You began, like most of my years since I became a parent, with an early start and a clear head.

You brought me some form of hope; but I was also frightened of you because you reminded me that time moves forward.

Having a child with a progressive terminal illness; I never look forward to a new year, but I do try to enter it with hope, because really that’s all any of us have.

You started well enough 2016, for that, I thank you.

By mid March, however, I could see that Ethan’s medications were not doing what they were supposed to be doing — keeping him calm, happy and free from fits of rage.

2016, you gave us our fourteenth year with Ethan, I am supposed to be grateful for that, but 2016, I want all the other years to give me that much too, at the very least.

You did bring us some right old belly laughs – like in the Summer when Ethan roared ‘fug way’ (more commonly known as fu*k off) to a bunch of people staring at him; this was behaviour we hadn’t seen since 2015, so 2016, thank you for that – we really did laugh.

You, 2016, taught us never to book a holiday with a booking agency ever again – we lost all our holiday money on a trip away because the company went bust – you may remember that ‘low cost holiday’ debacle (if not here’s what happened to us) oh well, eh?

It could have been worse and 2016, I really feel you thought that saying was a challenge.

You showed us how little money actually means; that losing money, really wasn’t that bad.

I guess I should thank you for that perspective, eh?

Your idea of Summer was on one hand great fun, where we went out and about like any other family.

Ethan was in great form and he was happy.

But, you brought a cloud when we were told Ethan’s swallow was deteriorating and that he could no longer have the one thing in this world he ‘bloves’ – ice cream.

We handled it like pros though ; we accepted it and began adding more ‘thickener’ to Ethan’s drinks and thanked the powers that be, that Ethan was still able to eat by mouth.

You taught us to look for that sliver of sunshine and to grab it and focus on it.

We did that and I have to say we did it rather well.

We didn’t stop to think of a ‘decline’ in Ethan’s abilities, instead we focused on his current abilities.

You 2016, also introduced us to the need for a wheelchair; again we decided the silver lining in this was that now Ethan could enjoy family days out in comfort.

We knew Hunter syndrome was taking more away from Ethan; but he was still happy and as naive as that sounds, that is what we clung on to.

By Winter 2016, you decided you’d teach us some more lessons regardless of what we had already learned over the previous 10 months.

You taught us that life, no matter how much you think you can prepare for; sometimes just goes so haywire that by the time you get your head and heart back into some form of working order, you don’t recognise the little boy from the Summer.

You taught us that progressive illness isn’t something that we can hide away from; that it isn’t something that only happens way way way in the future, you taught us that it’s here and it isn’t going to get better.

2016 you took some amazing people from this planet during your reign – no not celebrities – children, little children who lived every day fighting for their next; while their parents had no choice but to stand by and watch – because there aren’t enough funds to research into a rare disease such as hunter syndrome, to help find a cure.

You 2016, have been a roller coaster year – you have shown us how bloody amazing people are, how much they care about our little boy but you’ve also shown us the heartbreaking reality of hunter syndrome.

You ended with an appointment for a tube to be fitted into Ethan’s tummy; but you also made us aware that this is something like a wheelchair, our boy needs it and it is an aid to help him – you’ve taken the worry of his weight off my shoulders.

You 2016, made me wonder if this was my son’s last Christmas and I find that unforgivable – I am relieved you are over.

I did heed your lessons and I still entered 2017 with a clear head (obviously – three kids ensures that!) but also with hope.

2017 you have started better than I had anticipated, Ethan has smiled a few times and even laughed  – thanks to one Homer J Simpson!

2017, if you are reading this, families like ours need you to be more decent to us, we go through enough emotional sh*t that seeing our children smile and be happy is all we really want – cut us all some slack, eh?

Thank you,

From Ethan’s mammy

You may find them locally, you may already know them.

I remember desperately searching the Internet for my, ‘kin’.

I felt I needed to speak to other mothers who were given the same diagnosis, I wanted them to answer my questions.

I believed they were the only ones who could truly understand me and give me some sort of glimpse into my future… Ethan’s future.

I eventually found a few members of my, ‘kin’, scattered all over the world.

