I guess I’d describe myself as a kind of organised person (ok maybe not as organised as I’d like to be, but not doing too bad).

I love a list, I like to keep documents in order, and I work for a stationery company so it’s quite a good match that I like having things written down on paper.

Well, most things.

I guess the majority of people, at some point in their lives, have received bad news in the post.

It might have been your latest council tax bill, your overdraft statement, or notification that you have picked up a parking fine; seeing it in black and white is what makes it official, no matter how tempting it might be to hide it in amongst the mountains of junk mail that also come through the door.

The thing that I have found to be really difficult to digest though is seeing Heidi’s diagnosis in writing.

The first time I read “spastic quadriplegic cerebral palsy, severe global developmental delays, epilepsy, hearing impairments, visual impairments…gastrostomy, tracheostomy” it was like a punch to my stomach.

I kept reading it over and over, and each time felt more upset.

It was like a long list of things that were “wrong”, creating a big black cloud that was to hang above us.

I mean, with a list like that, there’s not much hope is there, right?

Wrong! There is so much hope. What the written list doesn’t demonstrate is that Heidi is now a very happy and (generally!) settled 4-year-old.

It doesn’t acknowledge that despite early struggles, she learned to smile at around 15 months old, and will now light up when she sees (yes sees, so that scuppers the visual impairment diagnosis) a familiar face or her favourite toy.

It doesn’t take in to account that she goes to school and is developing all of the time – sure, it’s not at the same level you’d see in other 4-year-olds, but that doesn’t mean it’s any less significant, in fact if anything I think we have learned to celebrate and enjoy every single achievement as we know how hard she has to work to reach them.

I can remember a consultant we met in NICU when Heidi was being cooled.

He was explaining about the brain scans that she would be having, and prepared us for the results – he said that our kiddies will do their own thing; what the results show on paper will not necessarily match up with how a child presents.

This was the biggest piece of advice we could have been given.

Of course, the “wait and see” is such a hard part of HIE, but it also means that there can always be hope.

So, my advice to you (if you want it that is!), is to yes, read the letter, then pop it in a file (preferably one with dividers to keep it in order J), and enjoy your child for what they are – the ups, the downs, and the mediocre bits.

They aren’t their diagnosis, they’re amazing kids, who are so much more than what’s written on the paper.

 

When I first found a parents’ forum online, within days of Heidi being born, that was dedicated to those affected by HIE, I felt an overwhelming sense of relief.

We were no longer on our own, and we no longer felt like the odd ones out (anyone who has had a full-term, slightly chunky, baby in NICU probably gets what I mean).

I had so many questions in those early, scary, foggy days. I was grasping for anything that would give me hope, and desperately wanted someone to tell me that it would all be ok.

The advice that came from so many experienced parents in the forum was that the first 12 months would be the hardest, and that it would get easier.

12 months? That seemed like such a long time, especially when we were just a few weeks in.

How on earth would we make it that far?

Somehow though, with a little luck and a lot of support, we did.

In fact, we’re now over 3 years in to our journey and those wise words ring true.

The first 12 months were by far the toughest.

It’s not surprising really – for families like ours there’s the trauma of what happened (HIE is a lack of oxygen to the brain which causes injury), the uncertainty of what the outcome will be, the fear of hospitals, the lack of knowledge, the questions, the learning, the sleep-deprivation, the guilt…it all adds up, and the way it impacts families can vary greatly.

I clung on to the magic “the first 12 months are the hardest” and almost counted down to the 13th month.

I felt like it should arrive with a fanfare, maybe a marching band, and balloons!

Of course, it didn’t – it just kind of sneaked past us, and before we knew it we were through the worst of the storm.

The things that I found most difficult to dealt with in the first year are now much more manageable;

I’ve come (closer) to terms with what happened;

I don’t care if people look while I’m doing suction;

I have prepared responses for unexpected questions from often well-meaning onlookers;

I take pride in celebrating Heidi’s developments, no matter how small they may appear to others;

I can, mostly, talk to friends without bursting in to tears (but not yet managed a full episode of DIY SOS yet!);

I have the confidence to challenge healthcare professionals and know that my instinct is often right; I don’t give two-hoots any more if people see me as “that mum” and will take on any battle if it has Heidi’s best interest at heart.

