The conversation that follows feels like a punch to the stomach, winding you.

Emotions all over the place.

Replacing the receiver, hearing the words over in your head.

It was good news today, for once.

Our application for continuing healthcare support was provisionally agreed at a meeting this morning.

Our lovely community nurse who’s been with us since Sam was 14 weeks old called as soon as she heard.

Good news.

So, why can I not stop crying?!

It’s very simple.

It’s because I am sharply reminded that while I see him as nothing more than a wonderful, perfect child, the reality is that he is a very poor one.

Uncontrolled epilepsy is deemed to be when someone has more than a couple of seizures in a month; Sam has around 10 daily.

We’ve just gotten so used to coping, to managing the situation, that it’s normal to us and when reality bites it doesn’t just nip. It takes chunks out of us.

I’m so relieved that we’ll finally get the support we’ve desperately needed for so long, and heartbroken that we need it at all.

I’m winded by the tidal wave of adrenaline surging through my body currently, my legs are shaky, and I can’t think straight.

All I want to do is get in my car and drive as fast as I can home to scoop my child into my arms and tell him just how much I love him.

So he’ll never, ever be in any doubt that he is my world.

That I don’t love him in spite of his difficulties, but that they make me love him so much more than I ever imagined possible because I see his strength and love of life in the face of all his battles.

I see his courage.

I could do with a good dose of that right now.

It was truly terrifying.

Since Sam was born, I’ve been there.

I’ve held him through as many seizures as humanly possible, for blood tests, lumbar punctures, bumps and scrapes when he’s had a seizure and bitten through his lip or banged his head/knee/arm during the throes of one of the wretched things.

While not his sole parent and sole carer, due to work etc it has more often than not fallen to me to be nurse, therapist, dietitian, and advocate.

So, handing over the reins to someone else was… difficult.

And his wonderful carer totally got it.

I already like this lady and the other lady who comes to care for him.

We’ve only met once, yesterday afternoon, when they popped over to say, hi, introduce themselves and find out a bit about this special little man they’re going to be looking after while Mum and Dad are at work.

Sam likes them too.

They have a warmth about them, and a manner that was so gentle that even Sam couldn’t resist giving a little smile.

For parents of neuro-typical kids, it’s tough letting your child go with someone else, think the first day at school, or the first time they’ve gone out with a friends family….

But for us, the parents of non-neurotypical kids, there’s the added need to explain ALL about our kids.

Their needs, seizures, movements, how they communicate, how they can let you know that they like/dislike something/are in pain.

It’s scary leaving someone alone with our child knowing that the child in question may well have a severe seizure and stop breathing, or may choke on vomit during/after a seizure and require emergency medical attention.

Although we *know* these are trained carers and will take everything he can throw at them in their stride, it is hard to relinquish that caring role and allow someone else to take the strain, albeit just for a few hours.

I find myself hanging around, not quite ready to leave my boy…

I’ve almost become dependent on HIM, not the other way round!

However, Daddy is now home and all is well…

Sam behaved like a gentleman and didn’t have any major seizures, and by all accounts has had a fantastic morning. I’m thrilled that we’ve got this support, allowing us to be parents not just carers.

We get some financial help with covering the cost of the service from social care through direct payments but they are nowhere near sufficient to meet the costs fully.

The sad thing for us is that as Sam is only 4, our direct payments are deemed to be for carers respite, NOT childcare.

And yet, our boy cannot access ordinary, mainstream childcare and is too young for special needs holiday clubs.

For us, it’s a price worth paying, but many others don’t have that choice… surely its about time childcare for SN children was given the priority it so desperately needs?

Sam and I certainly think it is x

We are permanently tired, aching from lifting, exhausted from sleep deprivation.

And that’s the time our minds go for a walk into the darker recesses of our psyche and start to poke things that should be left to sleep.

Having no firm diagnosis is incredibly hard and it is too easy to think this could be due to something you did, or didn’t do. That if only you’d done x, your child would be OK.

At times my mind is a whirlwind of grief, anger, fear, disappointment and loss.

