I sit with him most days trying to get a smile, a smirk or even a little kiss.

He’s a far cry from the affectionate little boy he once was.

There was a time not too long ago that he would climb all over me slobbering his ever-wet lips onto my face, eyes, ears and even my head.

He loved to be loved.

These days are different.

These days are darker.

He’s there for moments at a time.

Back in 2008, I believed that the doctors could have been wrong. They may have had the syndrome right but there was no way my little hyper, energy filled, affectionate boy could ever lose the ability to walk, eat, talk or understand.

Sadly, they were right.

I think back to that day and how I believed that it was the worst day of our lives but now, these days, I don’t see that day as the worst, it was simply just the start.

The five year and ten-month battle to find out what was different about my little boy had come to an end that day.

Answers were given.

Answers which fuelled more questions.

Answers we could never have predicted to come our way on that wet day in March.

Yes, we were given answers but we were left with more questions than a wide-eyed toddler learning about the world.

Diagnosis Day for us now, is something like an anniversary.

Every March we recall the same story only lately, over these past few ‘Marches’ we recall Ethan. We recall the little boy pretending to be a plane, oblivious to the heartbreak now surrounding him. We recall him climbing onto my lap and telling me “It will be okay mammy”.

We recall him asking for ‘Supermacs’ because he was a good boy at the hospital. We laugh when we recall him telling his uncle to ‘relax’ as my brother wanted to cuddle and hold him tight upon hearing the news.

We no longer just focus on the heartbreak when the doctor used the words “Go home and love him, for you won’t have him for long”

The heartbreak from that day, and those words has shifted, allowing us to recall more parts of that day, a day when Ethan was still very much Ethan.

As odd, as it may sound, I’m thankful to be able to recall the day outside of the doctor’s dusty brown office.

We’ve a different kind of heartbreak and one that no one really wants to talk about.

We now have the heartbreak of remembering the same child and what he was like back in 2008, 2009, 2010…

We have been grieving him.

Grieving him even though he is here.

His body refuses to let him run wild like he used to.

His mind insists on taking all his words and memories away.

His mouth won’t allow him to eat his favourite foods and his hands no longer can make the jigsaws he once loved.

I’ll be honest; I used to dwell on our Diagnosis story.

I let it define how our world was ripped wide open and our hearts were left without protection and to a certain degree that’s still how I feel but…

Time changes your perspective.

A progressive illness changes your perspective, almost daily.

Our world has changed and been modified more times than you’ve had a hangover.

We’ve stepped into every corner of ‘Special needs.

We know what it’s like to have a child who just won’t sit still or says the most inappropriate things ever.

We are the parents of that child in school that has no friends or hits everyone he meets.

We are the same parents considering a hoist and track.

We now know all about peg feeding, bum changing, special Beds… Special fecking everything.

If I could go back to our diagnosis day, I would have looked after me too.

I would have asked for help in processing such news.

I wouldn’t have said “I’m fine”

I don’t think I could have changed the tears that were shed and still fall but I would have been more open about how ‘we’ were doing.

I would have not been focused on future Ethan. I would have tried to control my thoughts that bit better and stayed in the present with Ethan.

Hindsight is indeed a great perspective maker too.

That brings me to the present.

As I type this Ethan is screaming. (Our home help H, is trying her best to engage with him)

Ethan screams almost daily now. We are still asking questions but answers are not so forth coming.

What ‘they’ do think, is that he screams because he can or as a way to communicate pain, hunger, happiness, dirty nappy…

I use mindfulness to keep me here, in the present.

Being here, no matter how hard or sad, is important.

I want to be present for Ethan even if he is struggling.

I want to remember it all.

I want to recall the good, bad, sad, hard …isn’t that a life?

I want to remember Ethan’s life, struggles and all.

Yes, we grieve a child who still is with us and I suppose that for me, is far worse than our diagnosis day.

My advice for your own diagnosis day, try not to forget there are many days after, mind you too.

What is a hospice?

Is it a place where sadness hides in every corner?

Is it a place that no one dares to speak of? Is it a place that means our children’s lives are coming to an end?

Is it a place that’s clinical, like a hospital, so to speak?

Is it a place where laughter is foreign and happiness cannot be found?

Is it a place where whispers are heard through a string of tears?

Is it a place that forces a happy face to hide the real heartbreak?

Is it a place with busy nurses and doctors, oh and tons of specialists too?

