Declan’s Diary

Walking down Melton Road, Declan and I were stopped by a lovely lady, whom we had never had the pleasure of meeting before, to ask how Declan was. She explained she always picked up the Syston Town News, flicking the pages to find ‘Declan’s Diary’, and had been concerned as she hadn’t came across it for months. My pen hasn’t touched paper for such a long time as I didn’t feel we had much to share, coupled up with having very little time to myself, due to providing the majority of Declan’s care, as sadly we were let down by his care company. It never occurred to me that this silence could indicate that something bad had happened, when in fact Declan is doing incredibly well.
Our little bubble provided more daily physio offering quite a bit of pain relief. We have also enjoyed box sets, making meals from across the world and thankfully since the weather has picked up, some lovely walks/drives. 
Unfortunately, during the last year we have lost our beloved ‘Dotty’, pictured left with Declan, who became Declan’s companion a few months after his diagnosis. She was a crazy cocker spaniel who provided love and laughter.
Another loss was Declan’s ability to drive. During his time shielding, his hands were never in the position to drive, leading to tightness of wrist and hand tendons. It was heart breaking to finally be able to go out and realise he could no longer manage to control the space drive system for the van. Although he defied the odds to be able to drive, this still hit him quite hard as it was a small bit of independence for him.
Some people feel their human rights have been taken away during the past sixteen months, not being able to go out spontaneously, public toilets being closed, unable to go into a friends house etc. This has been the norm for us, since Declan sadly lost the ability to walk. Duchenne Muscular Dystrophy has ruled our lives for the last fifteen years. 
Any time away from the house is a planned mission, to include emergency breathing equipment. It can never be spontaneous. Even disabled toilets can be inaccessible when cleaning equipment and boxes are stored there. Friends and family are unable to let you into their home, not due to a contagious virus or government rules, but a big step, a big slab of concrete acting as a barrier; or a patio door, with a small ridge, which will not accommodate a large battery on the bottom of your wheelchair which may as well be Mount Everest.
While exercise has been good for peoples physical and mental health, it’s impossible for Declan to even raise his arm from his wheelchair controller, because it would be like lifting the biggest weight in the gym.
The pandemic has brought extra stress, but Declan hasn’t taken to social media to moan about the injustice felt by many towards the government, even though he has become more isolated as a consequence. He is very aware of the fact that time is not on his side, and plans made last year, may not come to fruition for him, but while the sun is now shining, he will enjoy every second.
He has had bad days like us all, where there doesn’t seem to be a light at the end of the tunnel, a day when he can go into a pub for a meal, or watch a new film on the big screen. Most of the time he has took it on the chin, for the greater good of everyone. 
Covid has swept through the care system like a tsunami leaving many families with no respite providing twenty four hour care for their loved ones, with sleep being a luxury. These families have suffered in silence just trying to get through the day, then repeat.
Thankfully, things seem to be settling down now and we will soon be able to hug our friends and family again. Until then, stay safe and hang in there.
Alex