People told me and Sam’s Dad that time is a healer, we’d overcome the grief and move forward as a new family of three.  Time does heal and it has done, but I don’t think we will ever fully stop grieving.

Because every so often when a friends child does something new, or when my wonderful niece wins a race at schools sports day, there’s a little voice in my head that takes a deep sigh and whispers, ‘what if….’.

The other one is more self-pitying, ‘if only…’

This weekend we had my family round with my niece. This child is incredible, she adores her cousin and doesn’t view him with pity, or see him as anyone other than the wonderful little boy he is.

She keeps telling me she’d really like MORE cousins, and I keep thinking right.

But the truth is it hurts to see how much less Sam can do than his peers.

And the, “What ifs..?” keep coming to haunt me.

It’s getting a little easier now, after finding out that Sam almost certainly has a genetic basis for his issues I know it’s not specifically something I did that caused this…

But the guilt is still crippling because I know that we gave him his genetic makeup. And with it any faulty/damaged genes that he may have inherited.

It feels like I’m on some sort of merry-go-round, where my brain struggles to accept that some things just ARE, and all that can be done is to accept them and work with it.

Ever thankful for Facebook, today it has given me more than a little bit of peace – being able to chat to people I may never meet but who share the same battles and triumphs as me and mine is more than cathartic.

It’s essential to my sanity.

And today there was a little link to remind us of ways we find happiness daily; many were lovely and simple, live well, eat well and be kind to yourself being the main focus.  And it got me thinking.

Over the past few years we’ve said goodbye to far too many beautiful, brilliant people (both children and adults), often taken before their time, and while that heartbreak reminds me of how fragile we all really are it also serves to reinforce how precious life is.

I get tired of people who constantly comment on how hard our lives must be.  Or how difficult it is.

Yes, it is difficult and, frankly, it’s all but bloody impossible to keep going at times; but there is so much joy, laughter, and fun in there too…  I’m bored of being miserable.

So, here’s 10 things that make me happy:

1. Spending time cuddling my boy. Nothing more complicated than feeling his little body close to mine, feeling the rate of his breathing and smelling this perfectly formed little miracle nestled in my arms.

2. Walking the dog. Just walking really, as long as its outside in the fresh air.

3. Jumping in puddles. Sorry, but there is a kid inside me that still *loves* jumping in puddles. If I can splash my husband at the same time, even better!

4. Reading. No, I do not mean Facebook. Or Twitter. I mean ACTUALLY reading. Just allowing myself to get lost in a book is therapeutic enough.

5. Doing some form of craftwork. OK, I have my own cottage business doing jewellery and crafts, but the rule is simple. Find something you enjoy doing and do it.

6. Watching a movie. With popcorn. The popcorn is non-negotiable.

7. Breathe. How many of us actually breathe properly? I mean *really* breathe – till you feel like you’ve filled your body with air, then slowly breathe out again? Try it. It relaxes all the main core muscle groups and tops you up on oxygen. Can’t be a bad thing. Ditto to singing

8. That smell after rain.

9. Spending time with my other animals. Not just the cats and dog, but the fish and the chickens. If I’ve had a really rough day, 5 minutes spent watching the chickens as they happily cluck their way around the garden always makes the world feel like a better place.

10. Being kind to others. Sometimes a simple smile at a stranger is all it takes to turn someone’s day from bleak to brighter. Be mindful of other peoples moods, they may also have just had the day from hell.

There. Feeling better about life already.

It’s a lonely ol’ life sometimes.

Between near constant phone calls to agencies, doctors, social care and nursing teams and the rest, it’s not really occurred to me just how little I’ve actually seen of other PEOPLE this week.

Sure, I’ve spoken to a lot of them (shouted at a few) but not actually SEEN anyone other than my husband and son.

Even at work.

And despite what people say, the majority of people we interact with in our working and personal lives outside of special needs really don’t have a clue what life is actually like for us.

The very people who wax lyrical about how they want to help, and that we just have to let them know what they can do to make life easier are usually the ones who put the obstacles in our path.

The trouble is; they just don’t get it.