Is it a place with ambulance bays where medics rush in and out of the place?

It may seem like a hospice is a place where sadness lives among pain, with no room for joy, laughter or fun.

While there can be a sadness there (who would want to have to avail of a hospice service for anyone they love, especially their child), there’s so much more …

A hospice, I assure you, is much more than the place you may perceive it to be.

It is a place filled with warmth.

There is hug waiting for you, should you need a soft embrace.

There’s a listening ear, an understanding nod and a hot cup of coffee; all free of charge.

There’s colour in every corner, with smiling portraits hanging on the walls.

There are doctors and nurses dressed in anything but white; there are no doctors lab coats to give our little ones a fright.

An ambulance is a special taxi, ordered to delivery our special ones home after a stay.

Extended family can visit; there’s plenty of tea and a tour of the hospice to quieten their fears.

There’s time given to each family there; be it a shopping spree in Dundrum, a listening ear or just to hang out in the family quarters, upstairs.

Music and laughter fill the air as a clown may pop up from anywhere.

Now, it’s worth mentioning that a lot of what goes on inside a hospice –

Is done by volunteers with hearts bigger than most and hands ready to help without a fuss.

The entertainment is next to none; from family days to Superheroes week and every week in between, there’s always something going on with the team.

It’s a place where time stands still for families like mine; we get to just be and perhaps that’s the greatest bit of all.

A hospice is not scary, sad or something to be feared-it’s simply a safe place to make memories and talk through obvious fears.

I get to enjoy Ethan, laugh and play with him and when it’s time to do his medications or his self-care; I can go off and bring my other boys out to play.

There’s someone there for Ethan while we spend some time with our other boys.

But if our boys should need support there’s always an outstretched hand or a listening ear.

It’s respite, a break, a mini holiday given to families like mine to ensure we self-care.

It’s a place that leaves you in awe of the wonderful staff, volunteers, cleaners and the talented chefs.

What is a hospice, you may have wondered?

It’s a place full of laughter, support, friendships and perhaps some tears, all different types of tears; happy, sad, overwhelming, full of pride and pure love and appreciate for the kindness shown to not only us but our wonderful son, Ethan.

So, thank you Lauralynn Children’s hospice for opening your doors to us and giving us time to just be a regular family.

It’s that time of year again where we get to take some time out of routine.

Gone are the rushed early mornings, the, ‘oh no I forgot to get sandwich fillers for lunches’, and the panic over the school phone number flashing up on your phone..

Oh yes, it is Summer.

Summer is supposed to be a time for us all to relax, a time for being together, a time for fun, a time for adventure, camps, camping, water parks and everything in between…

Well, that’s what society, Instagram, Pinterest and bloggers tell us anyway.

But for my family and me, Summer is without a doubt the worst of the school holidays; at least with Christmas they get new stuff to keep them semi entertained and quiet, the nasty weather helps ease that mammy guilt of, ‘not doing enough with the kids’, feeling.

We, ‘should’, ourselves way, way too much.

We see the pictures of all the holiday going families and we think we ‘should’ be doing that or at least trying to.

We see the ‘perfect’ family all playing nicely together out the back garden and we ‘should’ ourselves, we should be doing that too without the fighting, crying, arguing…

We, ‘should’, ourselves way, way too much.

I gave up, ‘should-ing’ ,myself recently and I highly, highly recommend it.

When I feel a should creeping into my thoughts, I tell it to leave.

It is liberating.

I am doing my best.

We don’t go on many days out as a family of five, but when we do, we ensure it’s suitable for all our family, not just a typical family.

There are days when it’s just the four of us as Ethan is in respite, even then we scope places out for accessibility, wondering if we could bring Ethan next time.

We spend most of the Summer at home.

I let them run wild.

I let them away with not eating dinner.

I let them fight and shout while I pretend I can’t hear them, I will only intervene if there’s a blood curdling scream, you know, that scream?!

I give them ice cream after ice cream.

I buy water guns and let them go ‘mad’.

At the weekends we try to get out as a family of five, sometimes we argue all the way there and back and other times we sing crazy songs in the car.

Sometimes the best part of the trip is the car ride …

I hide in the bathroom, praying for the day to speed up.

I try to convince them that 10am is a perfect time to watch a family movie.

I make milkshakes, just to get rid of the almost but not quite rotting fruit.

We play catch the flies, which, by the way, burns a lot of their energy.

