Holidays are fab, right?

Time away from the hustle and bustle of everyday life, leaving all your worries at home, heading off to the sunshine to sip cocktails, read books and take a dip in the pool.

Unless you’re a family with additional needs. Holidays can still be fab, but they certainly aren’t always care-free (or carer-free!).

Our first break away with Heidi was when she was just a few months old. We had a caravan and Heidi had a list of medical extras. What was I worried about?

Well, as it turned out, I was worried about pretty much everything!

Bearing in mind it had only been a few weeks earlier that leaving the set-up of the spare bedroom (cot, suction machine, oxygen, nappies etc.) to venture down to the lounge seemed like a big deal, actually preparing to leave the house was huge.

I was like a woman on a mission though – determined to prove a point…of course we can go on holiday, we’re not going to miss out, no biggie blah blah blah!

We did make it away – with my spare chargers, lists of local hospital telephone numbers, more spare chargers, spare feeds, spare clothes, spare nappies, another spare charger – and it felt like we achieved what we set out to, but it was far from relaxing.

For example, we took a bottle of fizz, because it felt like that’s what people do on holiday, but we didn’t dare drink it in case we had to drive home or to hospital.

I was on edge in case the electric hook-up didn’t work and I couldn’t use the sats monitor. I don’t think I slept at all for keeping an eye on Heidi and making sure she didn’t miraculously escape from her Moses basket.

I’ll be honest, I was relieved to get back home.

The next time we went was a little better. I was getting less twitchy about leaving the house and started to feel more organised in terms of what we needed to carry with us.

Somehow, and I’m not sure exactly when, we got to a point where it was enjoyable. It felt “normal” (I don’t like that word, as what is normal really, but hopefully you get what I mean).

Heidi got bigger, and our caravan got cramped.

Plus, we couldn’t tow with our wheelchair adapted car, so we took the plunge and invested in Big Mo the motorhome. It was second hand and we had to have adaptions done, but we knew that without it, our breaks away would be harder to do.

There was a lovely spell where things just worked out.

Our packing routine was down to a T, and Heidi was still an ok size to be lifted easily (she’s non-mobile and non-verbal with a diagnosis of dystonia thrown in for good measure).

But, as is so often the case with little ones, Heidi continued to grow.

Chucking her over my shoulder and climbing up the steps to Big Mo (don’t tell OT!) started to get harder, her wheelchair got bigger, and our baggage started to bulge. 

We realised though that booking a more traditional holiday just isn’t that easy for families like ours.

We need a profiling bed (or at least a bed with secure sides – Heidi may not be able to purposefully move, but she does some amazingly big stretches in her sleep!); we need a hoist; we need a wet room and a changing table; we need space; we need wide doors; we need ramps; we need ground floor accommodation or a lift; we need a break!

There are some brilliant places out there – we recently found a gem not too far away and had a lovely weekend away with friends, but truly accessible places like that seem to be few and far between, or expensive, or booked up months, sometimes years, in advance.

It feels like there was an optimum window with Heidi where she was well enough, and small enough to get away relatively easily.

I am of course super grateful for that.

Holidays are an absolute extra, and lovely if or when they can happen.

I do sometimes think that going forward it will be less stressful (and far cheaper!) to stay at home with Heidi, where everything’s set up and I don’t have to worry.

Maybe we’ll just pretend we’re away, now where’s that cocktail menu…

I’ve no idea how many awareness days there are in the world (I could probably Google it) but there must be loads.

I only have to glance at our emails from my daughters’ school – there’s always one about wear a particular colour for this, or do an event for that (which sends me in to a mild panic as I usually only realise at the last minute!).

All of them very worthwhile, and for great causes.

One is particularly close to our hearts, and that’s the HIE Awareness Day on the 4^th April.

Before we had Heidi, I had never heard of HIE (Hypoxic-Ischaemic Encephalopathy).

I was blissfully unaware that HIE was even a thing. I’d had (thankfully) a very straight forward pregnancy.

I’d reached full term. There was absolutely zero indication that things could, and would, go so badly wrong.

Within a very short space of time, I went from having never heard of HIE, to trying to become an expert, so that I could do the best for Heidi, in whatever way possible.

But how can an awareness day help?

When you’re thrown into the world of HIE, it’s frightening.

You don’t know what’s going on, you don’t know what the future holds (the “wait and see” is one of the hardest things about HIE), and you don’t know where you belong.