Whilst lots of things have eased, other things have taken their place in the “to worry about” folder in my head;

Heidi’s growing so it’s not as easy to scoop her up and wander round with her;

her head control is something we’re still working on so we’re now struggling with suitable seating when not at home,

unless she stays in her wheelchair which presents it’s own accessibility challenges;

she is now too big for the baby-change facilities when we’re out and there’s unfortunately a real shortage of the amazing Changing Places which are suitable for children and adults with additional needs;

her muscles are growing and her hips are becoming displaced so there is concern she may experience pain and need surgery further down the line.

The list goes on.

So many uncertainties still, so many questions and so much to learn.

What we have learned though, on this crazy journey, is that these kiddies can do amazing things, and you adapt, and you cope (and there is support out there if you need it, which is so important).

You can’t predict what will happen, but you also can’t underestimate their potential, and you can’t quite believe just how much love you can have for one little person.

I think some things just go with the territory of being a parent.

The worry won’t end.

My friends with children (neuro-typical) aren’t worry-free…they range from potty-training troubles, to sibling rivalry, to mobile phone demands…may seem insignificant compared to some of the things an SN family will be losing sleep over, but just as real and to that person, and just as important.

It’s not always easy, and others sometimes ask “how do you do it?”.

You know what?

I have no idea!

I’m in such admiration of the other parents I see and take guidance from, and I don’t put myself in the same category.

You do what you need to do, and you do your best.

If you are just starting on your journey then hang on in there…I wish you lots of best wishes (and a little fanfare at month 13!).

Who cares about carers?

Now I don’t mean that in a flippant or sarcastic way, but the upcoming Carers Week has really got me thinking.

Before I had Heidi, when my knowledge of the special needs world was limited, my idea of a Carer was someone who popped in to check on, feed, and maybe dress an elderly person.

I always imagined that they were underpaid for the job that they did, but felt very grateful that there were people out there who could do that kind of thing, as I knew I couldn’t.

At least that’s what I thought!

Fast forward a few years and I am now classed, I guess, as a carer to Heidi, who has complex needs.

But I don’t see it like that. In my eyes, I am a mum to a little girl; I see my SN friends in the same way as my non-SN friends, being mums and dads to amazing kids.

Our roles though are considerably more that “just” being parents (as if that wasn’t enough on its own!).

We are advocates, physiotherapist, administers of medicines, dieticians, trained suction users, emergency trachi-change experts, play-mates, the list goes on.

Thankfully the UK government recognises this extra responsibility and offers a payment to (eligible) carers.

Now, my friends will be jealous when they find out how much it is… drum roll please… carers can claim £64.60 per week, as long as they can demonstrate they do at least 35 hours of care.

I’m no maths genius, but that hourly rate doesn’t equate to all that much, especially considering what’s involved in looking after these little beauties.

One thing to flag is that you can’t claim carers allowance if you earn more than £120 per week – because obviously then you would be far too rich and have so much money that you would end up spending it frivolously and living a life of luxury.

No risk of that happening to us as both Steve and I work.

We both used to be in fulltime employment, before Heidi, and now work part-time to share the care and responsibilities.

I know that we are lucky for now, and that things may change in the future – friends have had to give up work completely, reduce hours significantly, or make other sacrifices, without which family life would just not function.

After considerable challenges, we managed to secure a Personal Health Budget (PHB) so that we are able to employ additional carers.

Our allowance covers 2 night shifts per week and again, we are most grateful for this.

It seems to vary from region to region as to how many hours families are entitled to, but the general consensus seems to be “not enough”.

It’s not like we’re being greedy, but imagine having a new born by, who is up in the night, needing feeds, nappy changes, and cuddles.

Now imaging that going on for 3 years, and beyond, with additional needs. Not too much to ask for is it to have a little help?

When the help does come in the form of paid carers, then they have to be fully trained.

I get this, and I wouldn’t want to leave Heidi with anyone I didn’t believe to be fully competent.

But no-one trained me, no-one showed me how to lift her as she’s got bigger, and when I asked recently if we could have the same safe handling training that our paid carers have, I was told no.

It’s something that we’re still looking in to – children get bigger, and lifting them can put pressure on our backs and joints.

I worry that if I was injured, then who would be able to look after Heidi?

Caring for the carer is so important but often something that is just pushed down the extensive list of things to do.

I hope that one day soon the system will be reviewed to make it fairer, to offer more support, and to recognise what is actually involved in the role.

In the meantime though, I’d just like to do a big shout-out to all the carers.

From what I can see on the old Facebook and Instagram, there are people out there who are doing it way better than me…I’m just (as usual) winging it!