Some were new to the diagnosis as was I, others were further along the diagnosis and many had lived through it all – they were still standing and offering support and advice to anyone who needed it.

Back in 2008, when Ethan was diagnosed, there was little information about Hunter Syndrome, there was less information about families living with it and even less information about where to get support.

I found an online forum, where I connected to some wonderful families.

Each of them answered my often blunt questions and each of them explained that there were many different severities with the syndrome.

They gave me hope… they gave me lists of specialists… they gave me suggestions for therapies… they were and still are invaluable to me.

The most important thing they gave me was indeed honesty.

They never lied- I appreciated that. I needed that.

Rose-tinted glasses are not something that should be offered to parents raising a terminally ill child.

We need honesty, with lots of, ‘You’re not alone’.

In the early years of diagnosis I needed this, ‘kin’. 

I needed those who knew exactly what I was facing, to hear me and to help me; which they did and have done for 8 years now.

Many of these ‘kin’ are now my family, I love them and their children dearly. I am forever grateful for them.

As the years rolled by, I learned that I could keep these, ‘kin’, but also find new, ‘kin’, and those new, ‘kin’, were very easy to find – they were everywhere!

Walking down the road, I often see my, ‘kin’.

She pushes the buggy, while her toddler roars for her to carry her, the baby begins to cry. She is tired. She smiles as she passes me – she is my kin.

She sits beside me in the waiting room. Her child is sitting in his chair flapping his arms and shouting. I ask his name. Her shoulders drop and we talk – she is my kin.

She struggles to breastfeed her baby who is starting to scream, she feels people are staring – she is my kin.

She lays awake thinking about all the things she should have done today, all the times she lost her patience, all the appointments she has to keep, worry lines decorate her forehead – she is my kin.

She laughs at the new thing her child has learned and wants to tell everyone who will listen! She wants to brag about her child, she wants you to see what she sees – she is my kin.

She beams as her child cycles for the first time; the age of the child is irrelevant. The fact that she has helped her child learn a new skill is filling her with pride – she is my kin.

She smiles as her child stumbles towards mine. She helps with their words. She has spent years in therapy and now her child can say their name and walk – she is my kin.

She is tired of the temper tantrums, the toilet accidents, the demands her toddler is screaming. She wants to grab the child and hide from the public – she is my kin.

We have all been there to some degree.

Yes not all have to face the same reality some parents (like me and others) have to face and that is life.

But; we are all kin for we are all mothers, doing our best, loving our children with every fiber of our being and worrying over things we simply cannot change nor predict; but we will still worry because that is all part of being a mammy.

I for one am tired of seeing my kin being torn apart on social media for everything. From how they raise their kids to what they feed their kids – let’s stop.

We are all mammies doing our best.

We are all different but the love we have for our children is the same.

There is no other love in this world greater than a mother’s love (and fathers, but this is about mammies!)

To my kin, thank you and you’re not alone.

I feel guilty too, that we can’t, ‘just go’.

If we decide to make a trip, even to our local supermarket, it is planned, pre-planned with exit strategies all in place in case my son has a meltdown.

He cannot help these meltdowns.

He can become so overly excited or overstimulated that he has to let ‘it’ out, and letting ‘it’ out can come in bouts of laughter, screaming, violence, shouting curse words at onlookers …the list is honestly, endless.

I have two other sons, one who has ADHD and a toddler.

Both are very aware of the attention their older brother can generate on a seemingly average family outing.

My middle guy, (who also has ADHD) finds it hard to concentrate on rules and guidelines when out and about, he finds his brothers actions embarrassing – something I can understand (and hope he will soon be less embarrassed about) this leads him to walk away and we end up looking for him in a state of panic sometimes.

My youngest, the toddler, is currently being potty trained and loves nothing more than running off while his eldest brother distracts mammy and daddy, he can be found peeing absolutely anywhere these days.

My point is, it is hard to go anywhere with my three sons and something I don’t do by myself, ever.

The summer months will be long, where I will have to come up with games and entertainment all within the safety of our home.

I will have to rely on the weather – if it’s dry there is a local green park I can walk to with all three boys, but we can’t stay long.