Surrounded by precious premature babies in the neonatal unit, I remember feeling completely out of place.

Heidi was a corker at 9lb7oz, she filled the incubator, she looked sturdy and fragile all at the same time.

The leaflets given to us weren’t relevant, the milestone cards not appropriate, and the constant explaining of “H.I…what” exhausting.

So, when we felt able to, we tried to make some changes, and find the good in a difficult situation.

We set up Peeps, the only charity in the UK dedicated to supporting those touched by HIE, and we created the HIE Awareness Day. (That makes it sound like we’re pretty official – behind the scenes, it’s all run from our kitchen table; there’s plenty of planning and a little bit of winging it, but each year it’s getting bigger and bigger, and the support we have had is fantastic). 

The HIE Awareness Day is a way of reaching people, bringing a community together, who may otherwise feel as lost as we did, especially in those early days.

We use #HeardofHIE as so many people haven’t, until it happens to them.

I really do feel that it could, and should, be talked about (very gently and sensitively) in antenatal classes, so that at least it’s a term people have heard, and know that support is there if ever needed.

There’s so much I’d like people to know about HIE.

It affects us all so differently, in different ways and at different times, and there’s no right or wrong way to come to terms with it.

The HIE community is one that no-one would choose to join, but when you find yourself in it, there really is the sense of “finding your tribe”.

There’s an understanding that can’t be explained.

We all “get it” and do our absolute best to lift each other up on the bad days and cheer each other on on the good ones.

For families like ours, HIE is with us every day. Having one day dedicated to it though is an opportunity to shine a spotlight, and reach more people, so that they can say they have #HeardofHIE.

If you’d like to get involved, please head to www.peeps-hie.org

I’m generally a positive person; looking for the good in the world, trying to see the best in people, and dusting myself off to bounce back again when things go pear shaped.

I have an internal dialogue running on a frequent basis, and when things seem to be going in the wrong direction, I’m often found to be giving myself a harsh talking to.

“At least we have a roof over our heads”, “at least we have food on the table”, “at least Heidi is stable”, “at least Heidi is here…”.

A long list of reasons why I shouldn’t grumble.

But in a recent training course (Mental Health First Aider training, highly recommend), I realized that my pep talk wasn’t really helpful.

I also realized that I have also used my “at least…” take on events with other people, to try and find a silver lining, or a glimmer of positivity when things have been tough.

It’s with the best of intentions and I’m sure (I hope!) I’m not alone; we want other people to be ok, we want to show them what they have, all the good stuff even if they aren’t seeing it themselves.

So “at least…” has never been with any malice or meant to be condescending.

What I now know, is that sometimes you just need to acknowledge that things feel rubbish.

Yes, there is “always someone worse off than you” (how many times have you heard that one?), but your feelings (and mine) are valid and need to be recognized.

Telling yourself “at least…” probably only makes us all feel worse.

I know it did with me!

I felt awful for having a whinge about something (and let’s face it, it can be the smallest thing that tips you over the edge) when I knew that other people were having a really challenging time in comparison.

I felt guilty.

But the feelings of guilt didn’t take away my other emotions, so I ended up a big unhappy ball of whinginess and guilt!

My inner voice is now trying to be much more productive, and kinder to myself, and I would encourage you to do the same, if any of this sounds familiar.

Even the most positive of people can have an off day or week, and especially in current Covid circumstances, it’s more than expected.

We all know it’s ok not to be ok, but if that not ok is lasting a little too long or is having a significant impact on your daily being, then please do have a chat to someone.

I genuinely believe that asking for helps is a sign of strength (as you can see from the pic we’re in the Strong Girl’s Club).

And if someone comes to you feeling anxious or low, and your go-to phrase (like me!) would have been “at least…”, why not try “I’m so sorry you feel that way”, “that sounds like it’s really difficult”, or “how can I best help you?”.

I’m sure they’ll be glad to know you care.

I’ve seen a few posts over recent months, referring to people in the pandemic being in the same boat, others saying that we’re in different boats but in the same storm; they both make sense to me.

Even before Covid, and I am guessing like many other families who have a child or children with additional needs, I felt it was my job to keep things together.

Throw in a pandemic, and I felt my role set up a gear – it was job to steady the ship. 

We hit our first storm just after Heidi was born – thrown into troubled waters, that definitely hadn’t been forecast, scrambling to get our life jackets on so that we could keep our heads above water.