They aren’t being malicious, it’s just that they have no clue.

For example, yesterday I found out that Sams school holidays are 7.5 weeks long this summer….

7.5 WEEKS.

I have absolutely no idea what we’re going to do to ensure he’s cared for and safe during that time.

And yet somehow we have to carry on working because through no fault of our own we’ve had to use all our annual leave allocation up already due to hospital appointments etc.

At our most recent meeting, our lovely nurses and social worker were shocked that we’ve had to use our holiday allowance to cover hospital appointments etc; no-ones forced us to do that though, but we don’t have a choice as taking unpaid leave isn’t an option.

It is becoming increasingly difficult to juggle life and work.

Outsiders to this life do not understand what an impact special needs has on the whole family, and that needs to change. We cannot just ‘switch off’ and leave our home worries at home – they are part of us and come with us wherever we go.

Having family support makes a phenomenal difference, all too often however that support is not there or is there on a ‘we only want the fun parts of seeing the child, not the difficult bits’ basis.

Sorry, my son has severe epilepsy.

The seizures, medications and therapies kind of come together with him as part of the package.

Sadly.

It breaks me that he has this battle to fight, and it makes it so much worse when I’m having to battle for even basic carers support and rights wherever we go.

I love working, I love my job, but I’m being torn into pieces trying to split myself so many ways.

This morning our social worker called with some good news – our direct payments are being restarted to allow us agency care over the holidays.

It’s only 8 hours but it’s going to be a lifeline.

We are lucky to have a social worker who fights and fights hard for us.

We are also incredibly lucky to have supportive employers…

And the difference it makes to us is phenomenal.

It means we can carry on being parents AND feel useful.

Not everyone enjoys their job, I’m lucky that I do so for me it’s a form of respite.

And it is good for Sam to be able to get to know other people and learn that he can have fun without Mum and Dad there, just like any other child.

So, for now, it’s time for a coffee and a deep breath before the next battle starts.

Of the furry, canine variety.

Merlin, an 11 week old golden retriever, arrived from the service dog charity a week ago and is settling in well, however it really DOES feel like we’ve got a newborn baby all over again!

He needs house training, we’re up a couple of times in the night to let him out to pee, teaching what is acceptable behaviour and what isn’t, and how to play nicely (i.e. no nipping).

And it is overwhelming.

More than once I’ve asked myself if we’re doing the right thing bringing a puppy into our lives, especially as Sam can’t get out of the way of nips when Merlin is overly excited to see him and wants to play.

Hubster put it perfectly; we never had a, “normal”, baby, we’ve never had to deal with potty training or with the more usual behavioural issues which afflict toddlers and their parents.

It has come as an incredible shock.

It’s also raised a lot of feelings and thought which I didn’t really want to resurface.

I have ultimate respect for those who have more than one child – hats off to you guys.

For now, Merlin is starting his training to become a seizure alert dog/guide dog with basic socialisation and obedience training (he has a long was to go on that front), but over the next 12 months he’ll be trained to respond to Sam’s seizures and to alert us so we can keep our little boy safe.

In short, Merlin will be Sam’s constant guardian, companion and best friend.

For now, he’s a lovable ball of fluff fast asleep by my feet having just dunked his flurry noggin in his water bowl to cool down!

Like everything, in the special needs world, when things are going well it is fabulous, but things turn in a heartbeat.

We’re incredibly excited about Merlin’s potential, and about training him up as a service dog but at the same time like anything that worth doing, it’s very hard work.

Add that to the sheer exhaustion and frayed nerves that we all live with daily and it’s easy to lose sight of the here and now.

It’s also very easy to be bogged down with thoughts like, ‘If only he didn’t have these disabilities – we wouldn’t have to DO this!’

I am currently countering those thoughts with the mantra nothing that’s worth doing is going to be easy, and it’ll be worth it in the end.

Training Merlin will be difficult and I have no doubt there will be tears and doubts but it’ll be worth it to give Sam that loving companionship that only a dog can give.