We were still in hospital – Heidi had been born, full term and after a healthy pregnancy, but suffered a HIE (hypoxic ischemic encephalopathy) event shortly after birth.

Her brain had gone without oxygen and, as we later found out, there was significant damage.

The first medical term that was given to us was HIE.

I did what no-one in hospital should do, I googled it.

Having never heard the term before I didn’t have a clue what it meant.

We’d been given a booklet from Bliss that had some information on it, but I wanted to know exactly what the prognosis was.

Now with hindsight, I fully understand that no-one can tell you how the future is going to pan out, and each child is wonderfully different, but I felt like I needed something more than a leaflet; I needed to grasp hold of a thing, a concept, hope.

When Heidi was about 4 weeks old we were transferred from NICU to the Children’s Unit at our local hospital.

We were called to a meeting with the consultant to discuss Heidi.

This was a no-nonsense meeting and boy did some of the comments hit me hard.

Words like “severely disabled” and “advanced care plan” rang in my ears.

Something good did come out of it though – the phrase “likely to be diagnosed with cerebral palsy” was used.

Now don’t get me wrong, I’m sure there’s news that parents would be happier to hear, but for me this made sense.

I had heard of cerebral palsy, and because it was slightly familiar it didn’t seem as scary.

When we got out of that meeting, Steve (hubby) said “Lewis Hamilton’s brother has cerebral palsy, and he drives race cars”.

What? Really? Heidi might go on to be an F1 champion?

I knew it, I knew it was going to be alright!

Ok, so I may have got a little carried away there, but my google searches soon switched from “HIE” to “Nicholas Hamilton Racing Driver”.

In between watching the monitors that were hooked up to Heidi, I was watching YouTube clips of Nicholas, an inspirational guy who had beaten the odds to overcome his CP challenges.

It lifted me and gave me hope.

As Heidi’s got older, even though we are a “never say never” type of family, I’m pretty sure that she won’t be able to drive.

Our expectations are realistic and we’re hoping that one day unaided sitting may be achieved, but we take it a day at a time.

Our aim is for her to stay as healthy as possible, and to be surrounded by love.

Funnily enough though she does seem to enjoy watching car racing.

We often go as Steve volunteers on the Rescue Unit, mainly at Oulton Park and sometimes we’ve gone down to Silverstone.

She may not be behind the wheel but with the right pair of ear defenders she can certainly still be in on the action.

I know that for some people, getting a diagnosis, whether its cerebral palsy or something else, can be a really difficult time.

For us we found that it made life easier in terms of explaining how Heidi was, and for accessing the right support, but we don’t use it as a label for her.

She’s Heidi, and she isn’t defined by her cerebral palsy.

Our journey may have taken us on a different track to Nicholas but I often think of how he, unknowingly, gave me that glimmer of hope on a dark day.

If you ever get to read this Nicholas, thank you!

Whilst Social Media is going crazy with pics and videos of sledging and snowmen, we sometimes find ourselves in a very different world.

Getting out and about with Heidi (quad CP, trachi, gastrostomy, non-mobile, and the usual list of extras!) can be tricky at the best of times; there‘s no such thing as travelling light!

Wherever she goes she has a suction machine and catheters, feed pump, emergency trachi kit, medicines, then the usual change bag, toys etc. with her.

So, the idea of getting stuck anywhere is pretty daunting.

On Wednesday, the bad weather that had been forecast hit.

We had snow.

Everywhere looked pretty, but my practical head wasn’t so pleased.

I’m often somewhere in the middle between trying to live a “normal” life (I don’t really like that word but hopefully you know what I mean) and being mindful that Heidi does have complex needs and sometimes adjustments have to be made.

The snow however got me thinking all sorts of things; what if it comes down really quickly and we get stuck coming back from school?

Could I push the wheelchair up the hill and carry all the bags on my own?

Would anyone be about to help me?

What if the suction machine ran out of battery?

What if we have to stay over somewhere and I don’t have enough feed or medicine for her?

What if school think I’m an over-reacting Crazy Mama for keeping her at home?!

I was therefore most relieved when the text came through the following day to say that school was closed due to the extreme conditions.

Phew.

Decision made and I could stop debating all possible outcomes and worst-case scenarios.

Our snow day was however pretty uneventful.

In fact, it was pretty much like any other day at home.

It was far too cold and blustery to give Heidi a taste of the magic (cold weather can make her quite chesty, and I’m clearly a bit of a wimp), so instead we sat and looked out from the cosiness of the lounge.

