Declan’s Diary
Sitting on the floor, I look up at Declan, wearing his ventilator, looking into space, or the back of a train seat, a train that was heading to London that I was sat on the floor next to Declan on, unable to take the seat a few meters away as I would be too far away to help him. We were heading to neuromuscular complex care centre at Queens Square hospital London, for his annual MOT.
On arrival at St Pancras Station we waited once everyone had left the train for a ramp to be put between the platform and the train so that Declan could depart. From there we joined the queue for a taxi and to Declans surprise, he drove hassle free into an electric black cab, without the driver stating his ‘ramp was broken’ or ‘there won’t be enough headroom’.
Shortly after, we pulled up outside the hospital and took the lift to the familiar settings of the NMCCC to be welcomed by Declan’s consultant, a lovely, mid fifties lady who always welcomes us both with a beautiful smile. She has seen Declan grow from a frightened teenager, who would barely talk to her at these appointments as the fear of what the test may uncover took over his normal chatty personality, to a articulate young man, who felt comforted by her knowledge of Duchenne Muscular Dystrophy and his needs.
After an hour’s catch up the tests began, all finished with a visit to the phlebotomy clinic, as even the doctors on the ward couldn’t manage to get blood from him. We haven’t received all the results yet, many symptoms of Declan’s condition show obvious decline, such as his inability to now use his phone or assist with hoisting by pressing the buttons on the control, however what his heart and lungs are doing are a lot more difficult to predict. We both know there is a decline as he uses his ventilator more regularly in the day now, but we will need all the results to come back before we have a clear picture. Declan’s consultant did however say, from what she could see there was no significant change, which is more than enough for us to celebrate.
So late afternoon we headed to the London Eye, unfortunately just missing the last ride, the smell of a near by restaurant called us in, where we sat and ordered some Italian food.
We laughed and chatted about the day and enjoyed a tasty meal, me feeding Declan, then quickly having a mouthful of my own food, whilst the quiet mermer of his ventilator reassured him that whilst wearing it, he was less lightly to aspirate on his food. Before heading back to the train station we popped into the disabled toilet and then asked to pay the bill. To our amazement we were told “the couple that were sat behind you paid for your meal, they didn’t want you to know”. Tears filled my eyes with acknowledgement of their kind gesture, in a city were people barely notice Declan to not bump into him, a couple had noticed him, taken him into their hearts and made a gesture that neither of us will ever forget.
Dec has a love of photography, although I have to be his arms to take the photos, all under his instruction, he then edits the pictures on his laptop, here are a few of his London pictures.