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.

A friend of ours recently gave birth to a beautiful baby girl, and, as so many things do these days, it got me thinking.

After I had Heidi, almost 5 years ago, I really struggled to be around expectant mums, or their gorgeous new arrivals.

It brought so many emotions from my own experience to the surface – of course I was happy for them, and relieved when the news came through that “mum and baby are doing well” but it was a harsh reminder of what was taken away from me and Steve.

That in turn then brought feelings of guilt that I shouldn’t be thinking that way, that this was their time, which made me feel rubbish, which then made me realise how lucky we are as some people have it much worse, which made me feel guilty again, and so the cycle continued.

But, at some point, and I can’t tell you exactly when, things changed.

I felt myself sharing the joy of baby news, without having to force anything, or take a few moments to gather myself together.

I was also able to remember my pregnancy (bloomin’ loved being pregnant!) and talk about the birth without breaking down in tears.

I clearly remember pre-Heidi, how I had it all planned out in my head (massive lessons learned there hey!).

I was going to be a chilled-out mum, with firm but fair principles. I was going to hug my little one every day and tell them how much they were loved.

I was going to have fun. I was going to bake and do crafts. I was going to cheer them on at every school event. I was going to support them in whatever they wanted to do.

I was going to bring them up to be kind. I very much wanted to be the kind of mum that my own mum was, and still is, to me.

All that changed in an instant when Heidi was taken so poorly within the first hour of being born.

My plan went out the window, and we had to start from scratch. For a long time after having Heidi, I didn’t feel like a mum at all, let alone the kind of mum I wanted to be.

I was a nurse, a physio, a therapist, an administrator, an advocate. It wasn’t what I signed up for and I was scared.

Over time though, and with the right support, we settled in to a routine.

We learned about Heidi, we worked as a team, and before we knew it we started to be happy.

It feels a bit strange saying that, as I think sometimes people look at families like ours and feel pity or wonder how we do it.

Don’t get me wrong, there can be tougher days, but there are also days where you feel your heart is full to bursting. Heidi has taught me so much.

Of course, I wish things were different for her, that she didn’t have extra challenges, but she doesn’t know any different and is such a happy and loved little girl.

She has shown me that I am exactly the kind of mum I was meant to be.

I’m Heidi’s mum, doing all the things I planned to do (sometimes just in a slightly adapted way) and I wouldn’t change that for the world.

These days we frequently hear the phrase “it’s ok not to be okay”, and it’s often reassuring when you hear of others who may be having a tricky time, especially when so often social media only portrays the “perfect” images of life.

Life as a family with additional needs may feel some way off being perfect – wonderful, loving, rewarding? Yes. It can also be tiring, isolating and challenging.

It’s ok to not be ok, as you can take your time, get support, and find your way to bounce back.

But what if you can’t? I can’t help thinking about those people who are not ok.

I don’t mean as in having a bad day, or a tricky week. I mean really not ok. What if you have to make the heartbreaking decision to accept that you are not able to look after your child in the best way possible, either for their sake or yours?

I’m sure, like me, you know of a family, or families, who have fostered or adopted children, some with additional needs.

I’ve seen it for myself the love and warmth that these children get, and watch on in admiration at the adults who welcome them in to their home as their own.

I am sometimes in awe as to how they do it but thank goodness they do.

I can’t help but wonder what may be happening in the other side of the story, with the parent/s who no longer have their child with them.

As a mum of a little one with extra’s (cerebral palsy, tracheostomy, epilepsy, dystonia, the list goes on), I’ve heard the phrase “God only gives special needs children to special people”, and whilst the sentiment is nice, it just doesn’t sit right with me.

I get that’s a personal opinion, so feel free to disagree, but if that were truly the case, then no-one would struggle, no-one would have to admit that they aren’t actually ok.

The world of additional needs is one that I didn’t really know much about before I had Heidi, and it’s like a secret club that you suddenly find yourself in.

You might not have chosen to be part of it, but it’s pretty cool if you find the right people, and there is so much support out there.

I really hope that those parents who have had to say they aren’t ok are in their own club too, where, just like us, they aren’t judged, they can talk to people who “get it”, and they can find a way to their new ok, whatever that may be.

Summer holidays. Time for much excitement as children break up from school for what feels like a ridiculous number of weeks. Time for trips away with family or friends, to the seaside or the country side, or to the hustle and bustle of a city. Time for holiday clubs and activities away from Mum/Dad. No? Not sounding familiar.

Don’t get me wrong, school holidays can be lovely, and spending time with Heidi can be lovely.

It can also be bloomin’ hard work! Keeping her entertained can be a challenge, getting out and about can sometimes be tricky (hurrah for the venues that have Changing Places by the way!), and maintaining the same energy levels that her teacher and one to ones have at school can be nigh on impossible!