I briefly felt sad that she wasn’t able to sense the excitement that a day off school should bring, but then it hit me that she is going to school (when weather permits).

That in itself is enough.

It’s something that at one time we didn’t think would be possible.

We didn’t think that the storm we experienced early on in Heidi’s life would pass.

We didn’t think that we would see sunshine again.

We didn’t think that we would ever laugh or smile.

We do. We do a lot.

So yes, being stuck in for a few days may not be ideal, but we’ll use that time to count our blessings.

Probably should do a bit of housework too…!

Hope you are all staying safe and warm!

Roll on summer hey?

Nothing too unusual there I guess, having a baby is a pretty big deal.

I’d prepared as much as I could – read all the books, been to the antenatal classes, given some plinky-plonky yoga a go ( – totally out of my comfort zone!).

I’d even thought about how I was going to break the news to my mum once baby arrived.

I was a first-time mum, she was a first-time grandma.

This was going to be the best phone-call ever!

Only it wasn’t – it was the hardest I have had to make.

Trying to stop my voice from shaking as I explained that we had had a little girl (at 11pm on Mothers’ Day!), we called her Heidi, that she was now a grandma, but that our precious arrival had been whisked to NICU for cooling treatment and that basically I didn’t have a clue what was going on.

(Later diagnosed with HIE, hypoxic ischemic encephalopathy – a lack of oxygen to the brain).

Heidi wasn’t with me which was hard, but I think for my mum it was even harder.

I may be a grown up but I’m still her little girl and she knew I was broken.

Left completely helpless at the end of the phone must have been so awful.

It’s only when I look back now that I fully appreciate just how tough those early days and weeks must have been for her.

I was in the thick of it (with hubby Steve), and we knew minute by minute what was going on.

We were talking to doctors, learning from nurses, and getting our heads round the situation.

My Mum (as well as my Dad, Step-Dad and Steve’s Mum and Dad) were outside of the bubble.

We tried to keep them up to date but sometimes the hours disappeared and you realised that instead of texting or phoning them, you had been watching the monitors as the numbers went up and down, keeping everything crossed that the alarms didn’t go off.

Just like I wanted to help Heidi in any way I could, my mum wanted to help me.

To begin with that was by giving big hugs and crying with me.

As we moved to the Children’s Ward as Heidi stabilised, it was sitting with me and bringing in sandwiches.

When we came home (after 8 weeks in hospital) it was joining me in a celebratory glass of bubbly (badly timed as it was when the Health Visitor called round, oops!), and helping with the ironing.

As the time has gone on it’s by being gastrostomy and trachi trained so that she can look after Heidi when I have to work.

The biggest help is that she has laughed with me.

Sometimes at the most inappropriate times, sharing a funny moment that only the two of us would get, but we have laughed so hard that tears stream down our faces and our sides hurt.

I love that.

I love that despite the tricky journey we have found ourselves on, we can still find joy in things.

I love how she is Grandma Glitter to Heidi (a nickname that stuck after her slightly sparkly bronzing powder left its mark).

I love my mum.

Being a Grandma may not be as she imagined, but it’s a role that she has embraced and is great at.

I still think that life, the situation, is easier for me that it is for her.

I know that I’m ok if that makes sense, but I guess it’s always a Mum’s job to worry.

Wishing all the mums and mums’ mums a very happy Mothers’ Day – wherever your journey may take you, I hope you get through it together.

I’m actually called Sarah. I have a first name and a surname, but I don’t seem to use them any more; many people I come in to contact don’t use them either.

I can remember so clearly the first time this happened. Heidi was a couple of days old, in NICU, and Steve and I were trying to catch a little bit of sleep in the parents’ room.

My mobile rang, I answered it.

“Is that Heidi’s Mum?”

Who? I actually thought they had got the wrong number.

Maybe it was just the tiredness, or the blur from having a baby in special care, but I didn’t relate to this new title at all.

I was kind of in shock from this call for quite a while; going over it, wondering if I should have felt immediately that of course I was a mum, Heidi’s mum, and then feeling incredibly guilty that I didn’t.*

Over the following days and weeks, more people said it, “Heidi’s Mum”, or sometimes just, “Mum”, – doctors, nurses, health visitors…this way of addressing me felt so alien, and to begin with I used to reply, “Yes, Sarah”, in the hope that they would use my name.

They didn’t, and so, “Heidi’s Mum”, I became.

