What I love about being the parent of a child with Special Needs

Before you read this post I should warn you that sometimes I can be a little bit sarcastic.

What do I love about being the parent of a child with special needs?

I love my kids.

Yeah -that’s right! I love all three of the little buggers – even the ‘normal’ one who doesn’t bring me loads of sympathy, a get-out-of-jail-free card, or shed-loads of benefits. She is great at dealing with her siblings though, so she does have her uses.

I love being a parent.

I had problems having kids, so any kind of kid is better than none at all! And parenting is SO much easier when you don’t have to worry about dressing the little sods in the latest Instagram-ready outfits, or buying them the latest must-have toys, or fighting to get them into the best school; when you don’t have to spend your evenings running them to Scouts, Brownies, football, dance classes, judo,etc; and when you don’t have to worry about SATs or GCSEs, or university.

We ‘special needs’ parents don’t know we’re born, right?

I love that I don’t have to discipline my kids or teach them manners.

OK, let’s stop right there. I did warn you that I can be sarcastic.

Right now, I’m being very snarky indeed. I shouldn’t have to explain what I love about parenting a child with ‘special needs’.

I wouldn’t have to explain it to another ‘special needs’ parent.

They would understand: not only the kind of things that I might love about parenting a child with a disability or additional needs, but they would understand that there ARE many things to love about this kind of parenting.

Most of the rest of the world doesn’t understand this: they have so many misconceptions and myths clamped firmly in their jaws, like badly-trained bulldogs that won’t let go of a thing until they’re prised off with a stick.

There’s the eye-rolling mummy in the supermarket who thinks our children behave in unexpected ways because we don’t bother to parent them; the bitter keyboard warrior bashing out the assertion that our children are just a meal-ticket, that you only have to take your child to the doctor and ask for a diagnosis of ADHD and you immediately get four times the amount of state benefits that anyone else gets; and the blinkered old fart who says that he once met one mother who said she didn’t love her disabled child and wished she’d never had him, and therefore this is undoubtedly true of all others.

These are the people who need an explanation, whether they want one or not. And these are the people who make me feel the most sarcastic.

But, instead, here is my polite and honest answer to the question ‘What do you love about being the parent of a child with special needs?’, which will, of course, immediately be discounted by anyone who really needs to hear it:

I love my kids: All three of them, equally.

I love them because they are mine, and I love them for exactly who they are.

It has been, and still is, fascinating watching their personalities, interests, and aptitudes developing, watching them become ‘their own people’.

I love that I can see different shades of both myself and their dad in each of them.

I love seeing them achieve – it doesn’t matter what the achievement is, so long it represents progress or a personal best, all are equally a cause for celebration.

To be honest, I just love to see them try, because having the confidence to try things is the most important first step, a thing I myself have so often lacked. I love to see them go out into the world and enjoy life in spite of the challenges they face.

I love that, perhaps because we have faced more challenges, we are a very close family unit.

I love being a parent: I suffered recurrent miscarriages before finally becoming a mum, so to me, parenthood feels like a privilege rather than an automatic right.

The love a child brings into the world with them is the most marvellous gift ever, and the feeling of holding my children in my arms, warm and moving and vibrating with life, is something I will be in awe of for the rest of my life.

I will never get over my delight in them. I take immense pride in trying to be exactly the parent each of them needs, and they’ve each needed something slightly different.

I love reading stories at night, picnics, trips to the zoo, the seaside, and the cinema, family holidays, meals round the table, going to the pantomime, the excitement and togetherness of Christmas.

My parenting life is not different to ‘typical’ family life, it just has some extras, and the full-on parenting demands that come with young children will go on for a while longer than usual.

If I haven’t been able to have a career because of my children’s needs, then that’s not a tragedy, and it’s certainly not a ‘waste of my education’.

I can’t think of a better use for my energy and creativity than finding ways to help my own children thrive in a world that makes life far more difficult for them than it needs to be.

NICU Awareness Month 2019- Recognising PTSD and Trauma

There is not enough support for families who have been through a birth trauma.

September marks the beginning of NICU awareness month. I like to joke that for many families like ours, everyday is NICU awareness month.

You leave NICU, but it truly never leaves you.

I realise this isn’t the sunniest of topics to discuss, however I feel that by opening a dialogue about how things affect us… we pave the way to a future of understanding and maybe even recovery.