The park is not suitable for my eldest son who has now become a wheelchair user.

He loves the chair but also loves to run, despite being in pain for days after a walk around the park, he will insist on bolting and this obviously leaves him in more pain which leads to more behaviour issues.

More guilt for me as the other two boys are running wild and free and so is Ethan, but I must reign him in and remind the boys we must go home soon. 

Ethan does not understand why he is in pain and cannot comprehend that less running and more wheelchair use would ease that pain. I don’t want to force him to stop running either for I know one day he will not be able to run or even remember how to run and boy does my Ethie love to run.

We don’t go to the funfairs.

We don’t go to circus.

We don’t go to beaches even though we live on the beautiful west coast of Ireland.

We don’t go to adventure parks.

We don’t go to friends’ houses for barbecues.

All of this would require so much planning, replanning and being on edge the whole time, that there is no point.

We end up snapping at each other or worse, losing our patience with our boys.

We do, ‘our’, things and we do them at off peak and off season times because that is just a little easier for our family.

We just can’t simply, ‘go’, and to those of you who can, enjoy it, relish it – it is a beautiful thing to be able to wake up and decide to go to the beach today just because it’s summer …

This summer we will go to the beach, we will take a walk through our city and we will go to the adventure parks…we will just do that when everyone else is seeing a dull day with the chance of rain, we will take that chance.

To the parents like me, hang in there, I know how hard it is to leave the safety of your home.

Even with all the planning in the world, our kids can throw a curveball in a second.

I hope you guys get to the beach this summer. 

The players:

– Ethan who has Hunter Syndrome and is 14.
– J, who has ADHD and is 11.
– Dictator (toddler) D, who is 2 and currently potty training.
– Ger (me) , who has no patience and is 30 ish.
– D (daddy), who just graduated college and is busy with interviews!

The Game: Survival of the Summer.          

The Rules: Survival.

The Strategy: Survival by any means possible. ANY MEANS POSSIBLE FOLKS.

Bribery

If you stop fighting/peeing on the floor/screaming/shouting -Mammy will…give you whatever you want just please stop for five minutes.

Adventure

If you sit and colour for ten minutes we can go on an adventure…never tell them where you may go, as this can lead to a lot of huffing and puffing about how, ‘mean’, you are.

Simply saying, ‘adventure’, can mean anything – the back garden to tidy up the toys so we can cut the grass… eventually; or a walk around the neighbourhood looking for snails in between those beautiful, ‘summer showers’. 

Rewards

Not unlike, ‘Bribery’ – give them a, ‘reward’, for playing nicely as soon as you see them do it – a reward can be anything from their choice of a treat to a small glass of wine for you – ‘cos you’re obviously doing something right if these boys are being quiet, right? Right!

Laugh

When everything goes wrong, just laugh…it confuses the lot of them and they will be shocked that you’re laughing at a poop in the middle of the floor.

Trust me, they will ask if you’re ok and then that’s your chance to say, could you help me please. 

Four times out of 10 it has worked… only on my 11 year old as the other two really don’t care and find poop and pee funny. 

Cry

This may seem terribly clever of me, but it works… simply cry. Hopefully you’ll only be pretending, but if you’re really going to, do what I do and demand a loo break.

These boys have no idea how to stop mammy from being upset, even the dictator stops drops and tidies up. It’s a move you shouldn’t use too often, as it can lead to, “Ah, come on mammy, you’re not even really crying.”

Walk/Run

When the opportunity arises with enough space to let them run, let them and time them and race them and challenge them!

The aim here is to tire those little legs out! And you’ll be getting in shape too. My lads love nothing more than chasing Ethan & I, while I push his chair down a slope. 

Ethan loves it and they try to catch us…Ethans brakes are excellent FYI!

Buy a kite

In fact buy one for each child. They are cheap and they really do they keep them quiet! And you can sit on the grass saying, “Ohh! Good job, run with it now, the faster you run the higher it will go!”

All while sneakily eating that bar of chocolate.

Ok, so these are not that helpful, but hopefully you’ll get through your Summer and so will your children. It is a hard time for most kids with extra needs. 

