I love waking him up …
He’s warm and still and his eyes light up when I enter the room. He sleeps on his front so I take time to help him turn over – his muscles are stiff in the morning and need gentle cajoling.
I change him and remove his pyjamas and sheets for washing (a daily job) and then start to dress him for the day.
If it’s a college day, it’s easy, if not, he will choose an outfit to suit whatever ‘job’ he is going to do. He likes to ‘role play’ – he might be washing cars (old clothes), fixing radiators (his Dad’s gas engineer uniform), or ‘work’ as a landscape gardener (his Uncle’s business) so the outfit has to be right.
The role play drawer gets more and more packed.
Then it’s time to lift him into his wheelchair, put on his shoes and strap his feet and waist belt before cleaning his teeth, and brushing his hair.
It’s the same every morning. He’ll come downstairs in his lift while I prepare his epilepsy medication and tea. Breakfast is always challenging – he will often refuse but not eating causes seizures so I persevere.
And a seizure early in the day is never a good sign. There will inevitably be more …
Then the day begins.
Role playing has become a way of life for him and while it makes him happy, it’s difficult to distract him into other activities. So, we wash cars, fix radiators, paint fences.
13 weeks of lockdown have us the cleanest cars ever!
After three hours, it’s usually time to change him, so it’s upstairs and time to lift him out of the chair. He likes to eat more during the day so lunch will be something hot and filling – pasta and pesto is a life saver!
Afternoons are often hard to fill – more role playing but a walk or a drive often helps.
Then another mid-afternoon change before an early dinner.
The evening routine reversed that of the morning. Out of 5e chair, undress him, hoist him into his shower chair, shower him, hoist him back into bed. Then it’s medicine time again.
This is the time when I generally lie on the floor – there’s no space for a chair in his room given his need to manoeuvre his chair around.
I watch him as he listens to music – punk, rock, he has an eclectic music taste and becomes alive with music.
Then it’s time to lift him back into his toilet chair, clean his teeth and wash his face (none of which he likes!).
Eat, sleep, repeat … the daily role of a carer never changes.
The routine that makes you want to scream keeps him calm and makes his daily struggles more bearable.
So, you go on, and on, hoping that everything you do makes his life happier and nearer to the one you know and understand.
That’s all you can do. Being the mother of a disabled child is like living two lives: your own and the one you want your child to have. It’s isolating, repetitive and often frustrating but his smile, when he is tucked in at night is everything.
CK July 2020