If they are bored, I give them jobs.

If they complain, I take away toys, mobile phones and ice creams.

When I feel guilty for not doing enough with them, I play a game of superheroes, Lego, burping, wrestling or we draw and colour.

I have bought more outdoor toys than I care to recall just so they feel like they are out all day, even if it’s only the back garden or local park.

I am doing my best and that OK with me.

There won’t ever be a family holiday for us five, those days have gone and that’s something which is hard to admit.

We don’t go too far on our days out because we can’t, but we do our best to ensure that there are days out.

I wrote a blog at the end of Summer last year about all the places we visited over the Summer, (which was originally planned just for me to keep track of the places which suited Ethan).

I published it when someone asked me about a picture of Ethan I had shared.

Families like mine were so delighted to finally read an inclusive list of places, telling them what to expect when visiting.

I was honest and open in every review and told each place we visited that I would write about them.

Some were delighted. Some were a tad anxious, but I assured them that I was merely looking for places where a wheelchair wasn’t an issue and a place to change my son, if needs be.

Sadly, not one of these places had a, ‘Place to Change’, bathroom however, most did have a disabled toilet.

I was sick of reading about family friendly places to visit which in my eyes were family friendly places to visit when you have a typical family.

I got sick of clicking a link and seeing it wasn’t suitable at all for my family.

“Someone should do a list which is actually family friendly regardless of ability” I moaned out loud.

“You’d be ideal. Maybe you should be the one to do that” my husband suggested.

That’s the moment I learned the difference between good should-ing and bad should-ing…

While the bad should-ing does enter my mind, I try to focus on the good should-ing…

I should play with my kids while they still want me to,

I should spend time doing nothing with them,

I should spend time planning a great day out for us all,

I should relax out the back garden and let them draw around my body like they’ve discovered a dead person, (it’s not a bad game, I have to lay still, it’s actually very relaxing!)

I should ignore the picture-perfect family splashed all over Facebook,

I should delete Pinterest too….

I am sure you get the idea, I hope you all enjoy your Summer as best you can with the life you have….

All any of us really should do is make the most out of what we have right here and right now.

Happy Summer… which is over in six weeks, but who’s counting?!

Since entering the world of special needs there are many life lessons I have learned; below are just a few.

– Judging others comes too easily to us all; trying not to judge – now that’s hard.

– All may not be what it seems.

– Sometimes the worst-case scenario; brings hidden joy.

– Appreciation for laughter is so, so often undervalued.

– Life isn’t about what you have or what you don’t have.

– Celebrity’s lives are not important to your life.

– Facing the known can be just as scary as facing the unknown.

– Friends come, friends go.

– Plans change; having a fluid plan works best.

– Usually if I smell it; it’s exactly what I think it is.

– Doctors are people too; they can be questioned.

– Raw sausages, playdough, crayons…all come out the other end, no issue.

– It’s okay not to answer the phone; if it’s vital, they’ll ring back.

– Life is truly what you make of it.

– Strength can be born from fear.

– Motherhood and parenthood is different for every single person; be kind.

– There’s time and then there’s quality time; we must make more time for the latter.

– Finding the funny comes back once you learn to be honest with the life you have …this is an ongoing process.

– Motherhood and parenthood can be stressful; spend the time looking for your kin – they can be tricky to find.

– Somethings we can’t change with positive thoughts or by lighting candles; some things are awful …it is fine to say it.

– Try not to dwell too much; it can cause huge wrinkles …

– Being sad is just as acceptable as being happy …

– Everyone loses their minds temporarily …just be sure to find it again and if you can’t – ask for help.

– Pushing a wheelchair is hard, back breaking work…hold the doors and move out of the way!!

– Most disabled toilets are not actually designed for people with physical disabilities.

– Mindfulness is not a hippy dippy notion; it’s more like an awakening of the soul, mind and body but you must allow it to do that for you.

– Being in the moment is hard work; keep trying, you’ll get there and it will be worth it.

– Your kid is special. I don’t care if you don’t like the term – my kid is special; I’ve never met another almost 16-year-old who has taught an adult so much. That to me is so SO special.

– Dancing to Mickey Mouse Clubhouse can be the highlight of your day; that’s pretty cool; there are many parents out there who would give their life for a moment like that.

– You are allowed to be angry; just remember to aim that anger at the right things and dump it there.

– Holidaying away from your kids is vital, a day or seven …doesn’t matter, just do it at least once a year.