I guess my honest and truthful advice would be all of the above and try to remain positive. Get out as often as you can even if it’s just to the local field/park and run those kids!

Have a Summer if the weather allows it, if not make one, because let’s face it…in a few short Summers they will have their mates and then jobs and then a whole life where you just become the hotel and pass machine!

Never assume it’s because we haven’t tried.

Trust me, we have.

We have learned to listen to the things Ethan can’t say; we’ve learned to read him and we now know which situations are best avoided for Ethan’s sake.

Experience is the only way to learn this, unfortunately for all involved especially our Ethie.

The last time we brought Ethan shoe shopping was 2008. He had just been diagnosed with Hunter Syndrome.

Ethan has needed AFO’s and Pedro boots since he was four years old. Before they were introduced, Ethan only ever had three pairs of shoes, yes, three.

Ethan’s feet grow but they grow so slowly that, he rarely out grows any pair of shoes.

We decided that we would bring him into a new children’s shoe shop in our local shopping centre. I hated those boots and AFO’s, they were heavy, clumsy looking and I just didn’t like them.

My kid was battling a lot, we were facing a lot, but damn, those, ‘special’, shoes really annoyed me.

The shop assistant could have been an extra in, “High Five” – (a really, really annoying children’s programme, think Barney with adult overly nice friends). We smiled as she looked for shoes wide enough for Ethan’s little feet. Ethan’s feet are tiny but, boy are they wide!

“Hopefully she won’t take long,” D laughed as Ethan ran around the small shop yelling,”NEW SHOES”. J was only three and quietly sat in his stroller.

The lady brought over six boxes while we patted the seat for Ethan to sit beside us. He happily walked over.

“New shoes,” the lady smiled as he threw off his old ones, hitting her in the face. We quickly apologised, she joked about it being all part of the job.

The first pair, Ethan refused to try on, we didn’t force the issue. The next pair, he simply yelled, “NO WAY!” and kicked D for even trying to hold them close to him.

The third pair, “TIE DEM” he ordered me.

He jumped up, “WHOO-HOO! NEW SHOES!” we all laughed. He now had the full attention of everyone in the busy store. “You can check the fit when he calms a bit,” D smiled as he watched Ethan march, run, hop and jump in his new shoes.

“There’s the mirror,” she pointed at the full length mirror, “If you want to see your new shoes, Ethan,” she added, then pointed again at the mirror.

There happened to be only one mirror. In front of that mirror stood a beautiful little girl, who was admiring her own new shoes.

Beside the mirror where neatly stacked boxes of more shoes, from the floor right up to the ceiling.

Ethan ran over to the mirror knocking the little girl to the floor, she fell into the boxes knocking them over, which indicated to Ethan this was play time.

Ethan threw the loose lying shoes everywhere, I mean EVERYWHERE.

The little girl was now being sheltered from the over stimulated Ethan, who was trying his very best to see how well these new shoes of his kicked. D was trying to calm him, while I was apologising and picking up the shoes.

I may have even apologised to a few shoes too, who knows, I just wanted to get out of there.

Then I looked. I watched my son, scream, cry and shout while his Daddy tried to calm him. I watched Ethan look frantically around at all the faces staring at him.

He roared as his tears came fast, “NO! NO! NO!”, he roared as D hugged him, tight, from behind, trying to regulate him.

I felt my cheeks burn as my eyes stung, I was simply upset, while my son, my poor little boy, was having a complete break down over a simple task such as getting shoes.

I approached the sales assistant, thanked her, apologised again and I handed her the money.

She smiled, tilted her head and handed me a tissue.

We left the shop with a screaming Ethan, an oblivious J and two heartbroken parents who promised Ethan we would never, knowingly, let him go through that again.

Those, ‘special’, shoes don’t seem so bad anymore.

I rush about looking for, ‘theee perfect’, gift for each of the men in my life.

I think I’ve found the perfect gift until an advertisement on the TV, Radio, Internet or bus stop (of all places!) promptly informs me that I may have gotten it wrong.

The shops are telling me I don’t have the must haves while the postman is reminding me of my must pays!