We managed, just, to cling on.

We felt like were drowning in the early days, swamped with information, and the odd big wave (in the form of seizures or set-backs) that would come crashing in to us, knocking the wind completely out of our sails, and sending us off course.

We coughed and spluttered, and we held on, tight.

Somehow, the waves calmed.

The view cleared.

We were steadily heading forward, and it started, at times, to feel enjoyable.

We became a cruise liner – slowly moving in the right direction, going at our own pace, and taking in the scenery.

Between us we became the cooks, the cleaners, the entertainment (fun is still really important, despite additional challenges!), the weather forecasters, the deck hands, maintenance, logistics…the list goes on.

We had our little crew around us too – a close knit team, who came on board to help us out, bringing supplies, and guide us to shore.

We also met other travellers who were, thankfully, happy to share their journey and the lessons they had learned along the way.

As the months and years passed, apart from the odd rough patch, our ship continued to sail.

Very much the Captain (well, Steve might have something to say about that I guess!), it became my role to keep things organized.

I often joke about “running a tight ship” but it really is how I try and keep sane.

If things are planned, I know what’s coming up, I feel better.

When bad weather hits (usually in the form of an illness or hospital stay for Heidi, but recently with Covid and shielding), it’s a feeling of having to hunker down, pull together, and know that calmer times will be coming.

It never ceases to amaze me though how in those times of needed (and even when you don’t realise you are getting into troubled waters), how quickly other ships will appear alongside you.

Without hesitation, and without thinking of their own predicament, the army of support is there. 

Other families, other parents who simply “get it”.

They may be on a different boat, they may be experiencing the storm in a different way, but that all becomes irrelevant.

We are in this (whatever “this” may be) together, and we’ll do all we can to get through it.

Here’s hoping that better times are ahead, for all of us.

I joked the other day about being a control freak…or a “control enthusiast” as comedian Sarah Millican affectionately calls it, sounds so much better.

As I thought about it, I felt like maybe it was a trait I should apologize for, or try and address, but I don’t think I want to!

There’s always been a bit of it there, but it’s definitely got stronger since I had Heidi. (Heidi was born in 2015 and experienced a HIE event, a lack of oxygen to the brain, shortly after birth. She has cerebral palsy as a result and lots of extras!).

You see as soon as things took a dramatic turn with Heidi, any control I may have had was taken away from me.

My birth plan (which was pretty relaxed to be fair), went out of the window.

I didn’t get to choose the first blankets she was swaddled in as the room was full of doctors and she was whisked away to intensive care.

I didn’t have the choice whether to breastfeed or not as she was fully tube fed (and still is).

I didn’t choose how we spent our first few weeks as a new family because we were in hospital, with doctors and nurses doing all they could whilst we watched on in shock, before our fight and survival mode kicked in.

The only thing we (Steve my hubby and I) could do was try and claw some of that control back.

I felt a little better by tidying Heidi’s hospital room; a spreadsheet (I know, geeky or what!) gave me security as we tracked Heidi’s feeds and weight gain; a diary helped me to log changes and progress, no matter how small; even ironing muslins made me feel like I was achieving something, when so many other things had been collapsing around me.

And this is how we carried on, for weeks and months, and as Heidi got stronger, so did we.

We established a routine.

We got organized with feeds and meds.

We packed a hospital bag (our “oh sh&t” bag!) in case we needed a short-notice dash to Children’s Unit. We drew up a list. We planned ahead.

We had spare spares (nappies / suction machines / chargers). We did everything we could to make life as easy as possible.

And it made me feel so much better.

Almost 6 years on and we are still pretty much the same, apart from the ironing – that stopped completely at the start of the first lockdown!

I draw up Heidi’s meds for the following 24 hours, I do a weekly medicine check so I can ring the pharmacy and order anything we might need, we still love a bit of an Excel doc….the list (literally!) goes on.

It’s just routine, and I don’t do it in an anxious way, it’s just how I roll.

I realise that control is my comfort.

I like a plan, I like to be prepared (never come to me for anything spontaneous!), but I also recognize that sometimes life doesn’t go to plan.

I work hard on accepting when control isn’t possible, how I have to adapt, or re-focus.

It’s way out of my comfort zone, but sometimes that’s not a bad thing I guess.

…that pregnancies don’t always have the outcome you may have dreamed about.

