…..

Mike’s working from home, and he’s feeling “wobbly”. He struggles with this day more than the 21st. It was our last day of being a regular family. Enjoying buckets of fun with loved ones…..

I know my posts are upsetting as we all know whats coming…my intention is not to cause distress, but to share our journey so that if ever you are asked, you know from Mummy what we are doing, why and how… it also fills my heart with warmth to know that you are there for us and you all care so very much…. on my difficult days it’s like all that emotion can be fired out to cyber space and disintegrate into zillions of pieces… making it all more bearable to carry and knowing that you are on the end of those zillion pieces saying… it’s ok…. we are sending virtual hugs back to you all… together we can do this….. Thank you for being there for us.. for the good, the bad and the ugliest.

An excerpt from Reuben’s journey by Mummy – 13th August 2012

The next day we all headed out to a local theme park. Reuben had a great time. He was with his cousins, his big brother and his friend Callum. He took to the rides and went through the maze, he climbed on the outdoor equipment and panned for Gold. He gave Sam a high 5 as Sam hit his first hole in one on the crazy golf. We didn’t get 50p back on the golf ball because Reuben wouldn’t give it back….
(This bit really makes me smile…)

That night we all headed back and enjoyed a barbecue, where Reuben still had his appetite and if I’m honest, he probably ate one too many sausage… as he paraded around the garden shouting sausage, sausage…. mmmmm sausage….
Later that night, i put Reuben to bed…. we were still all in the garden and Reuben settled down to sleep, or so we thought…. from inside the tent came this barrage of song… “oh na na what’s my name, oh na na what’s my name”… we all started laughing… for Mike and i, this was nothing out of the ordinary.. if Reuben couldn’t sleep he would often burst into song and sometimes this could last intermittently for a couple of hours… then he started humming his favourite holiday song from Turkey…. This was to be our final night with our boy………..

2 Responses to “13 August – My intention is not to cause distress, but to share our journey”

  1. Linda and Alan

    Dear NIc

    A big hug for you all – give Mike a extra special one – we are retiring next year so will endeavour to fund raise for you have some ideas which I will bounce off you nearer the time.

    Love to you all during this poignant time

    Linda and Alan

    • Alison

      Many thanks both of you it is Ali here I will pass your message on to Nicola, Mike & Isaac.

      Thanks for your ongoing support.



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