– Respite services do not get enough praise.

– Nurses are often overlooked by doctors but those guys know an awful, awful lot.

– Trust is something you may have to give to a lot of different people; that doesn’t mean that you can’t ask questions.

– If something doesn’t feel right; listen to your gut – that baby is rarely wrong.

– A clean house is actually impossible.

– Whiskey tastes better the older I get, not the other way around.

– Say what you mean and mean what you say especially when fighting for your child’s needs; if you make a threat, follow through – I promise, you’ll only have to do it the once – they will write a little note about you and you won’t be mucked around again when it comes to your child.

– No one becomes an advocate without having a child like mine or yours. We don’t even realise that’s what we are doing; advocating, until someone else points it out.

– Family are there when you need them; even though they have their own stuff going on.

– Everyone has stuff. Those who pause their stuff for your stuff, are the real deal; keep them close, treasure those people.

– Netflix is absolutely the best thing to keep the kids entertained while you catch forty winks on the chair.

– Sleep is a privilege; as is hot coffee.

– A feeding tube isn’t as scary as you think.

– Kindness is a strength, never a weakness.

– We should all fight for what we believe in unless it’s unicorns because they aren’t real.

– Life changes; adapt as best you can.

– Memories are indeed treasures.

– Life is for living; don’t get bogged down by details.

– Remember your friends; they miss you, reach out.

– Happiness is whatever puts a smile on your face; your kids playing, your child singing, your kids finally asleep.

– Parenthood isn’t a competition; we are all doing the best we can and we all feed them junk food rather than cook, we all lose our sh1t at them and we all, all feel that blasted guilt…

– Don’t let parent guilt win.

– Inner peace can come once the kids are in bed; no, I’m kidding, inner peace can come when we allow it to.

– Never wear heels when you know your child is a runner; so what if it’s your wedding day?!

– Bring your child out. Let them be loud. Stand and be proud.

– You. Can. Do. This.

– Remember to smile …it suits you x

I smiled, unsure of what I had signed up for.

She asked had I ever done this before, to which I replied once but not as intensive as this course had promised to be.

Over the years I have tried a few things to help myself cope with the stress and anxiety which I have.

People tell me “Don’t forget to make time for you too”; and that is probably the hardest part of my life. Making time for me. Just me.

I wanted to be able to make time for myself and to mind myself but every single time I tried, floods of guilt would open up and ravish through my mind then my body – are the kids being looked after? Did I spend enough of my respite time with them too? Am I selfish?

With the guilt came mind-wondering.

I don’t know about you folks but when I am alone and having time for myself my mind starts reminding me of everything I should have done before I left the house or it reminds me of all the things I have to do after I have had time for myself.

These thoughts can go on and on until they become quite mean Oh you are such a selfish mother! Are you even a real mother if you’ve time to be sitting doing nothing? Oh really, how lazy were you that you didn’t put on that wash before you left, you should have…. Did you even think about Ethan and that tickle cough he has today?

I got tired of this behaviour towards myself. I wondered was there a way in which I could be kinder to me. Yes me. And if there was a way I could have ‘me time’ without all of my usual guilt.

This is what lead me to her.

We sat.  She shared a little about herself with me then asked what I believed “mindfulness” was all about.

The truth was I didn’t really know. I thought it was “hippy dippy” stuff but worth trying all the same.

Eight weeks later with one and a half hour sessions each week; I can tell you what “mindfulness” means to me.

It for me was about calming my mind. Learning how to be in the moment, really be in it by taking a step back and noticing all the wonderful things we are often far too busy to acknowledge or worse, we take for granted. Even a cold drink on a hot day.

I learned how to let my mind go into those awful thoughts I have about Ethan and our life without him; and how to be with such horrible feelings yet I was able to accept them but let them go.

I learned to understand that inner voice which says nasty things to me; I now know that those are fleeting thoughts that carry no weight unless I allow them to.

Why do we speak so unkindly to ourselves?

We would never say even a quarter of what we say to ourselves to the ones we love, or even to strangers.

Why do we allow those thoughts to burrow into our minds?

When we are told to look after ourselves and reminded that if we don’t mind ourselves we can’t care for our children, I don’t think people realise that a spa treatment isn’t the solution; while that’s always welcome.

I think we all need to be saying things like – look after your mind too, your mental health. It doesn’t matter which way you chose to look after your mental health, find something that works for you and stick with it.