I don’t mean scare the living daylights out of mums and dads to be, take away the magic of expecting your baby, increase possibly already high anxiety levels, or paint a doom and gloom picture of every possible worst-case scenario.

But a heads-up that sometimes things don’t go to plan would, in my opinion, be helpful.

An awareness, a “oh I’ve heard of that before”, or things to keep an eye on could go some small way in allaying initial fears when your direction of journey rapidly changes.

…that full term babies can be poorly too, and find themselves in neonatal care.

I was incredibly blessed with an uneventful pregnancy, and never for one second did I take this for granted.

I breathed a sigh of relief at my 12 week scan (knowing that some babies, heartbreakingly, don’t make it to that stage), I declined the test for Down’s Syndrome as I knew it wouldn’t change anything for us, and I (naively) didn’t pay much attention on the hospital tour when they showed us the neonatal unit .

I was already 37 weeks pregnant, our baby wasn’t going to be premature, we wouldn’t been needing their services.

How wrong could I have been! (Heidi experienced a HIE event, a lack of oxygent to the brain, just after birth – at 40+11 – and was transferred to NICU to be looked after).

…that breastfeeding might not be an option, no matter how good you know it is for the baby and how much you want to do it.

I had had a pretty relaxed approach in terms of my thoughts on breastfeeding – I wanted to try it but wasn’t putting myself under pressure if it didn’t happen.

Fed is best and all that! 

I sat through the classes with other mums and bumps where we learned the importance of colostrum (liquid gold!), the bonding benefits of enjoying nursing time, the fact that it doesn’t always come easily, and that with the right guidance and perseverance, you’ll get there.

Throw in to the mix though a baby who doesn’t have a safe swallow, hooked up to machines  and being cooled to prevent further injury to their brain, and a mama who is emotional and exhausted –  formula and an NG tube (nasogastric feeding tube) soon become much more important. 

Babies need feeding tubes for lots of different reasons, sometimes it’s a short-term thing, for others, like our daughter, it will be with her for life.

Again, it’s not about causing worry, but having a brief understanding of what they are, before you’re in that situation, may just take away a little worry.

Of course no-one wants their baby to be tube fed, but how amazing that we now have this available to provide essential nutrition and medicine?

That little tube of plastic is literally a life saver.

…that you (very quickly) know what is best for you and your child.

Yes there is lots of great information out there, and some wonderful healthcare professionals, but you are the expert on you, and especially if your child has any additional needs, you will soon become the expert on them.

Mums to-be should be given the confidence to question, the courage to speak up if something doesn’t feel right, and always be involved fully in every decision made regarding them and their little one.

…that you may not feel a whoosh of overwhelming love  of suddenly being a mum (or dad) straight away.

As an avid fan of One Born Every minute, and a reader of many a pregnancy magazine, I was ready and waiting to feel instantly like a mum, to be transformed into a maternal super-machine, from the second Heidi arrived.

It didn’t happen (and 5 years on, I can totally understand why).

I felt numb, then scared, then overwhelmed, then tired, then tired some more, but I didn’t feel “like a mum”.

I got hung up on this for a bit, and remember talking to my own mum about it.

She talked sense – it doesn’t happen like that. It takes time, hormones need to settle down, and when you have a poorly baby, you have so much else going on.

But you are a mum. And chances are you’re a bloomin’ good one.

…that however you’re feeling is ok. Social media has its place, and there can be some real positives from it, but there can sometimes also be an unrealistic portrayal of life.

New mums who ping back in to shape, babies who sleep through the night from day dot, tidy houses and immaculate hair and nails.

People rarely post the bedraggled selfies of when you’ve done your umpteenth nappy change of the night, the snap that shows you haven’t slept or showered in days, or the picture that points out tears of sadness or worry that sometimes catch you off guard.

These feelings are ok. They are “normal”, especially if your baby has been or still is poorly.

How you feel is valid, and isn’t to be compared to anyone else (and if you are one of those immaculate mums and that’s your thing, then of course that’s fine too….I’m just a tad jealous!).

…that you are way stronger than you ever knew you could bem even if you don’t always feel it.

You may have wondered if you were up for motherhood, you may have questioned your parenting credentials, but once you become a special needs parent then this is ramped up to a whole new level.

Can you do it? Are you cut out for all this?

What if your baby would be better with someone else?

Well you can do it, you will do it, and you will find your way.