Now, I fully understand that the professionals must see so many parents and carers, and it’s probably impossible to get to know and remember all their names. I get that.

Maybe though it would be nice just to be asked what you’re called, or even be told, “So sorry, I’ve forgotten your name, but don’t want to just say mum!”.

I wouldn’t be offended if they forgot my name, or got it wrong, and to be honest I would probably answer to pretty much anything!

I am now completely guilty of using, “Heidi’s mum”, as my go-to phrase if I need to introduce myself, or explain who I am.

Everyone knows Heidi (even people we don’t know seem to know her, I’m guessing from the blogs), and I now feel a sense of security from being her mum.

She’s the biggest part of my life.

Yes, I can remember what things were like before Heidi, when I wasn’t a mum, but I don’t want to think of life without her.

It may sound strange, but I think I am more confident as, “Heidi’s Mum”, than I am as just, “Sarah”.

I will stand my ground for things I believe in, and not worry so much about upsetting people (ok, I still do worry, but much less than I used to!) if I am fighting for something Heidi needs.

I am her biggest advocate, her voice, her therapist, her playpal, her friend, her mum. Heidi’s mum, and I’m more than happy with that.

*Just to note, it was my mum (Sarah’s Mum!) who reassured me that feeling like this once you’ve had a baby is completely normal. If you’re feeling like that right now, please talk to someone.

Those bloomin’ hormones, tiredness, and worry can do so much to our heads, but there is help out there so please grab it if needed.

The other night, I was watching telly.

I can’t remember what the programme was, but part of it, or it may even have been an advert, showed a group of teenagers (all very slim and attractive) having a whale of a time at a beach party in sun.

In my head I presumed that none of them had a care in the world, that they were the happiest they could be, and that life for them was a breeze.

It was at that point that I had the thought. I wanted to go clubbing in Ibiza!

Now, just to put this in to context – never, ever in my life have I wanted to go clubbing. It’s just not me.

It’s certainly not me now that I am fast approaching my 40th year, a special needs mum and most definitely not a member of the “slim and attractive” category!

I’ve enjoyed nights out with friends (pre-baby), but these were at at cheesy local pubs or bars, and if I’m brutally honest with you, I felt much more at home when these nights out turned to nights in and friends (armed with wine or prosecco of course) would come round to the house.

So why, you may ask, did I all of a sudden want to up sticks and be a raver?

I think it’s because the girls on the telly looked so carefree, a stark reminder to the responsibilities that I now have, not only as a mum, but as a mum to a little one with complex needs.

As a special needs family, we can’t be spontaneous (this isn’t necessarily a problem for me – I’ve always been twitchy if there isn’t a plan!).

We can’t just decide to pack a bag, hop on a plane, and head to the beach. We can’t take out regular travel insurance (the list of medical needs to declare is pretty lengthy).

We can’t hire a typical family car in a foreign resort (has to be wheelchair accessible).

We can’t be away for too long in case we run out of meds. We can’t venture away without knowing where the nearest hospital is, just in case.

You get the idea?

We are very fortunate though in that we can go away in this country, and have a caravan that can be loaded up with suction catheters, feed bags, trachi supplies, sats monitor and so on.

I know this in itself wouldn’t be possible for some special needs families, so I am very grateful that its do-able for us at the mo.

The lead-up to a holiday (and by holiday, I mean weekend break within about an hour’s drive from home) for us involves lists, lists and more lists.

I need to feel reassured that we have planned for every eventuality – hot weather (slightly optimistic for the UK!), cold weather, being unwell, several changes of clothes in case of spillages – although inevitably I usually manage to forget something.

As long as it’s something I can buy in a supermarket it’s not too bad – if only Tesco’s started doing a range of SN supplies hey?!

There are of course advantages of holidaying in this country; no need to remember passports, or try and get by in a different language; no queuing to get through security at the airport or squeezing your knees into a cramped seat on an aeroplane; no immunisations or jetlag (although for many SN parents that may not make a difference, sleep is so rare anyway!).

The biggest plus is there are so many beautiful places to visit, with more and more being adapted to meet the needs of everyone.

The Changing Places campaign is doing a great job in promoting the need for accessible facilities and thankfully lots of attractions seem to be realising how important these are for people.

Let’s hope this grows even further.

Having had a bit of time to reflect, I can safely say that, for the time being at least, I’ll put my Ibiza idea on hold.

You never know though…one day…just maybe…!