There isn’t a day that passes where I don’t think about those days. There isn’t even a trigger, it literally consumes my every thought some days. I view it now through a blurry memory.

We had endured such trauma when Amy was born that I know I never truly took in what had happened. I still struggle now thinking about how back then I didn’t fully appreciate the enormity of the situation.

For those not familiar with our story – Amy was full term, went into shock when I was in labour. Was born via emergency c-section with no heart beat.

She was resuscitated, and ventilated and sent for cooling therapy. She sustained a severe brain injury which 5 years on manifests itself as GMFCS 5 dyskinetic/athetoid cerebral palsy. She spent almost 6 weeks in hospital between NICU and the neo natal ward in 2014.

For me, I think I will always grieve what the NICU journey took from me.

We didn’t get to hold her for days.. and when I did I was terrified I’d break her or pull out a probe/tube. I didn’t get to breast feed her. When I returned to my room I walked past mums who had their babies by their side in a little cot. The anguish is real.

I am not sure what sort of support is needed for families, I just know that I felt hopeless.

Like I was floating around lost in space, terrified and confused.

Equally I feel that the dads are so often overlooked too.

There were times where no one would tell Phil whether or not Amy and I were even alive. He had been bundled into a room on his own left to deal with the situation. I can’t even imagine how he must have felt.

A few days ago I was in the garage digging out the halloween stuff. I know I know, summer has barely finished.

But I do love Halloween and I knew Amy would be excited for the annual appearance of Mr Pumpkin (he sings the monster mash and spins round, she loves it. My dad bought it for her.)

As I rooted through the boxes I happened up on one named “Amy’s baby stuff.” I don’t know what compelled me, but I ignored the comically named “this is Halloween” box in favour of revisiting some painful yet also happy memories.

After an initially freak out about the spider webs I was now covered in, I poured out the contents of the box. I let out a small gasp of wonder at these almost forgotten artefacts. It has only been 5 years but children acquire so much stuff you sometimes forget what they used to have.

There it all was. Each item a memory. I picked up every item and gave each thing a few seconds thought.

The jumpers knitted by a friend and ex colleague. The babygrows Grandma June got us for NICU when we realised we had no clothes with us. The gorgeous dress she wore for a family christening that was sent from our friends in America.

The little shoes Phil bought before she was born… how we laughed at the cuteness of them. The many… MANY rock n’ roll/punk themed vests. I could go on, but I won’t. I was aghast at the tininess of the clothes. Was she ever really that small?!

It was then that I stumbled up on a smaller box. I remember being given it on the neonatal ward when Amy was to be discharged after 6 weeks.

In my confusion, at the time I couldn’t understand why on earth I would want to return home with probes, a cpap hat, hospital bands and a blood stained cloth. Why would I want these symbols of the trauma we had endured?

Was this a sick joke? I treasure this box now and feel silly to have ever thought badly of it.

Sometimes at night as I try to close my eyes and sleep, I remember the exact sound of the beeping. I didn’t know what any of the beeping meant, I had no idea.

If people rushed over then it was bad. If they didn’t I panicked that they hadn’t heard it and that she was going to die.

I remember the nights in my bed in hospital staring at the wall. Staring at the dandelion stickers and wondering was there someone on the other side of that wall also staring, also wondering why this had all happened to them.

Phil and I were visited everyday by my parents and his mum. We would sometimes all cry together and discuss how the day had been.

Or we would become somehow delirious in our fatigued traumatised states and all end up laughing hard. We would finish laughing, let out a sigh, and sometimes weep quietly. It was bizarre.

We experienced the full spectrum of human emotions on a daily basis.

We would high five, celebrate, have a group hug at the news our child’s bladder worked. We would slump down to the ground crying when we are told she had started breathing for herself a bit but then stopped again and was needing intervention.

Every bit of information I was given didn’t sink in. “She’s having an MRI today”. I didn’t even know what that meant. I just knew it was good she was stable enough to leave the room.

I just put all of my trust into these incredibly skilled doctors and nurses. They knew what they were doing. I wondered how it felt to be them, to see all of these poorly babies fighting to live.

Their parents and other relatives distraught. Most of us probably never even knew what NICU was.

How did the medical team cope under such stress? Did they block it out and become numb? Or did they get invested and take the weight of the emotions home with them? I am sure they get regular input from psychologists or counsellors, but even so, I am truly in awe of the people working in this field, and more grateful than they could ever know.