I search high and low for Ethan; what do you buy a child who loves teddies but has every teddy you see piled high in the toy stores?

We rummage through his collection and pick a few to replace – Homer Simpson – that is the answer, this year.

Ethan’s current Homer teddy is so battered and torn that it has become fit for the bin…I can’t throw it away until I replace it…

Ethan won’t notice but I will, he has had that teddy since he was 2, I can’t just throw it out, can I?

My mission to find Homer began in September; including internet shopping, which honestly, I stopped because last time I ordered a teddy off Ebay for Christmas, the teddy didn’t arrive until January and cost me a fortune.

I found Homer three weeks ago.

D and I popped into the local toy store and as luck would have it there was a Homer and a Bart teddy…ish – they had soft bodies but hard heads.

We stood throwing them at each other in the middle of the isle, commenting on how soar one of those would be–this is purely market research as Ethan loves to throw things…many things.

Other shoppers giggled as they passed us while staff members asked if they could help us.

Turns out throwing teddies in a toy store is not allowed.

We bought both; the heads didn’t hurt that much and Ethan is losing his swing due to restrictive joints.

We headed towards the toddler isle; not for our toddler but for Ethan.

Every year, Christmas, you hurt my heart more when I’ve to shop in this isle for my teenager.

I know it’s not your fault, but it is hard when other parents and staff assume we have a few toddlers at home (yes, we buy that much, in the hopes that something will help Ethan engage).

Then comes the decorating, the photos and the visit to good ol saint Nick not to mention the school plays, concerts and the beautiful Christmas mass.

I hang decorations that all my boys made years previously, only with Ethan’s I can see the decline in his skills – again not your fault Christmas, but…

If I decorate too early Ethan gets caught in a, ‘loop’, asking over and over, ‘Santa?’ – he cannot comprehend time.

The camera is always on and ready to catch a moment when Ethan looks like any other child enjoying his family at Christmas…each year I snap more and more pictures trying to capture Ethan just being Ethan…Christmas, it is getting harder each year…I know it’s not your fault…

I video each Christmas morning, last Christmas I dropped the camera as Ethan had no clue how to open his gift….that was the hardest thing I have had to witness …I don’t blame you Christmas but you don’t make it easier as the years go on…

The pressure I receive from random strangers to well meaning family and friends about why I haven’t visited Santa yet is simply depressing.

It feels judgemental and condescending informing me that all children should see Santa.

My boys do see Santa just not Ethan, not in a public setting and certainly not with all my boys.

It is simply too hard on Ethan and us…that’s the truth.

However, this year, we decided to try a public visit as our toddler is so excited, which is lovely to see but also bittersweet.

With the help of a wonderful business here locally, Ethan and the toddler will visit Santa while Santa is preparing for his grotto to be opened to the public…people are wonderful, thank you Christmas for showing me that.

J, our middle guy, has a school concert in the evening; how I wish it was during school hours.

One of us can attend not both.

We cannot bring Ethan to a concert and expect him to sit through it…Christmas, I can’t remember the last time we went to such an event as a family…but that’s not your fault…

As for Christmas mass, we haven’t been in years, ever since Ethan roared at the priest to ‘shug up’ …thankfully the priest didn’t hear but those beside us did and they witnessed a sensory overload up-close and personal…it was hard getting out of the church quietly, with Ethan roaring ‘fug off’ and ‘shug up’… it was funny though, Christmas, I’ll give you that.

We will laugh and sing and get excited with the boys over this special season, but Christmas, sometimes I pretend, sometimes I want to cancel you and your glitter balls and hide indoors away from all the happy smiling children beaming with excitement

But then Christmas, I watch… I watch my boys, my husband and I realise as they play, laugh, fight and argue that this group is what you, my dear Christmas, are all about… family.

We will have ourselves a non-typical Christmas, we won’t decorate until the week before Christmas, we will sneak into visit Santa, there’ll be no family attendance at a school concert and there will be no Christmas mass…but there will be us, our little family enjoying whatever you bring us this year, dear Christmas.

We have learned to appreciate the littlest of moments and we hope those of you reading this can do the same…so what if the family photo isn’t perfect?

