When Sam was diagnosed, we thought we would find a medication to stop the seizures and our boy would be just fine.

Possibly have some learning issues due to the meds, but otherwise a normal, healthy little boy.

As things spiralled out of control and it became obvious this was not going to be the happy ending we had prayed for, we started to doubt ourselves.

I remember holding Sam in the middle of the night, just rocking him gently as he slept peacefully in my arms.

I had tears coursing down my face as I was so incredibly terrified that we might lose this precious little bundle before we’d even had the chance to see who he actually was.

There are still moments like that now, even though he’s rather bigger than he was(!), when I just hold him as he sleeps and marvel at how beautiful he is, and at how strong he has become.

Does this look like a sad photo to you?

Me neither.

At this time, Sam was fighting hard against around 100 seizures every single day.

Yes, it was heart-breaking to see, but was it always teary?

Nah. There was also a lot of silliness, giggling and as you can see here some award-winning smiles.

I wanted to write a simple post really, to tell all those Mums who have just been thrown bodily into the world of special needs – it really WILL be OK.

I can’t say what, ‘OK’, will be, but honestly, you’ll be fine.

You’ll be amazed at how much joy this life brings.

Right now, things are too raw and too overwhelming for you to see anything past the next few hours, days… so stop trying.

What you do NOW will change their tomorrow – and it’s not just therapy that’s crucial here.

Love, faith in them, and encouragement goes a very very long way too.

On paper, Sam’s diagnosis is dire; profound global developmental delay, visual impairment, motor skills of a baby a few months old.

Drug resistant epilepsy, life threatening seizures.

Four years ago if I’d known this would be our reality, I’m not sure I’d have been able to hang on; I wasn’t ready to accept it.

It sounds so utterly joyless, dark and a world full of grief at what might have been.

What I could never have known then is the joy that this remarkable child brings to my life, and the lives of everyone he knows.

He can’t yet crawl, but he can sit with very minimal support like a pro!

He recognises himself in a mirror and loves to interact and play – not bad for a child who is registered severely visually impaired!

We don’t see Sam as being profoundly disabled; we see him for who he is.

A cheeky, happy 4 year old who loves school, swimming, and going out for long walks in the surrounding countryside with Mummy, Daddy and his dog.

So, to the Mum of a child newly diagnosed; hang on.

You’ve been granted membership to a club no-one wants to join but now you’re here you’ll be welcomed with open arms and more love and support than you could ever have imagined existed.

Your child will amaze, inspire and astonish you with what they achieve; and you will be blessed with a child who will teach you far more than you will teach them.

You will become a fire breathing dragon when you need to in order to ensure that child gets what they need, and then as quickly become the proudest parent alive because your child has done something that the professionals believe would be impossible.

My Sam recently learned how to hold my hand – now he’ll just reach out and grab my arm simply because he wants me to be near him.

It is the most magical experience.

Be gentle to yourself, don’t expect to be suddenly OK with the knowledge that your child has more challenges than seems fair.

Wake up to sound of oxygen monitor at 3am.

Roll over to see fellow sleep-deprived parent roll out of bed, peer at monitor in the gloom, decide child is safe (he is snoring softly after all), crawl back into bed.

Places icy cold feet on my legs, illicit shriek… quickly rechecks child, all is still well (snoring).

Idiotic parents cannot contain giggling. Eventually stop giggling and attempt to get back to sleep.

Dog wakes, barks to go out.

Roll out of bed, stub toe on end of bed, grunt, open door to let dog out.

Dog flops onto floor, rolls onto back to present belly for tickles.

Really, Merlin? At 3.30??!

Realise that dog will not go out/settle until after tummy tickles.

Tickle dog’s tummy.

Dog pees on feet.

Dog unceremoniously directed outside for wee.

Dog refuses to come back in.

It’s freezing, think, “Suit yourself.”

Leave door open for dog to return.

Crawl back to bed (we live in a bungalow, so the door in question is our French window, within sight of our bed).

J up at 5.30, little dude still snoring softly.

Sam wakes at 6, seizure hits immediately.

Once recovered, nappy changed, meds given and breakfast sorted.

Kettle on for the all-important morning mug of tea.

Sam complains bitterly at being awake and being dressed.

While attempting to remove air from syringe, 25mls of bright purple (blueberry based) blended diet is fired half way across the room (over child, chair, floor, TV and up curtains).

Mutters obscenities, makes mental note to buy Vanish while wiping food off child/clothes/TV.

Sam deeply unimpressed with this.

Manoeuvre small person out of p-pod and into wheelchair… attempt to discover where, precisely, the straps have disappeared to this time.