I’d love to hear the stories of others that have been in the NICU, and also how that journey has changed you, and if you sought help with the grief/PTSD.

What is normal?

I had a conversation recently with a fellow Mom of a special needs child that really hit home. The conversation revolved around how our perceptions of what is “normal” have changed so drastically since having our kids.

It made me realize more than ever that “normal” is a relative term, and each person; each family has its own version of what is normal and what is not.

The fact is that every family has their challenges; some are just more obvious than others.

I came up with a list of things that we consider to be our version of normal. I’m sure you all have a list similar to this one. These things may be considered unusual, but they have become a way of life for us.

You mean it’s not “normal “:

To have toys lined up on the windowsill, TV stand, and floor. All the time.

For your garage to look like the medical version of the TV show “Hoarders.”

To think that 4 straight hours of sleep is refreshing

That our car looks like we packed for a vacation just to run a few errands

For your living room to resemble a mini-hospital

To be woken up by beeps from a pulse ox machine rather than an alarm clock

To forget what “spontaneous” looks like.

To have to drive more than two hours for doctors’ appointments because your child’s specialists are all out of the area.

To feel like it’s Christmas when you get approved for a new piece of adaptive equipment.

To have a hospital-ready bag packed at all times.

To have to constantly educate people about your child and their condition.

To have massive anxiety when cold and flu season rolls around.

To have to scout out unfamiliar places before attempting an outing to check for possible triggers that might cause a major meltdown.

To have a file drawer dedicated solely to your child’s medical records, IEPs, and other diagnosis-related paperwork.

I know that sometimes it’s hard to see other people’s “normal” and even sometimes be envious. One of my favorite quotes is from former US President Theodore Roosevelt; he said: “comparison is the thief of joy.”

I know that for many of us, our version of normal may not be what we planned for our lives or our kid’s lives, but I also think it’s one that we should embrace as best we can.


What my disabled son has taught me

Throughout my life, I feel like I never had a purpose. I got by day by day not really knowing what my life would come to, working a miserable job, just getting by not knowing what I would make of myself.

That all changed the day I became a special needs mum.

I genuinely believe the saying that these amazing children are born into the lives of special people.

People who have been put on this earth to protect and care them. I never knew how much I wanted Ryan until he was brought into my life and from there on together we have started an incredible unexplainable journey.

How can one little boy teach you so much?

I could write an endless list of things that Ryan has taught me throughout his short 4 years on this earth but considering my blog post would be never-ending if I did that I thought I would list a short few.

Our children are superheroes.

My son goes through so much on a daily basis and wakes up every morning with a smile on his little face.

He can make his needs known without even having to say a word. He has to endure hours of hard therapy. He might get upset but we as parents know it’s for his own good.

Ryan can make even the darkest day seem brighter with this sheer excitement over the simplest things.

He is grateful for somebody to just acknowledge him.

Some days it’s good to cry.

Parenting a child who has so many complex needs is an emotional rollercoaster.

Some days I blame myself, some days I blame others. I question why and what-ifs.

I can feel alone. I compare my child to others. I fear for the future.

I have found through my years of experience that sometimes, on the worst days or even the best days its okay to sit in a dark room on my own and cry and when I’m done pick myself back up again wipe away my tears and get on with our day.

Be grateful for your own health.

It’s not until you watch somebody else struggling to do something we find on a daily basis so simple that I realise the impact it can have on a person who isn’t so lucky to be blessed with good health. It’s not until you become responsible every day for somebody else, to do the things for that person that’s they cannot do for themselves.

From moving them physically around to changing and getting them dressed. Even down to helping them playing with a toy.

That makes me realise just how grateful I am for my own health.

We don’t take things for granted.

I am proud of my child, we celebrate the little things, the things most parents would not think twice about.

That picture Ryan drew at nursery means so much more to me than any other parent could ever imagine.

The 5-minute chat after we pick Ryan up about how his day was and what he did today at nursery makes me feel content.

The interaction with other children towards him makes me grateful he is accepted.

Every birthday is an achievement we celebrate another precious year of just having him here.

We are not ashamed of him, we don’t want sympathy we just want support and to spread awareness.

Parenting my son with special needs is the most rewarding thing I have ever got the pleasure of experiencing.

The things I have learned and the struggles along the way is something that could never be taught unless you sent a day walking in our shoes.

It’s a love on a different level that I never knew we humanly possible it’s a life lesson that will be cherished forever.

