Isn’t it strange what makes us happy? Just a small gesture, a chance encounter with a kind stranger, an unexpected win.
Today, for example, I was at the drive-thru collecting some freebies I had won… I got home and they’d accidentally included mozzarella sticks I didn’t order.
It probably isn’t normal just how elated I was by this but it made me actually smile.
You see, last week was chaos. Every week is chaos, but this week, in particular, was chaos with a cherry on top.
It seemed to be a constant onslaught of misfortune being flung my way. With each problem I batted away, a new one would soon take its place.
The opposite is also true though… it’s strange what can send us over the edge and on a downward spiral. Last week I thought that I was going to have a real emotional breakdown, not just a bit of a wobble but a full-blown “I can’t do this today”.
It’s a long story, but last year in July I unknowingly drove down a bus lane, I only realised my mistake once back onto a normal lane.
I thought no more of it as a fine never arrived. It turns out it went to a house I lived at 2 years ago in spite of my license being up to date.
I’m a bit of a goody two shoes and very law-abiding, so I was mortified to find out that the new occupants of the house had received visits from bailiffs asking my name. I was mortified.
Mortified to the sum of £480 (about $640). Upon hearing this news I cried and cried. I had only been in that area for hospital reasons as well, I wasn’t out partying and living it up.
It all seemed terribly unfair.
Soon after this news, I got a call to say that the end of Amy’s PEG had broken. She recently had surgery for a jejunostomy so currently has two separate stoma sites.
We have always had a button and not a PEG so I was flummoxed. What do I do about this?
It took me (no joke) about 20 phone calls, several exasperated emails, lots of tears, a few helpful nice people, a nasty secretary, and eventually a frantic trip to collect a spare PEG end before the place closed.
I got home with Amy and now had to work out how to attach this PEG end.
It was actually very simple and my friend text guided me on what to do.
But at the time Amy was having one of her meltdowns and was swinging her legs at me trying to kick my face and was not helping at all with the situation. I felt numb. What a day I had had.
A few days later whilst out with family, I could feel myself bordering on a panic attack. Amy’s epilepsy had been unrelenting and she was very distressed.
She wasn’t in need of medical care at this point but was very agitated and upset. My auntie kindly took Amy for a wander so I could eat my breakfast in relative peace.
When she returned I noticed Amy had slid down in her chair and was being strangled by her chest harness.
Her wheelchair was broken. She had become so angry and dystonic she had somehow managed to snap the pommel of her seat and also the footplate.
I was in disbelief. It seemed like everything that could conceivably go wrong, was indeed going wrong.
I glanced over to a mum sat on her own with her two children. She had spent the whole time taking selfies with her children, laughing, and all eating a meal together. Why couldn’t I have that?
Why instead did we have a broken chair, an inconsolable child, and me feeling stomach pains from having to throw down my food so fast.
I felt guilty that I couldn’t improve the situation, and I felt jealous that at this moment life had given us the raw deal. It just wasn’t fair.
I suppressed the tears and focused hard on not letting it beat me.
(As an update we had to go to wheelchair services first thing Monday morning, the chair was in their words “cream crackered” and beyond repair and had to be entirely replaced. Amy found it hilarious.)
So all of that is just a sample of the many things that happened in our week last week. Perhaps you can relate. There’s always enough going on that you don’t need sudden unexpected fines, things breaking, and medical issues appearing.
So the other day Amy came home from school. As they unloaded her from the school bus I could see immediately she was not in a very good mood.
I got her into the house and the shouting began.
I wasn’t about to stay home and deal with two hours of shouting and being mauled.
I loaded Amy into the van and drove to the supermarket. When we got there she had pooled so many secretions in her mouth that I had to suction her outside the store.
I could see people mouths agape staring in unabashed bewilderment as I hoovered out her mouth. “I’m trying to make her comfortable…” I said to them and sighed as I walked into the shop.
Amy had music on behind her head and was managing to stay quite calm. Coming here had been the right decision. I didn’t even need any shopping, I was simply keeping her distracted and passing some time.
I got onto the chilled desserts aisle and was eyeing up the treats when I overheard a man say “Look at that little girl”… I thought to myself “Oh here we go… what now…”
When I realised… that this man, for whatever reason had seen Amy and decided that this was an opportunity to promote inclusion to his neurotypical/able-bodied daughter.
“Are you going to wave hello to that little girl?” he said to his daughter.
Her eyes met mine, then Amy’s, and she rushed and hid behind her dad. “It’s okay, go and wave and say hi, she’s looking at you.”
The girl looked scared. She didn’t look scared in the “that child is different and scary” kind of way, it was more a social anxiety/feeling shy moment I felt.
“It’s okay,” I said, and I leaned down to Amy and said, “Hey Amy look at that nice girl and man there, can you do a nice wave and say hi?”
Amy thought for a second and threw out the grandest wave she could and grinned avidly at the two strangers. They both smiled and laughed and waved back.
I then had to stop the interaction there. Why? Because tears were streaming down my face.
That day I needed a little wave and hello more than Amy did. I needed that little bit of recognition and inclusion.
I don’t know this man’s story, perhaps he knows someone who has cerebral palsy or a disability and recognises the importance of making every child happy.
Or maybe he thought how cute Amy was and wanted her to feel special in that moment.
Maybe he’s just a really good dad who knows that his daughter should be open to talking to people of all backgrounds.
Whatever it was, I’ve thought about it every time I have been to the shops since and I’ve thought about it every time I’ve felt a bit low recently.
We didn’t gain anything materially from the interaction. It didn’t pay for my bus lane fine. It didn’t make the secretary speak to any more humanely. It did nothing to fix the plethora of issues we currently face.
But it validated my daughter and confirmed to both of us that she is important and special.
I don’t know if that man will even remember the encounter, or ever know how important it was to me on that day.
But it really shows that a small gesture or act of kindness is contagious and can turn someone’s bad week around.
I think “Stay at home parents”, or carers can feel especially isolated at times. I sometimes feel I have lost my tether to reality and that our life isn’t relatable to the general public.
I feel that we are either invisible or TOO visible… there’s no in-between. My self-esteem has taken a knock, and sometimes I avoid eye contact and hide away as much as I can.
Other days I crave the interaction, to feel that there is more than just our little bubble.
So to that man in Bredbury Morrisons last week – thank you.
Thanks to you your daughter will hopefully grow up to be someone who appreciates and advocates for people of all backgrounds and sees their validity and importance. Well done.
Wishing you all unexpected breaded cheese, kind men in supermarkets, and wheelchairs with the strength of a thousand men.