Strap Sam into wheelchair, do battle to get hat on him as its sub-zero outside.

Hat lasts less than 2 minutes.

Put hat back on child.

Wait for taxi to arrive, wheel Sam out to meet taxi.

Realise that I am still in attractive Muppets PJ’s and slippers.

Once Sam is in taxi and off to school, hurtle round trying to find clothes while J feeds cats, dog and prepares to take dog out for walk.

Locate clothes.

Attempt to locate hairbrush.

Decide brushed hair overrated.

Scruff hair up with bit of wax to help make it look like designer bed-hair – not only-just-got-up bed-hair.

Fail.

Attempt to locate matching pair of shoes.

Arrive at work and cherish calming normality for the next few hours.

Get home to happy child who proceeds to tell me all about his day in his own way, cook tea, feed child, give meds, change nappies, deposit sleepy little person into his bed.

Listen to said child singing happily for next hour.

Wonder why I bother putting him to bed at a sensible time…

Collapse into bed exhausted, attempt to sleep while listening to the lovely, reassuring sounds of the little man breathing softly.

Get out of bed to check his SATs monitor is turned on, pause to gaze in wonder and absolute adoration at this wonderful, amazing little man who defies the odds daily.

Remember why it really is absolutely all worth it, chaos and exhaustion included.

I’m pretty sure however that I’m going to resent this equipment’s presence considerably for a little while.

Just like I did with the wheelchair before it, I used to want to cry every time I looked at the thing, but with time came acceptance… and now, I actually kind of like Sam’s wheelchair.

Its funky, with its lime green and black covers, and seeing how happy and comfy my boy is in it definitely helps with accepting it as part of life.

In fairness, I dreaded going home on the day the hoist arrived, I felt so incredibly sad at the knowledge it was there.

And yet, when I arrived at home, it was absolutely fine.

I’m actually pretty impressed with the hoist – it’s a lot smaller than I expected and, okay, its grey and industrial looking (nothing that a spot of glue and a few sparkly pompoms can’t rectify) but not actually as ugly as I’d built it up to be in my mind.

And then I saw Sam use it for the first time and I promise you, I have not laughed so hard in years!

Sam just hung there, chilling happily in his sling with a silly smile on his face…

He absolutely LOVES IT.

And, for me, that was the clincher – my boy is happy, therefore I am happy.

I do, however, think it needs to be rather prettier/less clinical looking….

Pass the pompoms someone…

No need to be amazed, it isn’t rocket science really, he’s just my son and I love him the same as any mother loves her child…

OK, so he has added extras, but he’s still just my cheeky, gorgeous little dude.

Neither Sam’s Dad nor I see ourselves as anything other than parents to a lovely little boy.

I suspect all special needs parents will identify with the sense of slight amusement as we are hailed somehow more inspirational, or stronger than mere mortals.

We didn’t choose this life but it was what was given to us, so we do what every parents does – we raise our children to the best of our ability.

I read something on Facebook this morning, about how you can either get bitter or you can get better.

I chose the latter option.

It was a conscious decision, I didn’t just suddenly wake up one morning and feel OK with the knowledge that my only child is profoundly disabled.

I made a choice.

When he was born I promised to love him no matter what.

To be his greatest champion, cheerleader and to be the best Mum I could possibly be.

None of that has changed just because he communicates with me in a different way to talking, or that he needs me to be his legs and carry him because he can’t yet walk.

Seeing how my tiny boy defiantly loves life and giggles in the face of his disabilities (and at farting… farting is extremely funny) just makes me love him even more than I ever imagined possible.

When Sam was 18 weeks old we were given a bleak prognosis for him; at that time we had no idea what was going on with our baby, all we knew was that he was critically ill.

I promised God at that moment that if he would just spare my boy we would deal with any disability, just let him stay with us. Please.

It’s a promise I intend to keep.

Our childrens’ birthdays can be hard but people tend to forget that OUR birthdays are equally as difficult sometimes.

Tomorrow I step slightly closer to a, ‘Significant Birthday’, (gonna leave you guessing).

And I am not overcome with joy at the prospect.

Ageing doesn’t bother me at all (think hair dye and anti-wrinkle cream).

What upsets me is that while we are all ageing, my precious little boy is almost like Peter Pan.

He has made significant leaps forward in his development in the past 12 months, but his motor skills are still virtually non-existent.

I find myself jealous of those mothers who have to repeatedly wipe their kiddo’s faces clean, and of the mothers shouting at their children to sit down/shut up/be quiet.

Actually, no. I’m not jealous of those parents…I’m heartbroken.

I want to give those parents a shake and tell them to revel in their child’s mischief and willful behaviour!