What Terminal means to me

As a foster and adoptive mom to precious little people who have medical needs, I never know what the story will be when I answer a phone call from a social worker.

Our team knows that not much can shock or scare me away. And yet, the hesitance in the voice on the other side of the phone is always deafening before I hear these words: “…But there is something you need to know: The child is terminal.”


The very word used to twist my stomach to a nauseating churn and my cast my mind into a worried net of tangled fears and crushing what ifs.


Terminal means loss and heartache and fear.

Terminal means life is hard and quite unfair.

Terminal means pain is real and love can’t heal all.

Terminal means limited days.

Terminal means death.

The word still makes my heart skip a beat. The label sometimes accompanies a horrific and dark reality. And yet, I am learning that the word terminal is often times simply that: A word.

Doctors know so much. But they don’t know everything.

Medical diagnoses can be very accurate. They also can be completely wrong.

A body can fail very quickly. Or it can fail very slowly over many years.

Terminal wants me to spend my days afraid.

Terminal wants me to feel time slip through my fingers.

Terminal wants to tuck sickening thoughts of death into every corner of my mind.

Terminal wants to turn the sweetest days tart with the bitterness of looming loss.

Terminal changes everything.

But terminal also changes absolutely nothing at all

The gut-wrenching label makes no difference in the way I live life alongside and love my children—all of them.

When I hold these precious bodies close to my own, it is rare than I think of death.

When I child arrives at my home labeled terminally ill, the first thing I do is hold that little one close and peel that label off—every last sliver of it.

I look into precious eyes and I speak the truth of life over a soul more precious than I can comprehend: “Look at you! You are so beautiful and full of life! God is working such amazing wonders in and through you. Your life is so meaningful and so abundant. I am so thankful to have you in our home living life with us.”


Days are limited for all us. Life is laced with unknowns.

My children who are well are held just as preciously as my children who I am told have numbered days. The reality is that we are all terminal.

None of us know the number of our days or when tragedy will come knocking. But each and every day, we have the choice to choose life and life abundant.

We can decide to lay aside fear and double-fist the very moments that make life what it is both in beauty and heartache. It

is up to us to treasure the souls around us and spend every minute messily navigating the days that are gifted to us, no matter the number. It shouldn’t take a label of impending death to make us choose to live.

Some days, I can barely cope with the harshest of realities I know families face. Thoughts of children with small numbers of days and parents with empty arms leave me overwhelmed with grief and anger.

Terminal is a powerful and influential reality.

Terminal is one of life’s greatest teachers.

Terminal tells me its ok to sit in the hurt and choose not to be brave some days.

Terminal reminds me to not go to bed angry.

Terminal beckons me to laugh at mishaps and dance in the rain.

Terminal whispers reminders of the shortness of life and preciousness of each hour.

Terminal tells me to lay bitterness aside and choose kindness over comfort.

Terminal, though rooted in expectation of death, highlights the beauty and preciousness of life.

The missing puzzle piece

It’s 8am. We’re getting ready for school or we’re supposed to be anyway but there’s been a catastrophe.

I go up to my sons bedroom after hearing him call for help and I see him standing with a jigsaw in his hand.

It’s his favourite jigsaw – the countries of Europe with the capital cities under every piece. He does this puzzle several times a day, he loves to quiz us on the cities and he sings along facts that he’s learned about each country as he goes.

It’s became a huge part of his routine over the last few months. When I get to his room and see him with the jigsaw I can feel the stress levels rising – in my mind I’m thinking “please don’t tell me the temperatures of these countries again. We’re trying to get ready for school”.

But then I see his lip wobbling, his fists are clenched and he’s holding back the tears. Portugal is missing!!

I can feel the meltdown coming; I try to reason with him before the hurricane can take full force.

We try some techniques to bring calm, we talk about how the missing piece must be somewhere in his room.

I tell him we’ll conduct a search for Portugal. I ask him where he last saw the Portugal piece, “well in the puzzle obviously because how can I see it when it’s lost and if I knew where it was now it wouldn’t be lost”.

The torch comes out – it’s a full blown search party.

I could’ve continued getting ready for school, told him it was just a puzzle piece that we would find later but to him it wasn’t just a missing puzzle piece – it was a piece of his world that had went missing.

Without this piece in place his whole day would be wrong, he would worry about it all day and there would be chaos because all that mattered to him in that moment was that Portugal be returned to its correct place.