So what if your children sulk?

So what if the dinner is way later than you planned?

Take the time to just be….and that is really what my friend Christmas is trying to be about…goodwill to all mankind …may peace be in your heart and home over this Christmas season.

Thank you Christmas for always popping up, even though I find you hard, you are always there trying to remind me of your true meaning,

I get it.

Love,

Ger.

I no longer pray for a cure.

Terminal or life limiting conditions give you a perspective, one that’s different to most and one that you can’t really explain

When do you stop looking for a cure or a breakthrough in medical research?

I had spent years searching for the latest medical advances when finally, in 2011, we boarded a plane to Birmingham in order to take part in a new clinical trial for patients with Hunter Syndrome.

We spent five days in Birmingham.

Ethan went through assessment after assessment.

On paper, he was a suitable candidate.

We went back to our hotel room to discuss how we would afford the monthly trips to and from Birmingham, and how we could work our schedules so that J wouldn’t be too upset with us.

We even went as far as to decide which one of us took Ethan over for his first ever treatment.

The treatment scared us, but we danced around that and didn’t discuss it; instead we talked about hope – medical advances and all the other wonderful boys in America who were already on the trial.

The trial: the drug Ethan is already receiving would be put into his brain, as currently it does not pass the blood-brain barrier naturally.

They do this by first placing a port in Ethan.

That alone has huge risks, as Ethan has a very narrow airway, making intubating him a skill in itself.

Once the port is placed the drug is injected into it, a tube inside Ethan (and which is attached to the port) then bring the drug into the spinal fluid, the drug travels up the spine and into the brain and therefore, the hope is, the stability we currently see in Ethan from his typical ERT, we would see in his cognitive levels also.

Again this isn’t a cure but it is a way to keep Ethan from losing any further cognitive skills, plus his regular ERT – Ethan’s syndrome wouldn’t progress as fast.

We could have him in good health and cognitively well for a lot longer.

Imagine what it could do for a child who was only a few months old living with Hunters?

We sat with the doctor early the next morning.

We were getting ready to do Ethan’s final test and the one test which we were very frightened of: a lumbar puncture .

The doctor straightened his papers on his desk, asked a nurse to take Ethan for a walk and invited two other nurses to sit with us.

He coughed.

I held D’s hand as we watched him.

“Sit down please, guys.” He nodded at the chairs across from his desk.

I had flashbacks of Ethan diagnosis day; I knew this wasn’t going to be good.

“Do you want a cup of tea?” one of the nurses asked.

I shook my head as I stared at the doctor who was now scanning the top sheet of paper on his desk.

“Ethan has passed all our tests, as you both know”

He coughed again.

We nodded like bobble heads.

“I see here,” he glanced at the paper on his desk, “that Ethan had reactions to his ERT when he originally began treatment back in 2008.”

“Yeah.” I almost whispered.

“And Geraldine, I also see he has had a reaction as recently as 8 months ago.” He swallowed, hard.

I felt my heart drop.

I was nervous about the trial and the risks and the travel and…and all the other things that came with it…but I never thought about not being part of it.

It was a chance at life, a chance of Ethan living into adulthood with disabilities, sure, but it was going to give Ethan a fighting chance against Hunter Syndrome…a condition that medical advances might still find a cure for.

D’s voice boomed me back into the room.

“So, that’s it, is it?”

“Reactions are too risky. Eight months reaction-free is just not enough. We can’t put him through a lumbar puncture knowing he has had reactions; there would be no point.”

“Well, Doc, I can’t lie. We had it all planned, we were very hopeful, you guys let us be! We knew there were risks, Jesus, but ..but if…”  I stopped D mid-sentence.

“One question Doctor…if he were your son?” I squeezed D’s hand.

His voice bounced off every wall of the office, while one nurse rubbed my back the other tried to explain to D exactly what the doctor was trying to say.

“We can’t be part of it, can we?” I said as I felt my tears fall.

“Geraldine, D…if Ethan were my boy, I’d thank the doctor sitting in front of me, thank the staff at the hospital and I’d bring Ethan into the town center and enjoy your final day here in Birmingham.” He stood up, walked around to the front of his desk and placed his hands on his lap.

