In my mind already I had planned our journey, what to bring, when to set off and where to park almost 50 times at least.

There have been nights where I’ve struggled to get to sleep because I’m churning over and over in my mind what the outcome of this meeting will bring.

Will it get us any closer to where we need to be? Or will I come away fighting the tears, bitterly disappointed that we are no closer to an easier life.

I have rehearsed several times how I am even going to say hello to you. I am nervous of you seeing me with my child – do you think I’m a good mum?

I wonder to myself if you are also a parent and how much you can relate to my situation.

It’s hard in a clinical environment to know if you see us as just another patient adding to your waiting list and work load. Or if you try to visualise yourself in our situation and how you would cope.

I bet you work long hours and sorely miss your family. Though you are well paid I bet you are overworked and exhausted and wish you had more time away from here.

I hope that this doesn’t cloud your judgement and make you feel less compassion for us.

I have always felt intimidated walking into a clinic room full of people, all watching me tell our story.

I’m not necessarily a private person but it can feel quite one sided and scary telling every private detail of your life with your child.

Last time I came you noticed my voice start to crack as I fought my emotions talking about my daughters feeding difficulties.

I want you to take me seriously and know that I’m not just an overly emotional irrational person.

Some nights I stay up late and dedicate a lot of time to reading medical journals, and interacting with other parents on forums who have been through similar challenges.

When you clock out and go home to your family I am still there, running those 24 hour feeds, always trying to find answers and ways to make life less painful for my daughter.

I hope that you see me as competent. I have looked up so many medical terms and tests and procedures so that when I come to you I feel in the loop.

I don’t want to be intimidated by medical jargon, or have you suggest something I had never even considered. I hope it doesn’t come across as me being a know it all – because trust me, I don’t!

But I don’t want you to think I have no idea what’s going on. I don’t want to appear cocky, but I don’t want to look clueless either – I want you to know that I am an expert in my child just as you are an expert in your field.

When I come in to your appointment I half know what it is I want the outcome to be.

It breaks my heart when you don’t agree.

I have a huge amount of respect for your work that you do and I take on board everything that you say. But at the same time I have learned the hard way, many times, that a parents’ instinct is not something to be shunned.

You may have seen many children with similar issues to my child, but you see, I spend pretty much 24 hours a day with this child and I see a lot more than anyone could see in a 30 minute appointment.

So whilst I put a lot of trust into you, I also have to go with my gut… and that’s a scary thing to have to do.

Sometimes your appointment will appear as a last minute cancellation. Instead of my months of planning and panicking… I now have to condense all of that into just a few days.

It will usually mean rearranging other appointments and maybe missing school or respite. I come to you hoping hard that those cancellations and missed respite hours are worth the miss.

I know it’s a cancellation, but I can’t help thinking – what if they think this is urgent? Is there something going on that I don’t know about?

The paranoia is strong and every interaction leaves me analysing your words for weeks after the appointment has gone ahead.

When you order those tests, prescribe those meds, and tell me to expect a call or a letter – I wonder to myself… is this one of those promises where I will wait for months and inevitably end up making several calls to chase this up?

Or will it all happen as promised.

I know that it isn’t because you can’t be bothered, but sometimes it can feel that way. We like to know that things are happening behind the scenes to get us to where we need to be.

Before my child entered this world I never even knew people like you existed.

It can be hard to hear someone talk so candidly about major surgery, as if it were something as simple as switching on a kettle, or driving a car. This is my daughter.

My living, breathing, amazing daughter.

I have seen her go through so much pain and I’ve had to make some horrible decisions that I hope one day she will understand I didn’t take lightly.

There are surgeries I have refused that I wonder – should we have done? Sometimes I wake up with night terrors and night sweats, re living sending her to theatre.

Her unsuspecting, vulnerable little face, with no idea what is going to happen to her next. My heart pounds through my chest sometimes, the same way it did whilst I waited to know that she was okay.

So much time staring at a clock, wondering what was happening but also glad I couldn’t see the brutality and gore involved in these procedures.

I wonder to myself how you got into your profession. I find myself so grateful that you exist, and that you know what you do. Because without you this would be so much harder.

I even have dark thoughts – I get scared thinking that what if you don’t like us. I know how ridiculous that sounds.

But do you like working with families like ours.

Do you have respect and care for people with severe neurological impairments? Or do you ever view us as a constant nagging inconvenience?

Because sometimes some of the secretaries make us feel that way. I get worried that you may see us as a burden – after all your job would probably be a lot easier if we weren’t on your case load.

But on the other hand, with your work and our compliance, you could make some amazing medical break throughs and transform the lives of many.

How incredible would that be?

When I leave your appointment I sometimes feel the crushing weight of my childs’ diagnosis, a reality check on how hard this can be for us. It’s hard, and nothing can prepare you for those emotions.

As I drive home I feel a combination of hopeful and fearful. I think of all of the other things I should have said and berate myself for not always being able to answer every question.

I think about how other parents do their journey home and if they have similar feelings, and I wonder how many people out there are having the same issues and how they go about resolving them.

I wonder if it will ever get easier and if there is a miracle medication or procedure that can fix all of this.