I pulled out drawers, I hunted through boxes and finally I found Portugal had fallen down the back of another game.

There was no elaborate celebration, no big hug, and no expression of thanks.

He simply put Portugal back on the puzzle board and continued with the school routine. It got me thinking though, so often we make light of others puzzle pieces, we see them as unimportant, irrational and we see them as petty.

But if someone needs all their puzzle pieces in order before they can get on with a successful day wouldn’t it be nice if we were more understanding and took a few minutes to help them find them all?

I would’ve searched all day for my sons missing puzzle piece, not just to stop a meltdown but so that my son could see that I understood the importance of Portugal.

It wasn’t just a missing puzzle piece; it was a piece of his world.

Five – and – a – half things my children with Special Needs have taught me

Here are five and a half things that my children with special needs have taught me:

That this moment is all we have, make the most of it: For me, getting washed and dressed in the morning is a chore to be got through as quickly as possible so I can move on to doing all the important things I have to do today. But Freddie makes the most of it as an opportunity for pleasure and fun.

He likes to have a freshen up in the bidet just for the pleasure of sitting in the warm water. Unconcerned about the need to be at school for nine o’clock he allows himself to be totally absorbed in the moment, savouring the sensation.

As I fill the basin so he can wash his face, he seizes the chance to play a game – aiming his flannel at the water from the other side of the room to see if he can get it in first go.

The walk to school is an event in itself: there are puddles to splash in, walls to balance on, dogs to stroke, their owners quizzed about the dog’s name, breed and age.

That true love is not expressed in words or gifts: The love between my children and me isn’t blurted out at the end of a hurried phone call, it doesn’t come wrapped in extravagant paper and bows.

It’s in the middle-of-the-night call at a moment of crisis, when there’s nothing practical you can do to help at that minute, but they just want to hear your voice, hear you reassure them everything’s going to be okay because together you’ll work something out.

It’s even in the bite they give you at a moment of utter frustration that they can’t express, because they feel safe with you, they know you won’t retaliate, they know you’ll forgive them, comfort them, help them calm down.

That I am more resilient and resourceful than I ever guessed: Unlike ‘typically-developing’ children who do come with a manual of sorts – in the form of the advice that can be given by family and friends who were parents before you – a child with additional needs comes with no such guide.

And when no one in my family had any experience of parenting a child like mine, and when support from professionals was thin on the ground or non-existent, I have so often had to make it up as I go along, and work out for myself how to help and support my children.

And I’ve done it – usually from a somewhat bewildered standing start. I think I deserve a sticker — is there a sticker for this?

That the phrase ‘to die for’ is utterly ridiculous and annoying: I know it’s just hyperbole and not meant to be taken seriously, but just how ludicrous is it to suggest that any chocolate based dessert, pair of shoes or new handbag, any material thing on this earth, in fact, is ‘to die for’.

Your children, on the other hand, now there’s something worth dying for, and, if you’re the parent of a disabled child, the fight to secure their rights and their future is likely to be one hill that you’re more than prepared to die on.

That perfection is a subjective concept. You might look at my life and think; ‘No way, I don’t want a kid like that – if I get pregnant, I’ll have every test going; hell, they should invent more tests!’ Let me tell you, anyone who confines themselves only to accepting people who are ‘normal’ into their life risks missing out on an awful lot.

In my eyes my children are perfect, just as they are. And they are the perfect children for me.

No — actually, perfection is not a subjective concept, it’s a myth.

Nothing is  perfect — no person, no object, no situation.

So, if it’s the perfect life you’re chasing then you’re going to be disappointed. It doesn’t exist.

Once you’ve realised this, though, a good life — a happy and contented life — is much more easily achievable. That said, my children will always be perfect in my eyes simply because they are exactly who they were meant to be, and they have brought so many joyous and unexpected things into my life, which I could never have imagined before they came along.

Which brings us back to the first point – making the most of what’s right in front of you.

So, to sum it all up in a nutshell, I think that the most important thing that being the parent of children with special needs has taught me is what my priorities are.

They’ve taught me lots more besides, but this is a blog post, not a novel, and I’m sure your coffee break is nearly over, so we’ll leave the rest for another day, another post: or perhaps a whole series of them, because learning is a lifelong process for all of us.


Lifelong friends

Being my friend is hard. I’m often late, I often have to reschedule or when I do turn up I’m tired and lacking enthusiasm.

Being a mum is a tough job. Being a special needs mum is even harder.