In fact, he has already shown his worth on a recent trip out…

Last week, we attended Twycross Zoo’s Dream Night, an evening where the zoo opens its gates out of hours for disabled children and their families to enjoy.

After checking that it was OK to bring him, Merlin came along with us.

Towards the end of the evening Sam had a particularly nasty seizure which left him twitchy and miserable.

Merlin was exhausted after running round like a loony on his lead trying to fuss EVERYONE in sight so we scooped him up and plonked him on Sam’s lap in his wheelchair.

The change in Merlin’s manner was immediate – no longer the bouncy, overexcited puppy, he calmed down immediately and lay down gently on Sam’s lap, gently licking his young master’s hand.

Sam responded by resting his other hand against Merlin’s fur and we watched as our little boy visibly relaxed.

I’ve said it before and I’ll say it again – animals have an understanding and magic about that that humans simply lack.

Merlin stayed in that position for the remainder of the evening, every so often checking that his young friend was OK.

If this is a sign of things to come then we have most definitely made the right decision.

It was a particularly rough patch, Sam was battling hard against the seizures once again, he was having regular chest infections due to aspiration and I just desperately wanted to do something for him to make his life a bit happier and less of a struggle. Something that didn’t involve therapy, and that was just for HIM.

So on the advice of one of our nurses, I applied.

And they got back to me to say yes, he was indeed.

Mixed emotions – thrilled that they could do something really special for my little man but devastated that he really IS poorly enough to be considered by such a foundation.

In case you don’t know who Make a Wish are, they are one of the large wish granting charities, who aim to put a smile on the faces of seriously/terminally ill children by granting them a wish.

Many ask to meet their idols, others ask to be a princess for the day, and so on. Usually, the child fills in a pack with their likes, dislikes and what they’d like to wish for.

As Sam isn’t capable of doing so, we filled the wish pack in for him and then had a chat with a representative of the charity to see if we could identify something that he’d enjoy and that would be special for him.

One of Sam’s greatest loves is swimming – in the water and with his neck float he is free to move as he wants, without us holding him.

It’s his only real taste of independence and we encourage it as much as possible. The problem being that currently his seizures have been too bad for us to take him to our local pool.

The lady asked if we’d thought of asking for a hot tub for him, given his love of being in the water and the knowledge that his seizures make him ache all over.

We had, but didn’t think it was the sort of thing they could help with; apparently, they could… and they did!

Within weeks we were contacted to say that one hot tub would be on its way to us as soon as an installation date was arranged! That date was the last week of May.

Make a Wish organised *everything* from the supplying of the tub, to installation. Sam had his own ‘wish granter’, who was in charge of sorting everything out for him.

He let us know that the hot tub Sam would receive was a Marquis Wish tub, made especially for Make a Wish; the company donate a portion of their sales of this tub to the charity and provide this particular model to Wish Children.

On Wednesday morning two amazing men from a local spa and pool company arrived with the tub on a trailer…. braving our (very) narrow driveway….

In just 4 hours, they had leveled the patio where the tub was to go, installed the tub and put in its own power supply.

We had to wait a little longer before testing it out though as the water had to be treated first… and today everything was reading as it should, and we got our first go in the water.

We were slightly nervous about how Sam would be, as it was ridiculously windy this afternoon and a tad chilly, however we need not have worried – as soon as his toes hit the water the look on Sams face went from puzzlement (‘why are my parents bringing my outside in nothing more than a swim nappy?!’) to amazement, then contentment, then sleepy!

My lovely little man relaxed properly for the first time in weeks, as the warmth of the water (currently set to a fabulous 38C) allowed his muscles to soften and his neck float meant he was safe to be allowed to just float.

One very happy little chap.

Within moments he was snoozing contentedly, floating in the gentle flow of the jets.

Our experience with Make a Wish has been incredibly positive from start to finish.

While I still feel deep sadness that my little boy really does have a serious enough condition to warrant their support, it’s acts of incredibly kindness like this that make life brighter.

Having access to his own hot tub means we can allow him to benefit from the warmth of the water as often as he wants, or needs to.

