This wonderful guy was the nurse who came to our hotel to withdraw his blood for shipping to Oklahoma. He was fantastic with Cameron, he left us his phone number & email so we could contact him again next week when we were back, he said he would come and do whatever bloods we needed to save Cameron the stress of having to go to the blood lab. I'm truly truly in shock, I can't take it in. Ray set off on a 10 hour drive this morning to administer IVIG to a child and was found slumped over his steering wheel at an intersection a few hours later. What a loss to everyone, the children he treated, his colleagues & friends but most of all his family. The 'Ray of Hope' foundation is an extremely fitting tribute to a sincerely dedicated nurse. Godbless Ray xx
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So quite a welcome home from holiday!! We are being put up in a hotel because our house is a no go area, it flooded while we were away and it's not liveable, ceilings down, carpets ruined, no water or electric and a high asbestos risk....... Needless to say Cameron was in free fall and we had to get him off site immediately. On a nicer note, there was an invitation to the Hillsborough Garden Party in the post! We are away at a wedding in Cavan tomorrow, and I'm still trying to finalise plans for our USA/Toronto trip, which we leave for on Sunday!!!!! Trying to keep smiling aren't we Jonny Lindsay! This mum must live in my mind, every word of this resonates. It's uncanny......I could have written it http://themighty.com/2015/08/when-youre-in-between-being-a-special-needs-mom-and-a-typical-mom/ The amazing Amanda Voss-Rourke breaking the world record for sit ups in an hour!! All in aid of of Cameron's fund! We have been off the radar for a while because we are staying with friends in France, we needed to get away from everything for a bit, gather our heads for the impending trip to the USA. It is brilliant being able to spend time as a family as that is something that we get precious little off at home! Cameron has been doing well since we've been here, but it's the perfect location for him - we are in a forest, away from everything and we've not moved from the house & pool! So it's quiet, peaceful and not too many people for him, as stress free as we can make it :-) We are gathering tonight for a party with neighbours and what a beautiful night for it! Huge thank you to Anouck & Pierric for opening their house up to us for our stay. I can honestly say I don't want to be anywhere else in the world right now. I could sit and content myself with this view forever, it's impossible to say how much this place means to me. It's not been a great day today, my beauty boy has not coped well with daily life today, he's on the sofa at the moment, very sore but very distressed about life. And, unfortunately that means for us, a day of walking on egg shells & punches reigning down on us. It's so hard to explain what it feels like to stand by so helplessly while he crumbles because he can't cut up his dinner with his knife and fork, when he asks "how do I eat this?", but when you approach to help you make it 10 times worse....... But then I retreat out here, and I drink in the view, I listen to the sound of the sea, the birds and I watch the seal pop up again to say hello, and I breath....... Beginning a busy day at the office! 53 items on the 'to-do' list today!! Lots to co-ordinate and plan this week before we go away next week. There are 5 fundraising events over the next couple of weeks which I need to deliver pop up stands, buckets & flyers for. Still lots of USA/Canada trip planning to do. And still need to sort Cameron's return to school (his educational statement arrived this week), not to mention missy needing coached for aqe in October!!!! A list of people I have to email & phone in at least 4 different countries & numerous folk to call on to collect donations.....Wee buns, who needs sleep!! Lol!! I'll not be moving off this seat this week! Well at least the view isn't bad :-) |
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December 2015
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