I want them to understand, deeply, that they are so so lucky that their child CAN run or talk the hind legs off a donkey.

I would give anything for my boy to have those same skills.

Tomorrow makes another year gone in my life and there are so many memories from that year, not all bad either!

But it has thrown into sharp focus how slow Sam’s development really is.

For the past 3 years he’s been SO close to crawling, but he hasn’t made any progress in this area at all.

He’s been ALMOST sitting independently, but again not moving forward on this one.

And that makes me ache deeply in my heart and soul.

It isn’t the same heart breaking, stabbing pain the seizures cause, that pain comes from fear and the feelings of being utterly powerless to do anything to help my boy.

It’s the much deeper ache of grief.

And it doesn’t ever go away.

We learn to live with it, like you would learn to go on living without a loved one who’s passed away, but it’s always there.

He HAS made leaps forward in his comprehension however…

Only on Friday his teacher was incredibly excited to tell us that Sam had been trying to blow a bubble off her finger in class; and that in the sensory room he had used his eyes brilliantly,

looking around at all the decorations still up in there from their Winter Wonderland theme…!

These are the moments we cherish, because what is only a tiny achievement to most is phenomenal for our little guy.

What I REALLY want for my birthday, you can’t buy in the shops or online.

It isn’t something that you can hold or feel.

All I want is for my little boy to have a happy, healthy life free of the accursed seizures that affect him daily.

If I can’t have that, tomorrow at least, then I’ll happily settle for a birthday cuddle off my favourite little person, and hopefully a chance to play with him after school (assuming he isn’t too tired).

After all, growing old is inevitable… growing up is optional.

Now things are different.

I still love all those things but now I prepare for winter like a military operation.

For Sam, winter is a dangerous time indeed.  As it is for many special needs children and adults.

This year so far since September, Sam has suffered a bout of tonsillitis, two chest infections (one resulting in hospitalisation as his seizures became so severe), chicken pox and has had a constant chesty cough and pouring nose.

The poor kid is utterly, totally fed up; he’s tired, run down and constantly poorly. And I don’t just mean he has a cold… a cold is never, ‘only’, a cold for children like him.

A cold = fever, increased seizures, high likelihood of progressing to pneumonia… which then means oxygen, rescue medication, ambulances, long stays in hospital.

Not to mention how much school he has to miss, and how much work we have to miss to take care of our little superstar.

We had literally just been discharged after our latest little visit to the NHS hotel; due to being generally poorly with his chest anyway, when Sam was taken back in due to a chest infection.

He then had swabs taken which showed group A strep bacteria (not actually a huge worry on the skin, but if it becomes an invasive infection it can be a killer) so, yet another course of antibiotics.

After 3 weeks off school, the little guy was thrilled to be back there this morning – I am currently praying that he manages a full week!

I’m also praying that I manage a full week at work – juggling things has become increasingly difficult this year and my level of absence this semester has become too much to maintain.

Once again the importance of a supportive line manager and employer has become evident – with my level of absence they would be fully within their rights to point out that I cannot continue to do my job (as I basically have been off more than in).

Instead of this however; they are trying extremely hard to find ways to manage my work so I can work flexibly, and to ensure that when the inevitable crises hit my work load doesn’t have to be covered by other, already very stretched, staff members.

I can’t even begin to tell you how difficult it is to juggle everything, but knowing that my employer isn’t about to just give up on me means a lot.

So.. fingers crossed the little man manages a full week back at school.

Meds are being changed and they are making my little boy suffer once again.

Drug increases are just as difficult to adjust to as drug weaning.

Seizures at night mean that none of us are getting the sleep we need.

Sam manages brilliantly, mostly by sleeping on the way to and from school, and by flaking out once he gets home!

Mummy and Daddy, however, don’t have that option.

And this week is a big one for appointments – seriously, WHY do they all come at once?

Do the appointments people do it to us on purpose?!

The big one is on Wednesday with Sams Neurologist.  And I am going to need to have my game face firmly in place as it is not going to be an easy one to get through.

The thing is, when our children’s consultants see them it is usually for 20 minutes every 6 months; through no fault of their own they don’t have the chance to really dig deep into what it’s like on a daily basis for their patients and their families.

Sam’s Neurologist has been with us since Sam was 18 weeks old, he’s pretty much family, and I love him and want to throttle him in equal measure!

He is also human, he doesn’t have a crystal ball and isn’t able to pick a particular drug off the shelf and say, ‘This is the one that will stop the seizures’.

Sadly it is a balancing/juggling act and it is utterly demoralising as we try a new combination of medications and have to report, again, that the seizures are continuing.