It’s sometimes a bumpy road, but it also can be a marvellous journey, and leading on to my final point

…you’re not on your own.

The early days of having a baby can be overwhelming, and sometimes lonely.

I hope that everyone knows they aren’t on their own.

There’s lots of support out there, for whatever your circumstances may be, and there is nothing wrong with sometimes shouting out for a bit of a helping hand.

When I was young, which now feels like I’m going back a loooong way, I used to love doing stuff for charity. Whether it was bake sales at Brownies, selling raffle tickets at school, doing midnight wanders with work, or volunteering in my spare time, there was always something to get involved in. I loved it.

The feeling that you had done your bit and made a difference was great. I knew the money raised or time donated went to a good cause, but I didn’t really think too far beyond that.

But then, suddenly, there came a time when we were offered the support of a charity. The tables had turned!

Heidi was a few weeks old. We hadn’t yet got her home from hospital, and one of our consultants offered to refer us to The Rainbow Trust. I had heard of them before, as we’d done a fundraiser at work for them, and they did fantastic work. Their tagline, “supporting families with a seriously ill child”. (We were also referred to our local hospice, the fantastic Francis House, which unfortunately I had the same reaction to!).

Now, here’s the thing, my brain couldn’t process it – why would we be referred to a charity for seriously ill children? (Heidi was seriously ill, I just hadn’t accepted that yet). I almost instantly decided that I didn’t want their help. I didn’t want to be referred to a charity. I didn’t want pity. I didn’t want people to feel sorry for us. I could cope. I felt like I had a point to prove.

Of course, with the benefit of hindsight, it wasn’t the right decision to turn them away (to be fair though, I was seriously lacking in sleep, with post-pregnancy hormones still whizzing about and pretty much crying if someone said as much as “hello” to me.).

I reluctantly let the referral take place, and a lovely lady came to visit us once we were home with Heidi. I still didn’t feel like it was really for us though. I felt guilty taking up their valuable resources when there were other families who could make much better use of them. So, after a little while things fizzled out (probably subconsciously encouraged by me) and I was fine with that.

Fast forward a few months and the wonderful Reubens Retreat came on to our radar – but again, I still hadn’t learned! I went along to a Mum’s Pamper Day they had organised, for Special Needs Mums. It should have been wonderfully relaxing, but for me it was far from it.

Now I’m not a great chill-out person anyway, but all I kept thinking about was if Heidi was ok at home. She was with her Dad and perfectly well looked after, but I had terrible separation anxiety for a while, and I just wanted to rush back. I didn’t get follow up with Reubens after that, I still didn’t feel ready. I wasn’t in denial about Heidi’s diagnosis, I just, for some reason, didn’t feel like I fitted in (and that’s by no means any reflection on the people I met as they were super nice).

Thankfully though Reubens Retreat didn’t give up on me. A few years later they welcomed me with open arms (ah, the times pre-covid when we could give, and get, big hugs!) when I finally felt it was right for us to go along to one of their family events.

It was a Mexican Fiesta theme, and I knew a couple of other HIE mums who were going to be there. I worried that I was going to burst in to tears when I walked in (which I now know wouldn’t have been a problem at all, as emotions are always understood there!), but it was just a lovely atmosphere. Within five minutes Heidi had a false moustache and a sombrero on, and one of the fab volunteers had brought me and Steve a much-welcomed cup of coffee. Everyone we spoke to made us feel really welcome, and we were so well looked after, it was such a lovely event.

This was what I had been missing out on – for years! I kind of kicked myself for being so silly about it in the first place, but then realized it has to be in your own time, and when that is will be different for everyone.

What has changed my perspective even more is setting up our own charity. Until Heidi was born, I had never heard of HIE. I didn’t know anything about it, let alone how to come to terms with it. Thankfully I found a brilliant parent group on Facebook, where mums and dads, further on on their journey, were always there with a listening ear or words of advice. I’m not exaggerating when I say I dread to think where I would be if it weren’t for them.

As things settled with Heidi, and the years passed, I kept coming back to the thought of what happens to those families who don’t have Facebook, who don’t find support, or are trying to go it alone?

With the backing of family and friends, a bit of good luck and a “let’s give it a go” mentality (winging it is very much in our nature!) we set up Peeps, named after our very own Heidi-Peeps, a nickname she was given by a friend in hospital, and dedicated to supporting those in the UK affected by HIE.

