With a trip to London for M’s GOSH appointment an unavoidable part of the Easter holidays, we decided to make the best of it and spend a few days there on our very own mini city-break. In preparation we spent one Sunday afternoon leafing through the pages of Mike’s “501 Days Out” book, looking for inspiration for what we could do during our stay and G and M quickly filled a sheet of A4 with their suggestions. It was left to Mike and me to make the final cut and hone our plans and, despite desperate requests for Legoland Windsor and Chessington World of Adventures, we decided to stick to those attractions within a reasonable distance of where we’d be staying and drew up a list that felt exhausting just looking at it.
This epic event was our first overnight stay away from home since M had his tube back in December and I drew up thousands…hundreds…well one very long list of everything I needed to do in preparation. My first job, once our trains were booked, was to find somewhere to stay that would meet all of our requirements. Usually we choose to stay in one of the Premier Inn hotels on the south-side of the Thames, be it near the London Eye or closer to Southwark Cathedral and find them a great base for walking, or using the underground, to almost anywhere we’re intending to visit. Unfortunately, leaving the actual booking to a little late in the day meant that none of our usual suspects of hotels was available for the 3 nights we were planning to stay and instead I had to search for a suitable alternative. Whilst browsing frantically looking for a room at the….an….any inn, I came across the option of a serviced apartment and things suddenly started to fall into place.
We chose a one-bed apartment in East Aldgate, not too far from the Tower of London and easy walking distance from the nearest tube station. The benefits seemed huge:
- with a separate bedroom and pull-out bed in the living area, G would be able to go to sleep at a reasonable time, whilst M played his usual night-owl games
- there would be plenty of space to store all of M’s medical gear as well as the supply of safe foods for both him and G that we would take with us
- having a kitchen meant we could easily prepare M’s feeds, make packed lunches and even cook dinner, thereby covering every possible meal-time option we might face
- it also meant we would have a fridge to keep cooked meats, cheese for G and M’s feeds in overnight without the need to request one beforehand and then keeping our fingers crossed it would be available when we checked in
- finally, we would have a quiet place to retreat to when things got too much or the children needed some down time in the middle of the day
So it was an easy decision to get that apartment booked. The days flew past until finally I had no choice but to tackle the task of packing for our trip. By the time I had everything I needed for M in the case, plus our supply of safe foods for both G and M, I was beginning to wonder whether I’d have room for any of the clothes the 4 of us would need for 4 days in London. With some canny packing and careful choices about exactly what was necessary, I just about squeezed everything in and we were ready for our next big adventure.
7 years to diagnosis 