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.

It hasn’t changed!

Lydia is poorly again, and the hospital hasn’t changed – after our longest healthy and hospital free period with her of 10 months she picked up something that would leave you and I with a cough and a bit of a groggy feeling for a week.

However, the same thing leaves Lydia on life support in PICU (as she is now just over 2 weeks into admission).

It has been a frightening time as we feared the worst, but she has been improving and they’re talking about removing the life support tube today or tomorrow.

We’re here enough now to know pretty much all the nurses and doctors very well, as I said to one of the nurses today that we see them far more often than we see most of our family and friends.

It never gets easier seeing her so poorly but as we’re here so often it gets easier for friends and family to ignore that she’s poorly and just how hard it is to be in this situation.

It makes me think as I see children and their parents who have never been in this place before are surrounded by visitors, it seems many assume that we know what we’re doing now so we’ll be fine.

As a matter of fact, it gets harder doing this as the shock and support dwindles and the loneliness and difficulty of the situation take its toll on you physically and mentally.

One thing that is new, Ronald McDonald house

Its been here for the last 2 – 3 admissions actually but it’s still new and very helpful to have a nice comfortable home away from home, however it brings its own irritations.

It’s a house full of parents of sick children, some people are very friendly, some are “experts” because they’ve been in for the last week and some are just outright odd – they steal people’s food, don’t consider anyone else and are on the brink of an ASBO.

We’ve stayed in these houses in Bristol and Liverpool and they’re all very similar people but it’s a good and very helpful charity.

Although all this is in place we’re reminded of how hard this life can be, seeing your child sick, speaking in medical lingo every waking hour, being torn between home, hospital, school and everywhere else, living with no privacy in a regularly, randomly inspected room and generally not sleeping as you go between concerned and exhausted but still struggle to pass into sleep.

Crippling fear

There was a day or 2 where we didn’t see any improvement, we know what that means as it continues – sitting down for a “chat” in a comfortable room.

Thankfully she started to improve but your mind begins to run away, what if she doesn’t recover? How can I live without her? What can I do about it?

I can barely move or speak as I think of these things, but the hospital naturally brings up these sorts of awful thoughts and feelings as we witness some parents leaving without their precious children.

Oddly returning to the hospital after a long period away seemed harder than being regular visitors – We had gotten used to being normal (and hospital free) somewhat.

So, the news is that it doesn’t get any easier being away and coming back – We’re still trying to figure out, how do we live this hospital life?

It’s just as well that these children and those 10 months are so worth it

Thursday 8th March 2018; life as I knew it had changed forever when those two pink lines appeared on the pregnancy test I was holding.

In those initial moments thoughts flooded my mind. I dreamt of everything this little bean that was growing inside of me would do. I imagined Christmases and birthdays, holidays and happy times.

The excitement and anticipation were overwhelming.

I was almost nine weeks pregnant when I found out. You see, having Polycystic Ovary Syndrome meant that my chances of ever conceiving a child were diminished.

We’d tried years before but without success. In the end, we gave up, believing that it wasn’t meant to be. I had very irregular periods but when Aunt Flo decided to visit, she floored me.

I’d be in agony for days, so I made the decision to go back on the pill. Late in 2016, we agreed that I would come off the pill again, you know, just to see what would happen.

I was 29 years old so time was running out. I lowered my expectations and believed deep down I’d never be a mum.

Then it happened. I got what I’d always wanted; my first positive pregnancy test.

The months passed. We made all the necessary preparations for our impending arrival. I did all of my research on breastfeeding as it was how I was planning to feed my baby.

My due date came and went, I had membrane sweeps that proved fruitless.

I was a week overdue when his movements slowed down to the point I was so concerned that I felt I had no choice but to call my local maternity unit.

They told me to go in. I waited just under an hour to be seen then the CTG machine was placed on my bump.

Nothing but silence.

“I’ll have to get a doctor to scan you,” the midwife said. My heart was racing so fast I expected it to come flying out of my mouth.

