Roger Waters starts the day, angrily barking out ‘Comfortably Numb’. I sit up, wait for the creaks and cracks, the assured sign my back is doing its own physio. Rising like some sort of shambling corpse. I yawn, grumble at the insanity of the hour and bark at Alexa to stop. My wife next to me is stirring, she fumbles for the switch for her Bipap machine and suddenly her sleeping oxygen supply is culled. After several comedic attempts at swinging out of bed, I blearily embrace another day.
Mornings! Every parent must have a routine. For parents like us, parents of a child with a disability, routine becomes more important than wine, if not, it must be close. This is the real life story of how our mornings roll-ish.
Downstairs, the lights from the charging wheelchair wink at me like a Carry On Femme Fatale, except in this mood the only thing that will turn me on is raw coffee. I turn the wheelchair into the hall and creep like Nosferatu to my daughters door. She is sleeping, beautiful and mine.
I break wind, cough and the other Alexa suddenly powers into relaxing pop. Stimulating me into semi consciousness. My daughter stirs, rubbing her nose, activating her Bipap alarm and the dog barks upstairs. Leaning over I gently kiss her forehead and thank all of creation for her being ours. Summoning up my 11 stone strength, I strain as I remove her bed wedges which I so easily put in place last night. She is alert, awake instantly, I am not. She smiles and the world is marvellous, I trip over the dog who has entered…Git
My wife’s entrance is marked by a trail of wind, accumulated by a night of digesting free oxygen and she enters the kitchen, forgetting she has already done a weeks worth of school uniform ironing. I raise Emily’s bed and I swap with my good lady who prepares to do the toilet routine for the morning. Suddenly the music is commanded by the youngest voice in the house to go full techno and metal and I worry what the neighbours will think.. but they are deaf.. and old… and fans of techno and metal.
(I am shamelessly advertising the Amazon Alexa kit that
Emily has in her room to make the techno noise)
I worry into the kitchen, fumble for the preferred cup for the Movicol. Trying to open the simplest packet at this unearthly hour is like trying to perform heart surgery on a bouncy castle in the dark with hands made of margarine. Once again the packet splits covering me in a fine powder that any passing policeman would take for a street value of a thousand pounds. Again I try, success! Three packets mixed with squash in a volume suitable to digest. Right, Movicol done, tablet and water, done, now to make lunch. Wait, how tired am I? Yep hot dinners at school it is.. again, brain cannot handle complex cheese grating this early.
The dishwasher looks at me like an open mouthed crockery graveyard, ‘ok, I’ll empty you, lazy bloody machine’. Next my wife enters throwing the bag containing the toileting stuff, she’s off the darts team as it slaps straight into the recycling bin. We hug, exchange a kiss, wind and illegible caffeine starved words. I prepare the breakfast things.
In the bedroom Ed Sheeran has arrived, with my daughter as backing vocals and her voice fills me with bliss and pride. Once my wife and her have negotiated the putting on of uniform (my most marvellous wife does cullottes, splints and shoes. Our amazing child does vest, top, lanyard and tie) tie? I’m 46 and have never learnt how to knot a tie..hippy.
Every morning for 12 years Emily has refused to down the Movicol as it tastes like “dust in pond water” but Robinson’s pond water I say. Eventually she drinks and swallows the tablet. Offering advent chocolate was no incentive to her whatsoever. I am a spectacled hypnotist. I bring in the wheelchair and my strong, no-nonsense child slides across into her chair.
Breakfast pancakes sizzle in the wakening kitchen, and in the bedroom, because of obeying the laws of dressing, and medicines, the grand prize of the mobile phone is handed over. I rummage for bland cereal, no patience for pancakes, good band name that. I sit to await the dog barking (again) that signals the arrival of school transport.
The minibus reverses into the drive, I go to open the door and realise I still have no trousers on, or top, or shoes, I look like the illegitimate son of Jacob Rees Mogg after a failed bomb disposal. My wife laughs, she looks stunning. After throwing on the worst assemblage of clothes ever seen, I am torn out of the house by the dog on the lead.
The wheelchair brakes are released and after the thousandth time of asking to ‘put the damn phone away’, I am joined by my beautiful daughter in the harsh, drizzly morning. No kisses goodbye, this is a pre-teen remember, a fist bump later and she ascends the ramp into the van. The most awake, amazing little person I know.
As I enter the house, joined by a pillow of leaves, I release the dog who sensibly goes back upstairs to bed.. Lazy bleeder. In the now egg and flour strewn kitchen, coffee and tea aromas flood around, bringing me to a half state of temporal grace. A cup is thrust into my hand, a kiss onto my dry lips and I am reminded that through all the trials, body rebellions and refusals, that I would not swap this life for any other. This existence, my family, my friends, you, reading this. Our days are different, a mixture of the comedic and the chaos, the pain and the pleasure, the wonder and the pride. This is just our story, and after all, aren’t we all just stories in the end?