“If Ethan had a reaction, there is nothing any of us could do. It’s not like we can stop the infusion, like they have done with his regular ERT. This drug will go straight to his brain, a reaction will either take what he has left or kill him. So, my answer is: he is here, he is doing well; I’d bring him home.”  

He stood up, then knelt back down by my legs.

“I am so very very sorry.”

He was genuine; I could see that he was sorry.

I wiped my eyes while D thanked them all…we took Ethan and went straight to another Hunter family in Birmingham.

And that was when I stopped researching, stopped hoping for a cure (for Ethan, in his lifetime); I began to, ‘live’.

I don’t keep up to date on the trial, which is still ongoing, but I do know that it is successful and that there is huge hope for an actual cure.

I know money is a huge issue, as research and trials all cost money.

That upsets me; money shouldn’t be an issue when there are lives on the line.

Will Ethan be offered the drug if it becomes standard treatment for Hunter Syndrome?

That I don’t know, I don’t think about that… I can’t live with, “ifs..”, and, “buts…” – I need to be able to live.

But what I do know is that it will become standard treatment (eventually), meaning those younger boys or newborn boys will have a better chance at an average life than they do now.

Hope is alive and well… I do believe with every fibre of my being that they will find a cure; I just don’t believe our 13 year old boy will be here to benefit from it… that is not fair or even remotely OK… it will come too late for many but for many it will indeed save them from watching their child die and that – that – is the hope that brings me to where I am today.

Yes, I do have hope and faith in medical advances and the ongoing trials… I just don’t research them anymore – I am learning to live, laugh and love.

Yes, that is me.

Ethan has taught me many, many things… (Below is  just the tip of the list!)

Know when to say sorry and know when to smile.

We were walking along a busy path, Ethan suddenly stopped.

He had just spent the previous eight hours on a children’s ward being poked and prodded.

He was not allowed any food. He was hungry. Our car was parked across the road from the hospital; a five minute walk away but that to Ethan may as well have been a hours hike away.

“FUG OFF”  he wriggled, trying to loosen my grip. He bit at my hand.

Kicked my legs, his face contoured with rage “FUG OFF”.

He was drawing an audience.

A woman, who was passing us on the path at the time of Ethan’s little performance, tutted. Ethan’s leg made a connection with hers as she tried to brush past me.

“FUG OFF” he spat as I tried in vain to calm him.

“Manners!” She stopped, just out of Ethan’s reach.

I didn’t take my eyes off Ethan.

She repeated herself as our audience grew.

“We go get food,” I signed to Ethan. “Ethan hungry.” Ethan signed back. I rubbed his back as I loosened my grip on his hand. “Lets go.” We walked away.

I looked ahead of me and saw a young mother with her double buggy, she smiled at me as I passed with a calmer Ethan.

“Sorry about that,” my eyes stung as she let us pass, “No problem at all. He seems happier now,” she smiled. I smiled back.

Helicopter moms rock!

Ethan has shown me how important this skill actually is. If I were not a helicopter mom, not only would both my other boys  have more regular visits to A&E; but yours would too, especially when Ethan sees a slide he can actually climb up, unaided – local parents, you are welcome.

Communication 

Ethan used to speak, then he used sign language, then he used Lámh (actions with a few signs, think Mr Tumbles!), then he used pic broads, then he used two words sentences, now he points and uses the odd word to communicate his wants, demands and ransom.

Communication is a beautiful thing.

I was once outed as a bad mum at a bus stop.

The usual crowds and opinions  were being thrown at me; Ethan was only diagnosed with a hearing impairment at the time,  I had not grown my thicker skin by then and was certainly not used to being outed in public by strangers — so I signed, “Mind your own business!” they just looked blankly at me while we got on the bus.

Other children can be little gems.

I had an awful morning at a few appointments in the lead up to Ethan’s diagnosis.

We were left waiting, Ethan has never been good at waiting. My patience wasn’t as tolerant as it can be now!

I approached the secretary and inquired as the length of time we had left to wait to see this ENT (Ear, Nose and Throat) specialist.  “Ammmm, there’s a boy before you so maybe 15-20 minutes.” she smiled.

