Wednesday, 18 April 2012


We've booked a holiday. Not for six months or so, but come October half term, we'll be jetting off to Florida. It will, I think, be our last holiday there. Two girls getting bigger means two girls ever less comfortable with the flying, and ever harder to move around once we get there. Surgeries threatening, more physical complications looming, mean with or without surgery, more pain, more awkwardness, less ability to sit on a standard chair for the length of the flight. And ever more bits of equipment mean ever more hassle to pack, to get things in under the weight limits, and to organise the less portable bits of kit once we get to the other end.

So far, we've booked our flights and our hotel. We have conceded the need to pay extra for direct flights; this adds around £500 to each of our costs. The hotel is probably one we'd choose anyway; except that if I had two girls who could sleep through the night without waking and without needing noisy breathing equipment, we might have gone for just a room rather than a suite. Then again, it's nice not to have to sit quietly in a dark room once they're asleep, so perhaps I shouldn't charge that cost to them.

Big cheers to Virgin Atlantic; no charge for oxygen on board, a choice of two different travel chairs (that'll be the Burnett for Mog and the travel chair for tLP then please) again at no cost, bulkhead seating provided the seatbelts will accommodate the chairs, extra baggage allowance and extra carry on for all the equipment, and no problem if we choose to take tLP's tank rather than her manual chair. A dedicated number to call for any queries at all, detailed info about what we need to do for security on both sides, assistance booked and a huge feeling of "no problem" rather than "it's a nuisance but we'll do it I suppose." Only slight issue is that the airline will only give us an extra suitcase allowance on the way out, on the theory incontinence and feed supplies will be used up by the time we come back again. Which is fine, except that in that case, where will we put all our shopping?

For the first time on holiday, I'm considering hiring some equipment out there. We're going to need a commode seat of some kind, and a transformer. Oh, and oxygen. Not because we will need it (she is NOT allowed to be ill out there), but because if we don't have it, I just know that we will definitely need it. If we're hiring those already, do we push the boat out and treat ourselves to a nice hospital bed? It would be lovely to have something high enough not to have to bend down for every change.

Taxis or hire a WAV? Powerchair, and risk damaging it in flight, and risk it damaging other people in a fairly litigious country? Or manual chair and the need for pushers, and nowhere to hang all our equipment on days out? Powerchair and the need for a wheelchair accessible vehicle at all times, or manual chair and get away with taxis with a big boot? To drive or not to drive, that is the question?

And then there's the insurance. Last time we went, we paid £370 for a week; our friends paid £37 for the same week. It seems we've added one or two rather expensive conditions to the girls' various lists of diagnoses since last time we went. At £1200, the insurance is officially costing more than the flight and hotel for one child. As I said; I think this will be our last Big Holiday.

This being our last Big Trip, do we make it extra special? Anyone fancy swimming with dolphins? Or is a Character meal special enough? Asking the Little Princess; she is most excited not about meeting Princesses (done that!) nor about flying (done that too!) but about the fountains (very cute video). I'm impressed she remembers; but a little disappointed - we can do that right here in Abingdon! Perhaps the week in the gentle warm sun (you hear that, Floridians, we are ordering some Warm Weather in October please!) is special enough. I do know that last time we went in October, the last blast of decent sunlight saw us all through to the middle of winter very nicely.

So if this were your Last Big Thing (and don't worry, neither of the girls is in imminent danger of clog-popping; I'm just aware that the practicalities of life will be limiting all of us as we all get bigger), what wouldn't you want to miss? What would you? Or what other Big Things might you do instead once flying is no longer an option?



Anonymous said...

Sounds like fun--Sounds like you have put lots and lots of thought and planning into this already! Can't think of what I would suggest to add or do--unless it would be to visit Sea World if you haven't before.
We have been to Disney in Fl. with our special needs kids-twice--Both trips have been because of Make A Wish and we were able to stay at Give Kids the World Village--now that is the best part of the trip !! The villa's were very nice--spacious-etc--did not have to cook--they had activities and all for the kids etc. Could have spent the day there doing things instead of going out to one of the attractions.
I know you already have things worked out for the hotel--but wondering if you could somehow have one of the girls be able to have a wish--/dream that an organization over there would sponsor and then you would be able to stay at Give Kids the World--lots of different wish organizations use it.
PS from what you mentioned on CPSK--I'm thinking your time at Helen House should be soon. Enjoy--That is something we don't have here--we can pay others to do respite--even maybe have money that the kids can use to pay for that--but to have a place where we all go--and others care for the kids--etc isn't an option--there is a camp in several parts of the US that offer this--but it costs for all.

Trina and Jophie said...

OH Oh OH! Dolphins! You could even possibly see Winter from "The Dolphin Tale" Movie...Wish we could meet up :0)

Sharon said...

Longtime lurker here...I live about 15 minutes west of Disney and 15 minutes south of Sea World - I'll see what we can do about the weather ;-)

As someone else said, Sea World is wonderful. Part of Universal might be good for the girls as well - I'm thinking the Dr. Seuss land at Islands of Adventure - but a lot of their rides require transferring, as opposed to going on the ride, wheelchair and all.

Tia said...

I have stayed at GKTW a very long time ago (pre-hurricane) and isn't it wonderful? We loved it; made for a really special trip. I had thought about asking for a wish trip there, but Miss Mog has her own ideas for a wish, and I'm not sure what the Little Princess' would be just yet.

And yes, couldn't miss out on Sea World. We've gone there on our quieter days before; so peaceful to stand and watch the manatees drifting around. And stock up on funnel cakes, which is not something we get over here.

So much to do...

R said...

Personal opinion here which at least some people will object to; sorry in advance to those folk.

I think that swimming with captive dolphins is ethically dubious at the very best, and I'd never do it, take a loved one to do it or encourage anybody else to.

I've never been to the US but if nice weather is expected, how about a boat trip out from the coast to see dolphins and indeed whales *properly* - out in the ocean? We did this on what turned out to be my own Last Big Trip (I didn't know at the time) - New Zealand in 2004, I think. Seeing a group of juvenile sperm whales (a batchelor pod) playing a few miles off the coast of Kaikoura, and a few interactions with dolphins too, knocked spots off any human-controlled experience.

When I go away, even for one night, I have no choice but to hire a 'hospital' bed and pressure-relieving mattress. I always take the opportunity to get one that's ever so slightly comfier than the one I have at home. For a few weeks holiday, the cost of this is likely to be negligible compared to other expenses - not trivial, and it all adds up, but well worth it.

If you're hiring stuff, I can't encourage you enough to hire a track-hoist-on-legs, assuming you haven't found a hotel with a hoist room (Florida has a few). With a bit of cleverness you can probably fit both girls beds under one and it's SO MUCH easier than using a mobile hoist, especially with restricted space to move or thick carpet.

Tia said...

Thankfully we can still skip the hoist on holidays at the moment. Although little Miss 30kilos Mog may force me to revisit that sooner than I'd hoped! But hospital bed is definitely something I will be considering.

Not offended on the dolphins front; think you're probably right actually. Not sure ocean trip will be a possibility from where we are staying though. But; in our quest for alternatives which don't involve being tied to a chair designed for the mythical normal adult for hours on end, I'm looking at Scandinavian cruises. Fjords, icebergs, whales, and an accessible bed with you at all times, what's not to like (except the price...)?


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