They really have made my little boy’s wish come true.

The seizures themselves are bad enough, but the medications used to try and suppress them are every bit as bad.

In effect, we have to give our child medications to slow his brain, then the Professionals wonder why he struggles to learn/demonstrate what he knows.

Recently Sam’s seizures have been getting out of hand again – having been NG fed for the past 6 weeks he has gained considerable amounts of weight, which will inevitably knock his seizure control.

Things get really complicated when you know that the NG tube made his reflux infinitely worse, leading to chest infections and several very scary moments.

Last week Sam finally went in for his PEG insertion, the PEG is now in and healing nicely.

So, after weeks of frustration and keeping the neurologist informed, we’ve now got a plan to change his meds. And it is a scary one.

Sam’s neurologist has very set ideas on how he wants to proceed – he rarely shares this information with the parents, however in 4 years he has rarely made a wrong call over Sam and his care.

So, when he recommended removing one of the meds Sam has been on for many years in favour of increasing the dose of one we really aren’t keen on…. let’s just say it’s quite a leap of faith.

But I trust this man with my son’s life, literally, and he hasn’t let us down yet.

Two nights ago, we started the changes…. one medication reduced, another kept the same, and the third increased.

The problem is, although the aim is to keep a balance, the medication that was reduced has been crucial in helping Sam for most of his life – however, as the neuro said, it has some very serious side effects which are non-reversible.

If it had made Sam seizure-free he wouldn’t take him off it, however the pros no longer outweigh the cons.

The reduction left Sam vacant and groggy, as the increase in the third medication isn’t yet enough to counter the reduction in the first. It takes a lot of gritted teeth to battle through on days like that.

Seeing my usually happy little boy completely polaxed, non-interactive and STILL fitting is a tough call.

But today, we may be starting to see light at the end of that particular tunnel – Sam has been happy, laughing, chatty and full of life again 🙂 This is also not unusual with meds changes; my boy likes to throw everyone a curve ball and respond positively initially to changes, only to acclimatise to them within a few weeks.

Again, this is not uncommon in children with his type of epilepsy but is incredibly difficult as a parent to deal with.

So, for now, we’ll happily take this (possibly brief) break in the storm and make the most of this precious time with our little man, while he’s lucid and at his best – because you never know, this time it might be the real thing x

And this is one of those times when special needs parents differ to those of children without major health issues.

You see, a virus almost killed my child when he was just 12 months old (influenza  A).

For many children a cold is just a cold; irritating, unpleasant and leaves you feeling naff but isn’t actually life-threatening.

To many special needs kiddos, it really is.

In Sam’s case, a virus usually equals high temperature. Viral infections can rapidly lead onto nasty bacterial chest infections, because he struggles to clear the secretions from his chest that comes with a virus.  All of this means seizures go sky high.

So when I got home from work and his Nan looked worried every maternal instinct I have went into overdrive and immediately shot a look down at Sam sitting in his comfy p-pod (oh how much do I love that chair?!)… at what point did I learn how many breaths per minute was a normal value for a 3 year old?!

Within 30 seconds I’d determined that he was breathing more rapidly and more shallow than usual, he was working a little harder than usual to breath too (barely perceptible changes, but as a special needs mum you just KNOW).

Pale, glassy eyes, looked slightly sweaty and clammy.

I knew what the thermometer would say even before it beeped with the faster beep indicating a temperature of over 38C.

The inquisition began: Had he had calpol yet? Yes, he had. Seizures? Yes, two big clusters, around 4mins for the first, 9 for the second. Oxygen needed? Yes, both times.

Dammit. Every time Sam seems to get a break from the seizure activity, illness strikes and sends him reeling back into Seizure City.

Lots of seizures during the evening, the little dude just wanted to cuddle so took him up to bed with me early evening whereupon he snuggled into me while cuddling his beloved teddy, Mr. Scruffles.

Although his breathing overnight was pants, we got away lightly I think – only a couple more seizures overnight than usual.

And this morning he’s pouring with snot. POURING. As in, we-need-to-take-out-shares-in-kleenex type pouring. BUT for possibly the first time ever, he seems to be dealing with this one pretty well!