We also don’t have the luxury of holiday clubs. Friends’ children are bounding off to basketball camp, or dashing off to dance school – they sound fantastic and must be so much fun, I’m not in any way taking their enjoyment away from them.

Heidi is non-mobile though, so there are restrictions as to what activities she can do, but more importantly, like many of our kiddies with additional needs, Heidi has to be with someone dedicated to her, who knows her well, and in our case, is fully trachi and gastrostomy trained. This somewhat narrows our circle of support. Add in to the mix the fact that me and Steve both work, and the 6 weeks’ “break” across July and August really does start to test our parenting skills as well as our patience.

This sounds a like I’m grumbling, doesn’t it? I’m sorry, I don’t mean to.

We have a lot to be thankful for, but the school holidays are just another reminder of how different our life is.

Everything has to be planned, and it sometimes feels restricting. We do of course do our upmost to make sure that Heidi has fun. We take her to as many places as we can, see friends, take in different sights and smells.

I sometimes have a moment where I wonder if she does have a nice time, but then you see her smile (we waited so long for that smile!), or notice the look of concentration on her face as she’s focusing on a particular sight, and it’s lovely.

She may not be able to talk, but she can certainly communicate and once you’ve tuned in to her, her blinks and eye-brow raises can really say so much.

I would love to be able to set up a holiday club for children like ours – fully accessible, all inclusive, fun and supportive. There’s the slight issue of being able to fund this, and I’m guessing there may be a few health and safety or OFSTED hurdles to jump over, oh and we’d need to find fully trained staff/volunteers to run it, and a suitable venue of course, but I’m not defeatist! If you know of a place like this that already exists then please tell me – I want to move nearby!

So yes, in summary, our school holidays are different to most, but that’s ok. It’s time we have together, and for each day of that I will remember to count my blessings.

Well…..that was the question that caught me off guard a little! It first came with a nod to Heidi, when she was about 6 months, and more recently as I was chatting about her (now 4) and her additional needs.

Did I think we would have another baby?

I know people ask these things with genuine interest / care (most of the time!), but I do think there needs to be a little caution as you never really know the circumstances a family may be going through.

My honest answer was “I don’t know” but it’s something I have pondered long and hard over, on many occasions.

When I was younger, I wanted to grow up, get married and have 2 children.

As I got older, I realised that life is rarely that straight forward.

I was in my late thirties when I met my now husband Steve, was very fortunate to fall pregnant quickly when we decided we wanted family, even though I was classed as a “geriatric first-time mum” (ouch!), and counted my blessings every day of my healthy pregnancy.

When Heidi was taken so poorly just after she was born, our world was tipped upside down.

My ideas of how having a baby would be were nothing like our reality, but we did what we needed to do to get through each hour, day and month.

Once we were home and settled, I kind of thought about having another baby, and really thought it would be a good idea.

I think part of that was so that I could have the “normal” experience of having a baby – I hope that doesn’t sound selfish. I love Heidi, lots, but her start in life had been tough on us all and I thought having another would help ease some of the pain.

I also thought that adding to our team, with a sibling, would be great for Heidi too – she would have her own little buddy, who would be around longer than us (I do worry about when we’re not here, but that’s a whole other blog!).

But that in turn made me think about how that second child would feel – they might see things that would be upsetting, might feel left out as Heidi needs so much of our attention, may resent us as parents.

I’ve seen other families though and the siblings are some of the most well-balanced, loving, caring little people you could wish to meet, so that dispelled my theory.

Of course having a baby requires a certain, ahem, things to happen – and without wanting to speak on behalf of other SN parents, quality alone time can be rare.

Our lives are busy with everything Heidi-related, and at the point she is settled and asleep, I’m either busy sorting out the meds, feeds, clothes, appointments etc. for the following day, or wanting to get some sleep myself (or occasionally writing a blog!).

Add in to the mix having a carer 2 nights a week, and any form of romance is way down the list.

I also joke about being too old and fat to have another baby – I feel like I have aged so much since having Heidi, and have certainly put the whole exercise regime I used to love so much on the back-burner, but then I also remember how I already cope with a lack of sleep, so would having extra company on the night-shift be so hard?

We had, at one stage last year, seriously talked about fostering.

It’s something we would love to do but the commitment is just too big at the mo; foster families have to have regular meetings (totally understand why), and can face their own challenges, we just didn’t think it would be fair on anyone – plus I have no idea how to look after “typical” babies, give me a feeding tube or trachi and I’m fine! – maybe we’ll come back to in the future.

Hats off to those who do it, what a gift.

So, for now, we’ll let fate decide, happy as our team of 3.

My answer remains as “I don’t know”.

Much safer to ask if you think we’ll get a dog, you’ll likely get a resounding “yes” (from me at least!).