I have only ever cried once in a neurology appointment, and that was the day he had to show me my boys MRI scan… and he had to fight back his emotions too.

This week may well be the second time I cry in an appointment with him – it’s just such a hellish experience watching my little man go through so much, and being utterly helpless to do anything about it.

Currently, the medications he is on are holding back the massive seizures that stop him breathing, but are making his other seizure type far worse.

We could try a new drug, but that brings so much uncertainty with it over whether it will help at all, or make things worse, or bring with it awful side effects.

But the main reason for this appointment is to discuss surgery.

More specifically, why no progress has been made with referring him for evaluation.

No parent ever wants to discuss this sort of thing, we are in effect asking them to see if our son is a candidate to have his brain cut in two in a bid to stop the seizures.

I feel sick just thinking about it, but then there’s a tiny spark of hope that the surgery might help him more than anything else.

Until he is evaluated we don’t know if it’s even an option, and now this special needs mum has to put her foot down firmly.

I suspect all parents feel as anxious as I do before an appointment – please tell me it isn’t just me?!

I dread it.

But it’s the way we make headway and help our children… fortunately, we have medical professionals who are prepared to work WITH rather than AGAINST us, but it is still a difficult path to walk.

Every nappy change, wake up, seizure and activity detailed in nauseating detail.

And it really, really HURTS. Why?

Simples.

Because it forces me to record all the events that make our lives so different to what we had expected.

It means I have no choice but to acknowledge just how many of the vile seizures my little man suffers on a daily basis.

And that really hurts my heart. It breaks me, if I’m honest.

He is such a lovely, happy little boy but when you have to examine every smile and every laugh to ask whether its joy or seizure activity…. lets just say it sucks the very life out of you.

It’s a truly hideous experience, however it is a necessary evil, a means to an end.

It will hopefully drive it home to the people who make the decisions over whether or not we get the care and support we so desperately need that we do, DESPERATELY, need it.

The agreement is there in principle, however now we have to show just what life is like on a daily basis, and if I’m honest a lot of the time while we don’t ignore Sams seizures or how much we have to do, there is a certain level of acceptance that this is just how life is.

Its no better or worse than anyone else’s. It’s just different.

For me, the seizures just fade into the background of our lives.

One upon a time they had a terrible power over me; they would leave me terrified to let my child out of my sight, too afraid to fall asleep in case one hit in the night and I missed it, and the fear of one hitting while we were out and about meant that I was in danger of becoming a prisoner in my own home along with my precious boy.

Over the past 4 years we have learnt that life is for living, and that while SUDEP (sudden unexplained death in epilepsy patients) is a very real and very frightening thing indeed, it is also not a common occurrence.

That doesn’t help if it happens to be you it happens to – just like with Sam’s condition statistics means bog all when you’re the 1 in x many 1000 affected.

Our defense is to live and to cram as much joy into every day that we can; and to ensure that Sam is treated like any other 4 yr old little boy as much as possible.

We try not to wrap him in cotton wool, for example, sending him off to school in a taxi with an escort.

But today, having to note down each and every twitch, every seizure, and so on…. today there is a small chink in my armour and I’m feeling very vulnerable.

There is but one attempt at a cure for this situation and I intend to make use of it.

I am off to bed, to cuddle my favourite little man in our bed while his Dad, bless him, sorts out the laundry and makes sure all our animals are fed, safe and in their respective beds.

Three days of the diary done, only two more to go.

It’s not *quite* how we imagined it would be, all those years ago, when you were still waiting to be born… we didn’t imagine you sitting in a lime green, fancy-pants wheelchair for example.

Or that instead of me driving you in, you’d be taken in by a wonderful family-run taxi firm, in their adapted taxi.

And I’ll be honest, that reality is cutting me in two right now but seeing you ready to go off on your next adventure I am also so, so proud of you.  Of the wonderful, loving, gentle child you’ve become.

Sweetheart, you are going to have so much fun at school!

You’ve already met your new teachers, as you had a brief few weeks there before the summer holidays, and I know that they adore you almost as much as we do.

I know you’ll be safe there, and happy.

But my darling, I am going to miss you so very much… while you’re having fun painting, swimming and out exploring with your new friends in the school garden, I’ll be sitting at work wondering how you’re getting on, and counting down the hours until I can leave and come home to see you.

Your Daddy and I don’t see your disabilities, we see you.

And so do your new teachers and friends.

And while I cannot promise that I won’t cry when you leave for school (although I’ll be careful not to let you see) I can promise that when you get home we’ll be there waiting for you.

Things may not be how we imagined or expected, but they are none the worse for that.

On the contrary, we are better people for it, and that my love, is all thanks to you. x