For me becoming a parent has involved changes, insights and rewards.
Here’s my A-Z of Parenting a son living with complex disabilities and life-limiting epilepsy.
A is for
Adaptations including changing routine, adapting clothing, moving to a bungalow or adjusting my dreams; one thing is true, I had to adapt.
Body building Arnold Schwarzenegger watch out! My new lifestyle is developing my pecks and toning my abs. I lift and move my growing boy when I know I should be using a hoist.
Clinic letters unsuspectingly arrive on the door mat with their long medical words and diagnoses. Both of which seem much harder to swallow when seen in black and white.
Drugs in abundance force me to learn how to calculate, administer and pronounce previously unheard of medicines.
Equipment of all shapes and sizes come into my home. It begins as a slow trickle with items resembling torture apparatus sitting innocently beside my dining room table. Then, before long, standing frames, walkers, wheelchairs and milk pumps simply become part of the furniture.
Family and Friends have always been important but now they play an essential part in my family’s pit crew. They help keep my family’s engine ticking over while offering me an essential cup of tea and the space to share my heartbreak and joy.
God is where I turn to be angry, be real and be grateful. Thankful for every day, every smile, every milestone and each precious moment. If God isn’t your thing then just creating some time and space to reflect and be honest is still a great habit.
Hospitals with their appointments, admissions and investigations become like the familiar home of a not too distant relative.
Inaccessibility and isolation hang around like a bad smell. As steps, sand and steep hills stop us doing stuff that other families seem to take for granted.
Just getting going… J is for
Juggling like a well trained circus act. Parenting requires me to clown about. I try to keep the medications, cooking, laundry and whole family’s needs in a well coordinated garland in the air.
Knackered is how I feel most days. Disturbed nights lead to sleep deprivation and days that feel as though I’m walking through treacle.
Love and lots of it. A parent’s love is big, strong, potent and powerful.
Memories From the harrowing life-threatening fit to the precious cuddle at the end of a day. All are tucked away in the depths of my mind. Like coal and diamonds they lay dormant and ready to be mined.
NHS For all my grumbling we get access to free feeds, medicines, physio, respite, emergency and routine medical care 24 hours a day. There are few countries in the world where that can be said.
Organisation is essential as a simple day trip is now undertaken with the precision of a military operation.
Progressing nicely. P is for..
Poo under your fingernails and snot on your sleeve. Bodily fluids find their home in the most unlikely places, as total dependence continues despite my son growing with age.
Questions, questions, questions rattle around my head unanswered, occasionally come out of my mouth and frequently demand my attention.
Recognition is part of the deal. Like a local D’ list celebrity I am known in our neighbourhood as the one with the bright orange wheelchair and severely disabled son.
Sensory play, switching and splints replace the X-Box, chatting to friends and Nike trainers.
There’s only a few left. T is for..
Therapy For my son it comes in the form of physio, occupational, speech or music. Therapy for me looks more like an afternoon nap, reading a book or counselling.
Uncertain and unknown future.
Valium changed my life. It helped prevent my son’s fits, relaxes his muscles and provides daily pain relief. Thankfully I’ve never been tempted to raid the medicine cupboard.
Weeping is commonplace with tears of exhaustion, heartache and the joys of parenting a disabled child.
X-rays are at least an annual affair, predominantly hip and back with the occasional chest thrown in for good measure.
You just don’t get it. I can describe it, explain it and try to paint a picture but unless you’ve walked this path and stepped in these shoes you just can’t possibly understand. And that is absolutely fine because before I began parenting a disabled child, neither did I.
Zeal for today, for the vulnerable, the weak and for families like mine.
This isn’t what I dreamed or expected for my life but parenting a disabled child certainly keeps me entertained and very busy. Let me know some of your A-Z’s…