We are registered as a charity. For the purpose things such as grant applications, bank account and constitution, we are classed as a charity.  I don’t really focus on what we’re called though and hope that people aren’t put off contacting us because we are a charity, like I was in the early days with The Rainbow Trust.

I’d like to think we are an extension of a person’s support network, a gentle ear when they need to talk, a safe space to voice fears of concerns, a group of like-minded people who totally “get it” and will have your back every day of the week.

We certainly don’t pity our families or feel sorry for them – they are some of the most resilient, amazing people we know, who also happen to have gorgeous kiddies! It’s a privilege to be involved in their journey in some small way, and if we can achieve just a fraction of what Reubens Retreat and The Rainbow Trust do, then we’ll be more than happy.

We’re also blown away by the generosity of people supporting us (and other charities), with donations, skills and time. Seeing the charity form the other side makes you appreciate just how many good people there are out there.

So yes, my perspective of charities has changed. I have learned a lot, I have seen the great work they do (big shout out too to Ronald McDonald House Charities who looked after us, like they do so many other families, during a hospital stay), the communities they bring together, and the difference they can make in an otherwise tricky world.

One may happen (hurrah! if so), but if it doesn’t, that can be ok too!

(Before you read on, I just want to make it clear that of course I believe every life/child is a precious miracle in itself, I’m not taking away from the wonder of that at all. Heidi is our biggest gift, and we are thankful for every day we have with her.)

The reason I wanted to share my thoughts though is this: so often I see posts about very poorly babies, just like Heidi was, who go on to prove all doctors wrong, hitting their milestones, walking, talking, getting 9 A*s at GSCE (are they even graded like that anymore, I may be showing my age!), despite the rockiest of starts at birth. These are great, uplifting, inspiring….all the positive words. But, I’ll let you in to a secret, sometimes miracles don’t happen, and life can still be all those things.

I hung to the idea of a miracle as I searched the internet while Heidi was receiving cooling treatment in the neonatal unit, only hours and days old. I dreamed it would happen as we brought Heidi home from hospital at just a few months old. I hunted out positive stories from other families as we adapted to our way of life.

All that made me feel better to begin with. We were going to be ok, Heidi was going to be ok (if you’ve read other blogs you may remember I actually thought she was going to be a racing driver at one point after reading about Nicolas Hamilton). But then, all of a sudden, it made me feel worse, a lot worse, as it didn’t happen. Had I done something wrong? Maybe I didn’t do enough physio. Maybe I should have paid for private therapy. Maybe I should have researched treatments abroad. I thought I had failed. I associated “ok” with “unaffected”, and that just wasn’t what life had mapped out for us.

You see Heidi (now 5 years old) in one sense hasn’t had the miracle outcome (go back to my first point, of course she is a little miracle to us). She wasn’t expected to walk – she’s non-mobile and wheelchair dependent; she wasn’t expected to take food orally – she’s fully tube fed; she wasn’t expected to develop a safe swallow – she has a tracheostomy to help manager her secretions.

At some point though, I stopped looking for the miracle. It wasn’t a defining moment, I couldn’t even tell you when it was, but it happened, and I started to enjoy Heidi for being Heidi.

Big miracles may not have been happening, but small developments were creeping in. Her first smile, that we waited over a year for, was like all my Christmases had come at once. I cried when our lovely consultant told us that she would go to school (I cried when she started school, I cried when her first piece of artwork came back from school, I am a big crier, and have totally accepted that!); I was beyond excited when we realized Heidi had started to react to both sights and sounds, having been told early on that she was visually and hearing impaired; I was fit to burst when she started to consistently blink in response to questions and choices given to her.

You see these seemingly small things became the big things to us. They were reasons to be happy and proud of our girl. I saw families of children similar to Heidi, living their best lives, and that then became my focus – to be grateful for what we had, and (try) not giving energy to what we didn’t (don’t get me wrong, that’s much easier said than done some times!).

Of course, I wish for Heidi’s sake that she didn’t have the challenges she does, but she is happy, loved, safe, and developing (even if sometimes it’s in the tiniest of ways).

We may not have had the miracle outcome you read about, but we have our girl, and for that we are thankful. Our “ok” isn’t what we had planned, but we’ll take it. We know things could be much worse. She has taught me more than I thought any daughter could, she knows nothing but nice things in these otherwise crazy time, and she is the toughest little cookie I know. Without realizing it, she has made a difference in this world, and that’s pretty impressive for a 5 year old.