Big grins for me and Daddy (best therapy I could ever have that), even if he did insist on wiping his nose down my sleeve when I had a snuggle (I should learn not to wear dark tops); although he’s been quieter than usual, we haven’t (touches wood so so quickly here) ended up in hospital.  For Sam, this is a HUGE achievement.

To me it really emphasizes how incredible our kids are, whether special needs or typical – if I had that level of a cold I promise you I would be feeling very sorry for myself, yet despite all his additional issues this little man is refusing to succumb to the virus.

Only a couple of years ago this would have been a nightmare situation involving long hospital stays, oxygen, antibiotics to fight the inevitable secondary bacterial infections and a very, very poorly child.

When Sam was tiny and we practically lived in the hospital, my incredible Mum said to me that it wouldn’t always be this difficult.

That as he grew and got stronger he would be able to hold his own against the usual infections of childhood.  At the time, we couldn’t even think past that day, let along years into the future. We spent Sam’s entire first winter in hospital, his first birthday too. His second year, it was pretty similar.

Then his third year arrived, and we realised that we hadn’t had a stay on the ward in 4 months.

This winter has been a real pig for illness – the delightful Noro virus came to visit, snotty colds have done the rounds as have the usual run of chest infections/hospital visits BUT no actually hospital STAYS.

For the first time, we have managed to get through winter without being admitted  😀

Cue happy dance!

So, although Sam being poorly is utterly poo and rubbish, it’s really emphasized how far he’s come since the early days.

So, don’t lose hope – if you and your little people are suffering, hang onto the knowledge that they are stronger than you know, tougher than anyone else would believe and more inspiring than you ever imagined possible x

The seat can be moulded to fit the individual child if there are postural implications such as spinal curvature etc., or can be a standard fit.

While not a postural support device it has given Sam a comfortable place to rest and relax… due to his low tone, Sam is very delayed with his motor skills and is very floppy especially when tired; things like sitting on a sofa safely without full support just aren’t possible for him.

When he was dinky, we could sit him on our laps and support his body with our arms/strategically placed cushions… however he is now almost 1m tall and sitting on Mummies lap at least isn’t very comfy anymore!

Enter, the P-Pod. Sam *loves* his p-pod.

He can relax in the seat and go to sleep in there if he so wishes.  When he’s had a seizure and aches all over, we pop him gently into his p-pod and tilt it back so he can fall asleep if he needs to.

The waist straps are wide enough to be comfy but keep him safely in the seat so if he seizures whilst in there he’s safe.   And it’s light enough to move between rooms as needed.

For me the biggest plus is that it looks so awesome! The covers are lovely bright colours (Sam’s is bright blue), can be personalised, and are easy to remove for washing (unlike SOME of his equipment I might add).

It doesn’t scream ‘Special Needs’ at you like the oxygen cylinders, triton postural  support chair and standing frame all do… it just like an incredibly cool beanbag chair 😀 And we all love it completely.

However, getting the funding for one isn’t necessarily simple.

Sam’s former community Physio dislikes them with a passion as they don’t provide suitable postural support…  that is not what they are designed for.

Think of a dining chair – perfectly suited for supporting your posture whilst eating. Now imagine having to sit in that high/rigid back dining chair at ALL TIMES.

Hardly comfy or relaxing are they?!

I agree, Sam needs the firm postural support he gets from his other chair when he is eating, as it keeps him safe and allows him to eat safely… but just because he has additional issues, why should he not be allowed somewhere comfy to just chill out in?

As statutory services are only required to provide one piece of safe sitting equipment for him, they are under no obligation to provide another for the purposes of relaxation.

Fortunately, Sam’s OT agreed that it would be beneficial for him to have a p-pod and supported our application to a charity for help funding it (even though she did get in trouble about it and had to give us written instructions for use to appease PT 😉 ).

I honestly think it’s been one of the best piece of kit Sam has ever had – purely because it allows him to just be a little boy and watch cBeebies in comfort. Cx