The doctor wheeled in the scanner and explained she needed to check the baby. I looked at the screen and there he was.

Still.

He wasn’t moving and panic washed over me. Within minutes, with a sense of urgency, I’ve never experienced before I was rushed to theatre for an emergency caesarean section.

I was still in my clothes as I was put to sleep and when I was brought round again I was informed by the consultant that it had taken 26 minutes to resuscitate my baby boy as he had been born with no heartbeat.

Nothing could’ve prepared me for what was to come.

Jaxon was transferred to another hospital for a procedure called total body cooling which reduces the temperature down to 33.5 degrees, preventing further brain damage.

It’s a relatively new treatment that’s been around for about ten years. I realised how bleak his situation looked when the doctors told us that they may lose him on the way.

Yet he survived.

I had to wait four days to hold him and when I did he was covered in tubes and wires.

He’d been having seizures and his organs were failing. He couldn’t maintain his blood pressure and had numerous blood transfusions.

We had more end-of-life conversations during his first week on Earth than I’d care to think about and doctors didn’t expect him to survive being extubated.

We signed forms to say not to resuscitate him as we didn’t want him to suffer any longer if his little body simply could not sustain life.

We were told that he would likely be no more than a vegetable if he did survive and he would probably never come home.

Jaxon proved everybody wrong though and showed his determination to live every single day.

After 31 days in the NICU, Jaxon did come home. Immediately the terms Hypoxic-Ischemic Encephalopathy and global brain damage became a regular part of my vocabulary and our future as a family suddenly looked very different.

The past five months have been the most difficult of my life. I’ve learned skills I never imagined I would need.

My days consist of appointments, therapy, tube feeds, suctioning, research, as well as all of the regular baby stuff.

But actually, I’m one of the lucky ones because I miss nothing. Jaxon is far from being in any kind of vegetative state. Every single thing he achieves I notice and I celebrate.

This might not be how I imagined life to be and Jaxon might not be the neurotypical baby that I expected he would be when I first saw those two pink lines, he might be delayed and missing milestones but he’s doing things at his own pace and slowly but surely, I’m learning to not only accept that but embrace it.

Jaxon’s future, at this stage, is so uncertain.

What I do know though is that he’s a warrior. He’s so determined. His resilience is admirable.

He’s already doing things doctors told us he never would, he amazes me each and every day and I know that no matter what, my love for him will see us through every single challenge we face in the future.

My child is amazing because she’s simultaneously the most unique person you could ever meet, but also just like other children in so many ways.

I think what people who are not part of the complex needs, special needs, additional needs (whatever your preference of term) world miss is that actually… behind the wheelchair, splints, feeding tubes, dribble bibs (or bandanas as I am trying to call them) whatever else paraphernalia my child may have… she is actually a child.

It saddens me that the first impression people get of her could be “disabled person” or “person with a disability” because actually there is so much more to her than that.

I always say it – she is not her diagnosis. But paradoxically… she sort of also is.

But if you write her off as nonverbal or difficult to interact with then I feel sorry for you. Because she has so much to offer the world, her smile lights up a room, and she can teach you a lot about yourself.

Like all other kids, she has a silly sense of humour, she wants to be involved, she has her own preferences and hobbies.

Like other kids she thrives on social interaction, she loves music, she loves to explore the world.

She may go about things a little differently, and it may not always be obvious how to talk to her if you don’t know her… but TRY.

My child is amazing.

I am guilty of a bit of “woe is me” and everything-is-so-tough-itis.  I complain a lot.

It’s kind of my right as someone in my 30s (hello ibuprofen), someone who is sleep deprived, and someone who has more physical and medical responsibilities than the average person.

However, it is an absolute honor and delight to have Amy. I hate to overlook the fact that actually there are so many positives to my role as a parent.

There are so many things I love about her. She’s my best friend.

I love how she doesn’t care who her audience is – if she’s not happy about something, she is not afraid to let the world know.

I love how she doesn’t discriminate.