I can completely confirm this as I have both children with special needs and children without special needs.

Life with a child with special needs is full on and requires ALL my attention. It also costs us a lot.

Having had to give up my job and career to care for Ethan, means we are on one wage. We know we are very fortunate to be able to manage on one wage with no extra help, but the costs of living for Ethan is not covered by the money he receives from the government or what we can earn.

His needs are far greater than this.

This doesn’t leave me with an awful lot left over to enjoy time with my family let alone with others. It takes its toll when people are out living their lives and want you to join in but you can’t.

My family will always come first and spending my time with them is my main priority.

Having friends that understand this is so totally important. I ask a lot of the people around me, in terms of understanding.

I don’t ask a lot in time as I’m not one to ask for help so conquer this world as our unit mostly. Understanding that although this life chose us, that we wouldn’t have it any other way and it’s not upsetting or a bad life.

Life is full on and overwhelming and although I want to join in with “normal” conversations, sometimes this is incredibly hard for me to be a part of.

I love hearing about your children but it can also may me draw back as I don’t have the same lives others do with their children.

So know that if I’m not my old self all the time, I’m OK I just need time to process everything.

Being my friend means adapting around me. Being aware that we can’t always visit your house due to access or that my child needs their own surroundings.

It’s not that we don’t want to come, it’s because we don’t often have the energy to be able to conquer the world outside our safe space.

I can often read messages quickly and not be able to reply straight away.

This is because I am usually in the middle of sticking to a routine or performing a medical procedure. It doesn’t mean I’m ignoring you or that I don’t value your friendship. It’s hard to keep on top of my own social life when my carer life is 24/7.

I have always been a socialable person and this won’t change. I just have to limit my time now so as to not burn myself out.

You see I’m a very important part of this special needs journey. I am the one that facilitates everything.

Without me Ethans world would be sad and lonely. This is not me being big headed, not at all. Its me being a special needs mum that knows I have to have things together to allow my son to access a life he deserves.

Being my friend is an incredibly hard job. Some will find it easier than others and that’s ok. Know that I value your friendship and if you get contact from me, even in small bits then know you’re very special to me.

I’m sorry I can’t chase our friendship anymore and I know that makes it harder for you, but know that I appreciate every ounce of effort that you have put into keeping our friendship going.

To those that have stuck by me after 9 years of parenting and special needs parenting, thank you.

To those who I have met along the way, a huge thank you for walking in and knowing what I’ve needed.

For those who are there to listen when I need it. For those who help in ways you don’t even know you’re helping. For all your understanding and for most of all for all your friendship.

Please don’t give up on me. I’m not asking for any of our friendships to change.

I love everything the way it is. Just know that I value you all in different ways. I will need different friendships though different parts of my life. So if I don’t include you in all of it, I’m sorry.

It’s sometimes easier to not have to explain everything to everyone all the time. Because time is so short and important over here.

So finally. A massive thank you to each and every friend past and present I’m very lucky to have you.


Savour the best moments

Let’s face it. My child is never too far away from the need for a full outfit change, or a big crying meltdown that I am at a loss as to how to fix things.

I spend a lot of time feeling a bit defeated and like I’m not doing enough.

So when you get one of those positive moments you need to cling onto them and shout them from the rooftops. What was your latest proud or happy moment as a family?

You could have 100 positive experiences and one bad one in the day.

I know which of those experiences I will be dwelling on when I get into bed at night.

I am making a conscious effort to collect these little moments in my mind to remind myself that actually things are better than I sometimes might portray in person or on social media.

In our situation it is easy to let the bad times bring you down. We live a life of great unpredictability.

There are no guarantees, we never know what is round the corner, no matter how hard we plan… that can all be undermined in the blink of an eye.

So this summer we went on a UK holiday. We are from up north, and we ventured down south.

I was bursting with apprehension. We hadn’t travelled this far with Amy before. She has been known to shriek inconsolably for a small supermarket run so we had no idea how she was going to take this.

The packing was an arduous affair. So much equipment and essential items.

I think I checked her meds about 10 times before promising myself not to check again for fear of a nervous breakdown.

Would it be accessible? Are we close to a hospital? What if we did forget something?

It was accessible. But there are two main stories to come out of this holiday.

Story #1: This is the story I am trying to not let define the holiday.

Amy actually did not cry at all except for this one occasion whereby she needed her nappy changing. It was fully understandable.