It is worth it.

I myself, see a counselor, practice mindfulness and up until a few months ago I was taking medication – my panic attacks were so severe that I believed I was dying.

Today however, I understand that while I will always have stress and anxiety in my life, that they can be managed through mindfulness exercises, by talking and for me personally writing.

There are no cure for mental health issues but there is help.

There are ways to learn to live with mental health issues. We don’t need to be clinging on to the cliffs edge saying “we are coping” while hoping our grip doesn’t loosen.

It’s 2018; there’s nothing wrong with saying, “My mental health wasn’t too good there for a while but I am trying to be in control again,” or, “I am not coping – I need help.”

If there is one thing I would like you, the reader to take away from this, it’s this: Life is beautiful, hard, sad and brilliant – we all take hits but remember we each have a bat too – hit back, smile and do indeed dance in the rain.

On this International Day of Families I wanted to share with you all a little bit about my family.

May 15th.

This is three days before my eldest son turns 16 and it will be two days after his big super 16th birthday celebration.

May 15th.

This is also the day allocated to kiddies like my eldest son, it is MPS/ ML Awareness Day.

It’s a day where I am encouraged to tell you all about MPS /ML…

My son, Ethan has MPS type 2 – Hunter Syndrome.

I can tell you all about my darling son; he is a living hero.

He has had more hospital visits, operations and week-long stays than any person I personally know.
He still smiles at the nurses – not so much the doctor’s.
He’s beautiful.
He’s innocent.
He’s pure of heart.
He’s funny.
He’s charming.
He’s full of empathy.
He’s full of devilment.
He’s loud.
He’s a whirlwind.
He’s not able to sit in one place for long.
He’s curious.
He’s nosy.
He’s noisy.
He’s quick to anger but just as quick to laugh.

He’s friendly.
He’s artistic.
He’s a Simpson addict, well he’s a cartoon addict, if I’m honest.
He’s cute; he knows how to make anyone forgive him anything.
He’s a whizz at jigsaws.
He’s the fastest thing on two legs if he thinks you’re chasing him…

Yes; that is my boy Ethan.

Let me now tell you about Hunter Syndrome.
It’s taken Ethan’s ability to run, to play, to draw, to speak, to eat, to walk, to use the toilet unaided, to understand.

Hunter Syndrome is taking everything from my son and leaving a shell of the boy he once was.

I am watching my child disappear right before my eyes.

Every May 15th, for as long as my son has been diagnosed, I have tried to raise awareness.

I’ve talked and written about the signs and symptoms regarding Hunter Syndrome.

I’ve discussed the rarity of the syndrome.

I’ve discussed what it does to my son and other boys like him.

This year I decided to be blunt.

This is about as blunt as I can be.

I think people expect a ray of hope at the end of pieces like this but there isn’t one here, for our family nor for Ethan.

There is no magical cure.

My son could live for another five years or for another five months.

But with each passing month ,the change in him is more complex, more dangerous and takes more of him away from us.

He’s almost 16.

That’s old.

I live in a world where almost 16, is a ‘good age ‘, how messed up is that?

But I have to accept it. I don’t have a choice. I can and do often wish things were different but if I spend my time doing that, I’ll miss the laughs Ethan shares with us.

Hunters takes so much from our family that it forces us to spend time hating it.

What a waste of energy, eh?

Hating something that has ravished your child’s mind and body yet it is so much a part of him.

It’s an emotional rollercoaster.

There are no, “how to” books.

I know without Hunter Syndrome, Ethan would not be Ethan; that’s the struggle I personally have, how can I hate Hunter Syndrome?

There’s a cure around the corner, but my son will never benefit from it.

I don’t know how to feel about that.

A cure.

A real cure .

But my son can’t and won’t have it as the syndrome has already ravished so much that he sometimes forgets who I am.

My son , almost 16 still laughs, still plays and still watches the Simpsons.

This May 15th I will once again try to raise awareness for him and others like him, I will also do my best to help fund the cure but I won’t follow the results too closely as it’s too hard to watch for me and my family.

May 15th is International Day of Families; take a few minutes to think of families like mine who can’t even take the whole family out without planning and replanning due to accessibility (but that’s another post for another day.)

Please learn about Hunter Syndrome as it can occur in any family ,in any part of the world. Wear purple or blue for MPS Awareness Day this May 15th.

Thank you for reading.