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Life Isn't Always Fair

Life Isn't Always Fair

Have you ever felt like Nobi, the mouse in The Lion King that Scar is holding up about to eat. "Life's not fair, is it? You see, I shall never be King. And you shall never see the light of another day."

Recently we’ve had a tough time. My Dad got rushed into hospital following a nasty fall. My wife and disabled son contracted COVID, the oven broke, and the car battery died!! This all happened while trying to juggle a hectic work and home schedule. The worst possible timing.

However, like Nobi the mouse, we have lived to see the light of another day. The sun is shining even through the challenges. My wife and son are much better, Dad is stable, and the oven and car battery are both sorted. What about you? Do you have stories of a time when it was all a bit overwhelming? When you silently, or audibly shouted, "It's not fair!" But survived to tell the tale and fight another day?

Well, I asked a few folks for their stories. And among those there are some that have seen the light at the end of the darkness, while in others, the light has not arrived, yet! Maybe you will see a little of yourself and your family in one of these stories. Or maybe you will be encouraged that it’s not just you that has days like this. We are not alone; we journey through the valleys and the mountaintops together.

You're not the only one

“Last week of the summer holidays, having survived the whole of the summer, I decided to take both of my kids out for the day. A nine-year-old wheelchair user and a one-year-old. I packed all the bags, tubes, medical kit. Hoisted ‘E’ into his chair and ready to load into the car. Went to put the one-year-old in the car. No car seat. It was in my hubby's car at work. Cue mummy crying because she needed to get out of the house. We did successfully get out the next day!” Naomi

“Some days just are hard. One that sticks in my mind is arriving home with my son as a baby to find my attic toilet pipe had burst. Water was running through the entire house minus one room! Trying to juggle a starving baby; phone every plumber I could and work out where my insurance details were. I wouldn't have managed at all that day if my friend hadn't come to the rescue. She sat with the kids while I got the water stopped and insurance people out etc. But we deal with whatever is thrown at us. And in the end the insurance paid for all new carpets and painting all the walls so it could have been worse. Just had to live in the front room for a couple of months.” Jade

One thing after another..

“One day I took my disabled dad and three-year-old son out for lunch. The car park was on a slope. For some reason my dad thought I was holding the wheelchair when in fact I was searching for my keys. He took off the wheelchair brake and went hurtling down the hill. By some miracle he didn’t hit anything and came to a stop towards the bottom after scraping along the wall of the car park. Luckily, he wasn’t hurt, just a little shaken.

After lunch I took my dad home and collected my six-year-old for a routine immunology appointment at the hospital. Taking both of my children with additional needs is like herding cats. Neither of them has a sense of direction or danger and they constantly distract each other. After the appointment, we had to go to another department for a blood test. My three-year-old had a screaming meltdown because he didn’t want to leave the toys he was playing with. It was more than a tantrum; this was a full-on purple-faced screaming fit and it took me and two nurses to calm him down. In the end, the nurses showed him their ‘magic drawer’ of toys and allowed him to choose one to take home.

When we arrived home, my six-year-old was a mixture of totally hyper and absolutely exhausted as he processed his hospital experience. This manifested itself in him pushing, rolling on and shouting at his brother and I. As he was flinging himself around, he tripped and tumbled head-first down a flight of stairs in the garden. Thankfully he was fine apart from a collection of cuts and bruises.

Sometimes you get to the end of a bad day and think: “At least everyone’s still alive, well done me.” On this day I had to add “Well yes…. just!”” Lizzie

Take a deep breathe

Wow! So many amazing stories. Such a mixture of heartbreak and hope, pain and perseverance, struggle, and security. What seems to be a common theme of these stories is faith. Faith in ourselves; faith in other people that we can trust and who just “get it.

So, next time you are having one of ‘those days’, remember that you are not the only one. You do not travel alone through this life, there are plenty of us that are having one of ‘those days’ too and we are here for you.

With thanks to everyone who contributed.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Mark Arnold

Meet Our Blogger

Mark heads up Urban Saints pioneering additional needs ministry programme and is co-founder of the ‘Additional Needs Alliance’, a learning and support community. He is a ‘Churches for All’ partner, a member of both the ‘Council for Disabled Children’ and the ‘Living Fully Network’, and serves on the executive for ‘Children Matter!’ Most importantly, he is dad to James, a 17-year-old Autistic boy with Learning Difficulties and Epilepsy.

View Mark’s Profile

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