Best laid plans

So this time last year both of our families were lucky enough to go on the Destination Dreams holiday to Orlando with Caudwell Children.

I say lucky but actually the criteria is a bit shit – “Life threatened, life limited” etc. Not really the sort of boxes you want you tick. But anyway. There we were. And it was amazing. The purple people are genuinely the most helpful people ever, apart from the volunteers at Give Kids The World who I think made me and Little mama cry within 5 minutes of their induction/ arrival/ meeting thingy. That trip is a blog in itself, but as I was ” on a break” as they say you’ll just have to imagine how great it was. Oh all right then here’s a photo …

Many of the families who we stayed in touch with from the trip are feeling pretty low at the minute. Poorly children, the busy festive season, and a desire to be back there where we were packed into a little bubble of purpleness. No hospital appointments, no phone calls, no battles, just being surrounded by individuals who wanted to help, and would bend over backwards to make your life a little bit easier for that one special week. We spent the stay making memories and enjoying time as a family ( which can be very hard to do in our “normal” life). Towards the end of the stay we began to talk more, open up, and speak with other families. We made some excellent friends, as did Thea. ( I won’t blog about those families as I haven’t checked it’s ok). The only difficult part of the trip was the flight. Nate on a plane? More like “snakes on plane” but with less Samuel L Jackson, or snakes. Anyway it was tricky.

It’s difficult to describe just how amazing the holiday was. Loads of people go to Orlando and do the parks, yeah it’s pricey but it’s not a big deal. I struggle for words when I think about our stay there. Put it this way I have cried today at the following things:

  • opening a bag of decorations and finding these lights
  • listening to a compilation of Christmas songs and carols on my phone as we put up the tree which reminded me of the amazing carol singers at GKTW ( which I also cried at)
    And then later finding Little mamas Hugh is in hospital again.

We have known each other for years me and little mama. Firstly as the mothers of children with undiagnosed conditions, then as volunteers for SWAN UK, but this trip was the first time our families had met.

Luckily they got on ( thank fuck). And so we made arrangements for the Murphy family to come up and stay with us this weekend, during the time that last year we would have been together in Florida. A great idea. But sadly not to be. Nate started projectile vomiting Thursday morning, followed by his sister in the early hours of Friday morning. Both myself and Michael then took ill. Nate wasn’t improving and wouldn’t tolerate food through his gastrostomy or jejunostomy. Dioralyte was just about ok but he had to be checked by community nurses and then stay for observation in hospital. He may have required total gut rest and an IV if blood continued to be found in his stomach aspirate. As with all bugs it’s not “just a bug” for Nate. We managed to escape hospital but were clearly a bit contagious. Then the next day Hugh started with his horrendous seizures. See here for more details.

All of which brings home how “lucky” we were to get to go last year. That the children were well enough to make the trip, and behaved while we were there. But it’s done. It’s over. We don’t get to go back. It was our “trip of a lifetime” and I’m very thankful we got to go when we did. It’s the turn of other families now.

A weird mix of jealous, lucky and sad is how I feel at the minute.

Plans are hard to make and so often come to nothing. We’ve all gotten used to the fact we may need to cancel on trips/ people/ events at the last minute but cancelling this get together felt even more utterly shit. We needed the meet, the wine, and the laughs.

Any escape would be pretty brilliant about now actually.

*drinks more wine*

A little bit about us and the Murphy family, who are found at



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