I will not lie; I wanted to scream, “Hurry on, can you not see my tornado running wild?!”

“He is a bit..” She paused and leaned closer to me, “Hyper” she nodded at Ethan.

Well done, Sherlock.

I smiled and gave chase while saying, “Oops Ethan that’s not yours now, be nice, kind hands…”

Another boy’s named was called while I was sweating and probably in the process of loosing about half a stone.

The boy tapped my arm, he was roughly 10 or 11 years old, “He can go in first, if you want,” he nodded at Ethan who was now throwing the contents of my handbag on the floor squealing with delight.

“Oh, wow!” I may have been over enthusiastic as the room suddenly quietened. “Wow. Are you sure?” I lowered my voice. He nodded. “You’re a credit to yourself kiddo and your parents,” I nodded at the woman glowing with pride in the corner.

“Thank you,” I shook his hand.

IEP (Individual Education Plan)  Over the years  attending these meetings in various schools, I used to spend at least 40 minutes explaining Ethans behaviour.

It was so long winded, no matter how many times I insisted Ethan cannot help but lash out, they never really understood until I narrowed it down for them: Ethan does not discriminate – he will hit anyone.

They have agreed after spending time with Ethan that this sentence is very very factual.

Sleep – is it really that important?

Despite Ethan’s best efforts, I believe sleep is that important. How to get a full nights sleep is still a work in progress.

Time

Do nothing… do something… if it’s time spent enjoying your favourite TV show, then it’s time well spent.

No one, no one has limitless minutes – time is not mobile phone credit;  you can’t buy it.

Laughter is the music of the soul – fact!

Ethan laughs. Ethan laughs at cartoons.

He laughs at me when I stub my toe.

He laughs when I sing (He has good reason to).

Ethan laughs when you tickle him.

He laughs when you chase him.

He laughs when you make funny faces.

Ethan laughs when I gobble him (basically kiss and cuddle him all at once).

Ethans laugh is pure.

It comes right up from his belly and out through the tips of his curled tiny fingers. His laugh is contagious. His laugh is innocent and is my favourite sound of all time.

Live, love and laugh…the three ‘L’s … Yes, I am that unapologetic mom ~ Thank you son.

I recently had to see the doctor.

Not because I was physically ill.

I didn’t even schedule the appointment; my husband did.

I needed to see the doctor, but my friend wouldn’t allow me to.

As I sat waiting for the doctor, my friend crept up through my body.

My palms began to sweat.

My heart began to race…the doctor is going to laugh at me…there is nothing wrong with me…what will I say…how long is this going to take…I have to be back to collect Ethan…did I sign that thing for J?…will the doctor think I am going crazy…I think I’m going crazy…I am so tired…I must remember to ring Temple Street…is it bin day tomorrow?…the doctor will laugh…I know it…God, I’m weak…

“The doctor will see you now, Geraldine”

Later that evening, as I tried to learn more about my friend, I learned that 1 in 9 people will have my friend with them throughout their lifetime.

That floored me.

No one talks about my friend.

I contacted a few other parents in my situation (they all have children like Ethan), although my friend can become anybody’s friend, I wanted to speak with my kin, my safe people.

I asked them straight out if they had my friend too.

I discovered that there are many different versions of my friend; my friend was just a version of somebody else’s friend.

I learned that there are many different treatments which can help ease or help live with my friend .

I learned what works for one person’s friend may not work for my friend – and that is O.K.

I learned there are still some whispers around my friend – I received many private messages answering my question, while many others simple commented openly on the thread.

I learned that was OK too…it is up to me how I choose to deal with my friend; the important thing is that I deal with my friend.

No one wants my friend…hell…I don’t want my friend; I worry all the time, I don’t sleep, I build up a simple task into something so much more, I lose focus, my belly churns at the thought of doing something I don’t normally do or going somewhere I’ve never been or meeting new people, I find it hard to breath…it is endless and relentless.

My friend has a name: anxiety.

And I am not alone.

I am now learning to manage my anxiety, not trying to cope with it, which I had been doing for years.