She doesn’t spend time looking at someone and immediately noticing what is different about them. She looks at everyone with interest (or sometimes complete dismissal sorry!) and waits eagerly to see what they can bring to her day.

I love how nosey and curious she is. All children are curious. She’s not curious in the sense of “what happens when we die mummy?”, “why do spiders have 8 legs?” etc, but she’s curious to see what’s around every corner.

No one can walk past a room without her sneaky eyes capturing them and wondering who they are and what they are doing. It really makes me laugh.

It also reminds me of that first year when initially we were told she was blind, then we were told severely visually impaired.

She is visually impaired, but not to the extent we first thought, and it makes me proud to see her look at the world around her.

She has this superpower – if someone has a phone in the hand, or there is a screen anywhere in the room… she will see it and she will try and swipe it and interact.

She’s a youtube junkie just like most other children.

It’s very funny in waiting rooms when she sees a TV simply displaying information and she shouts and starts hitting my lap to encourage me to put something better on.

Her laughter is so infectious. Even at 4 am when you really would rather be asleep.

She is the feistiest bossiest person I have ever met in my life. She may not have the words but she knows exactly how to push our buttons and literally kick us into action to work out which of her needs we haven’t met.

She’s very clever. She takes everything in like a knowledge sponge. You can never be complacent or make assumptions with her, she will always surprise you.

I remember a few years ago when I foolishly left a Christmas present in plain sight.

She recognised the brand logo and managed to roll and bounce on her back over to the box and started to whack it to imply “I’ve found it, mummy.. open it and give it to me!”.

She amazes me every day with what she has to put up.

Gastric discomfort, muscle pains, frustration, seizures, constant intervention from professionals, surgeries, procedures, etc. and can still smile and have a love for life.

I adore her bond with people she is close to. It moves me to tears thinking about it.

I didn’t know if she would ever have the cognition to know who we were or who friends and family are. But she absolutely knows.

A person can be severely brain injured and entirely reliant on care from others but still, 100% know how loved they are and in turn show that they love too.

She gets so excited to see everyone in our family (not always, there is still a lot of child-like sass and attitude at times!) and I love her reaction to daddy coming home from work.

They have such a special bond.

I love that she is a thrill seeker. She really craves movement and loves nothing more than being thrown around up and down and all around.

She squeals with hysterical joy when her daddy does physical play with her (and I stand in the background half cringing half amused).

I hope that one-day theme parks and local parks make more accommodations for wheelchair users so that they can be included in the fun.

I love how she isn’t materialistic. So many children ask and ask for things at the shops, and they want to acquire and collect everything, it’s natural.

All she wants is our attention, walks, music and videos. She’s tube fed so food is never an issue, she doesn’t care about collecting things and is happy now with most of the same toys she has had all of her life.

She treasures the things she has and never asks for more.

Don’t get me wrong, she pulls at my purse strings every time we go to the toy shop, but more often than not if we actually buy the toy she won’t play with it at home and seems to just want to demo everything that’s out there!

I could talk all day about how amazing she is. How she has exceeded all expectation, overcome every obstacle thrown her way, smiled in the face of adversity, endured more than anyone else will ever endure in their life and still plod on regardless.

She inspires me to be a better person, to be more emotionally resilient, to be better educated, to be thicker skinned, to be more patient, to be more empathetic.

I am far from perfect, I have many flaws, but almost every positive aspect of my being has been granted to me by her.

I am more tenacious than ever before, I want to advocate, educate and make aware. I want to fundraise, I want to help and meet others.

I want everyone out there to see her importance and to see her through my eyes. I don’t want the world to miss out on a minority selection of our society because they aren’t comfortable or they don’t understand.

She doesn’t want your pity. She doesn’t want to be your inspiration. She’s just like you.

She doesn’t need to change. The world needs to change.

She is amazing, and I hope that everyone else can see that.

I’d love to see words from others on why their child is amazing. It’s important that the world knows that there is so much positivity surrounding our children.