For those parents who have had the miracle outcome, brilliant, it’s what everyone hopes for and I’m so glad it has happened for you. For those still waiting, I hope you are able to find joy and peace in the now, in the small (big) things, and that your “ok” can be a happy place. Our children are miracles in their own way.

You wouldn’t think that having someone chat to your daughter would be a big deal would you? I mean, people talk to kids all the time, don’t they?

Not so long ago we had two experiences in the same day that were poles apart. Heidi (non-verbal, non-mobile) wasn’t very well – we know what’s usual for her (chest infections are always a risk, with high heart rate and a spike in temperature), and luckily have open access to the local Children’s Unit. When she appeared to have something other than the norm going on, I rang up to see if we could take her in, but unfortunately, they were full, so suggested we went to A&E instead to be seen.

We were quickly assessed, which was reassuring, but then things seemed to move at a different, slightly alarming pace. Doctors came in, said they needed to take bloods, and I knew then that they would be in for a struggle – Heidi is notoriously bad to get blood from, those sneaky veins just go in to hiding! A different doctor and nurse appeared, and I started to feel concerned. This wasn’t our usual visit, and I was out of my comfort zone.

Heidi was getting more and more distressed, and I could no longer hold back the tears.

I asked them to stop – I had gone in thinking we would take some samples from her trachi and get some antibiotics, and here was Heidi in an absolute mess as a little human pin cushion. The doctor looked completely shocked as I asked him again to stop. I asked him what was going on, and if he could give Heidi a break. He took a step back, and then asked me what her name was. I was stunned; that was when my tears really started.

To be fair to him, he then explained that the first doctor had raised concerns that she was showing symptoms of sepsis, and as they didn’t know Heidi like the paediatric team do, I can understand why they took that approach. What really hit me though, and only as I looked back at the whole event, was that no-one actually spoke to Heidi. I get that A&E isn’t a place for pleasantries or longwinded conversations, but there wasn’t a quick “Hi Heidi, I’m Doctor….” or “ok Heidi, I just need to do x, y and z…”. I was talking to Heidi and trying to reassure her throughout, but it really upset me when I thought how scared she must have been and how I should have been the one to stand up for her. Imagine lying there not being able to say anything, or wriggle out of the way, it would be terrifying for anyone, even more so for a poorly kiddie.

So I made a promise – that I would never sit back again and wonder what was going on, I would never let anyone come in to contact with Heidi without them introducing themselves to her, and I would always ensure that Heidi was fully informed as to any procedures that needed to take place.

I was emotional and tired (like so many other SN mums and dads), but later that day my faith was restored.

We needed to be transferred to another hospital – thankfully nothing as serious as sepsis but they wanted her to be checked out by the gastro team (it turns out that she actually just had a lot of gas….but that’s a whole other comical blog!). We were told that we’d be travelling by ambulance, and to start getting our things together. Like so many others, we can’t travel light, so as I was frantically grabbing catheters, nappies, blankets and all sorts, two lovely chaps appeared and said hello to me and asked who we had here – yay! They then went over to Heidi, told her their names (I’m gutted that I can’t remember, memory like a goldfish!) and explained that we were just going to go on a little trip, and that they would “get her comfy while mum just packs your things”. They then told me not to rush, and gently moved Heidi, telling her what they were doing.

All the way to the ambulance they were chatting and as they set her up to the sats monitor in the back of the van they still told her everything that was going on and why. They asked me if I thought Heidi was comfortable and I’m sure they must have wondered why, yet again, I was crying! I told them that it was emotional, I was tired, and they were just being so lovely.

By the time we got to the next hospital I had managed to stop the waterworks and we were having a bit of a laugh about trivial things. They handed us over to the waiting consultant and said bye to Heidi and that they hoped she was better soon.

These guys got it spot on.

They didn’t stop doing their job, they didn’t slow down any part of the process, but they talked to Heidi the whole time, even though she couldn’t talk back.

If anyone reads this from a healthcare profession, or in fact anyone who comes in to contact with a non-verbal person, please please please just talk to them, like you would anyone else. Yes, it might feel a bit odd if you don’t get a response, but imagine if that person can understand everything of the world around them and you said nothing, they wouldn’t want to be left out, would they?

Thank you to those who have been so lovely – you may never know just how big an impact you have on someone.