She was very sore and uncomfortable and we needed to get her changed asap. I consulted my handy “changing places” app on my phone and saw that the nearest one was conveniently 0.8 miles away.

Brilliant I thought. She will be smiling again and enjoying the seaside again in no time.

WRONG. So the map wasn’t entirely clear on the exact location of the facilities.

We traipsed up and down looking at every building trying to discern if it secretly had the changing places within.

A kind lady came to our aid and asked if she could help. We probably looked more like tourists than ever.

She had never heard of these facilities in spite of living at the beach front for over 30 years. She directed us over the road to a lift and said that perhaps it was on the lower ground by the beach.

We went in the lift and found some disabled toilets. Alarmingly, the door wasn’t locked properly and we opened it to some poor soul who was sat on the toilet!

We thrust the door shut as quickly as we could, simultaneously gasping and apologising.

Where on earth were they? By this point Amy was quite literally foaming with rage. I mirrored her frustration and began to feel truly anxious.

My cheeks were getting hot, I felt like I was going to cry.

Why does it have to be like this? We decided to walk further down and give the search one last try before settling for changing her in our van (which would have taken a long time as we had walked so far from it at this point).

Then, as if by magic. There it was.

Behold. A sign on the door. What did it say? “OUT. OF. ORDER.”

I could have screamed. Perhaps I did. I was so blinded by frustration and anger that actually I’m not sure what my reaction was at this point.

So instead I balanced her precariously on a BABY changing table. Not suitable for her weight. Not suitable space for wheelchair/medical equipment etc.

They were in the ladies toilets too which meant help couldn’t come in and help. She screamed in agony as I tried to clean her. Knocking things onto the floor, kicking me in the face. This would have been much easier with the right facilities.

This was unsafe, undignified, and truly a traumatic experience.

Story #2: Amy’s dad Phil is a thoughtful soul.

Whilst quietly researching fun activities for the holiday he had stumbled up on information about beach wheelchairs. I had seen them on social media a few years ago and have since yearned strongly for Amy to get to go one of these.

We had never been to a beach that could provide one and when he told me this was where it could happen I was absolutely elated.

It was a new experience just for Amy. So many things are designed with able bodied people in mind.

We are always trying to cultivate new ways to include Amy in all activities… but here was an activity that made her the central focus. I was thrilled for her.

The lifeguard office people were SO helpful. The entire experience was so positive. The day before we visited to make enquiries.

They even took us to look at the chairs and took time to explain things to us. We returned the next day with our Firefly Goto seat in tow ready to go.

It. was. incredible.

She sat so comfortably and securely. She got to go to the sea. We didn’t go into the sea as 1) it was super cold and 2) the red danger flags were up.. so probably not advisable!

She didn’t squeal with joy or giggle, but she did take it all in. I can’t ask for more than that. She felt the sea air on her face. She could hear the powerful surging of the sea against the shore. She could feel the bump of the pebbles beneath her. She could hear the seagulls terrorising nearby tourists for their doughnuts.

We thought we might feel self conscious walking a long with this chair with comically large wheels. But actually we didn’t.

I felt proud and happy. We were getting to go on the beach with our child – just like everyone else.

Onlookers smiled at us and made comments about what an amazing piece of equipment it was. It seemed at that moment like the world was rooting for all families to have a great time.

So when I look back on the photos of this holiday.. I will remember getting to use her new travel bed and how happy it made her. I will remember how pleased she was that our apartment had a bath (we only have a wet room at home!).

I will remember her delight at the sea life centre when she got to touch a starfish. I will remember her meeting my friends’ daughter and my friend immediately connecting with Amy and understanding her disability.

I remember how Amy belly laughed as her chair bounced as she bumped a long the marina boardwalk (something that in the past would have caused her to cry).

I have taken so much away from the experience. I love looking at the photos of her on the beach that day.

I hope that more places start to get this equipment in and enable more people to enjoy the sea. I get emotional about the beach and the sea.

I just love it. We don’t live too close to the coast so any time we go it feels really special. I sometimes see walkways that have been made on beaches so that wheelchairs can access the sea, I just wish there was more of it.

I will always be grateful to the coast guard crew for helping organise what maybe to them didn’t seem like a big deal, but to me meant everything.

Try not to let those difficult moments change you and wear you down. Unfortunately, life is ultimately going to throw us a lot of those moments, and for each one we endure we become more resilient, and more grateful for the good times.