So I return home and continue my cycle of coping, researching, obsessing and hoping… waiting until I see you next… waiting for that letter to come through the door.

I mainly blame my mother for this tendency. I was exposed at a tender age to every Hollywood musical known to man.

Family members were routinely subjected to yearly attendance at a 3 hour pantomime.

My dancing teacher was a huge believer in inclusion. Ability and talent mattered not a jot.

Everyone should have a chance to shine. Everyone. It was quite a large dancing school. She was not gifted with editing or quality control skills.

Apart from giving me a lifelong fear of amateur dramatics, because of resurfacing guilt, it has only reinforced the feeling that singing everything is definitely the way forward.

Fortunately, my family tend to agree (the slow drip approach of brain washing works well I find).

Pearl’s school is run on Conductive Education principles, which rely on repetitive movements paired with simple repetitive songs.

The die is cast. Entering our house is like a second class, badly written version of Calamity Jane (which is, incidentally, also what I’m considering changing my name to).

On the naming front, I can highly recommend calling your child Pearl. It is relatively unusual, meaning naming labels don’t require a surname.

Pearl is remembered and her record easily traced by all hospital departments, as they don’t tend to have another under the age of 80.

Most importantly Pearl is easily replaced in songs.

“I kissed a Pearl and I liked it”

“My Pearl’s mad at me”

You get the picture.

And then courtesy of Elkie Brooks she has a song of her very own. (“Pearl’s a Singer” for anybody under 40). Pearl does indeed often “stand up when she plays the piano”

The lyrics can be changed on uncooperative days to “Pearls a whinger”

I hope this is character building, it usually distracts her and makes her laugh. Whatever gets you through the day.

I have recently been ‘enjoying’ a particularly long-lasting flu virus with a very bad grace.

In the middle of this a cock up from our Local Authority, landed me with a call suggesting that my nonverbal, doubly incontinent child could have her secondary education effectively provided at our local High School.

The same High School that had been unable to cope with our articulate, high functioning, academically able, son with Asperger’s.

It seemed unlikely (yes really!) for this placement to be successful.

I had in fact attended a two hour meeting a fortnight previously where I had discussed and agreed the perfect setting with a Local Authority staff member. I was not happy.

Incandescent rage goes some way to describing the way I reacted to the news, and was apparently a good negotiating tool, the problem was quickly resolved.

Entering Pearl’s bedroom the day after this fiasco, and still feeling lousy I was greeted with charm, panache and a cheery hello (one of two of her recognizable words).

She was warm, giggly and cuddly the perfect, cheering, combination.

As I began the usual, dressing and washing procedure, which is not without its challenges, all I could hear in my head was a paraphrased JayZee.

“I’ve got 99 problems but my Pearl ain’t one”.

Life with a disability can be a struggle, but it is often the environment the lack of support, and the daily grind that is disabling.

Filing cabinets of admin and frequent appointments can really leech the joy out of your life.

A friend of mine not in the Special Need Parents Club, looked in fear at the severe and complex disability and health needs of a mutual friend’s disabled child.

“But what does she think when she looks at him?” She asked.

I thought of the Mother/Carers face when she looked at her son, full of love, knowing, and shared stories.

I think she usually thinks “That’s my boy” I replied.

And on days when love isn’t enough and the physical and emotional strain and reality of Caring is overwhelming, there’s always song.

I’ll see you Somewhere over the Rainbow, the skies there, well you know the rest.

Until then So Long, Farewell, Auf Weidersehn, goodbye.

In the last quarter of 2016, we spent quite a few nights in hospital with Ethan.

We watched helplessly as hunter syndrome ravished our son’s body and mind.

It happened quickly and out of the blue, for us.

Not so out of the blue; as doctors and specialists had pointed out to us at the time (over and over) – “Hunter Syndrome is terminal and can progress differently in all children who have it, the only thing that is the same is the fact that it is a terminal condition. We are so sorry”

I can tell you; when doctors and specialist are telling you that they are so ‘sorry’; you still can’t quite believe that your son is terminally ill. Yep, even that far down the rabbit hole you still cling to hope.

Like many parents who face that kind of reality, we decided to disagree with the doctors and fight them at every step. They wanted to sedate Ethan. We refused.

They wanted to take away all medications, as these were obviously not helping, we wanted to try milder medications and sadly, we did agree with the idea of a peg to feed Ethan, as Ethan had lost too much weight and was finding it difficult to eat.

There were no shouting matches with doctors; everything we suggested they tried.

They however, always gave us that gentle reminder that Ethan has a terminal condition which will end his life during his teens.

Doctors have to keep you in touch with reality while trying to help you cope too. We are forever grateful to all members of Ethan’s team, especially over those long, hard months.

It was only when we would repeat these conversations to family or close friends that we would see their reactions that we began to realise that we were numb to what the doctors were saying or deluded or in denial, whatever word our family, friends and doctors really thought about us, at that time.

We were never fully sure which we were so we decided that we were numb, it sounded better than being in denial.

Eventually our boy came back to us, not completely but mostly.

We did have to accept that Ethan would never be the same; that Hunter Syndrome had taken some things from him which he could never get back.

But the reality of Hunter Syndrome is exactly that; it takes and takes changing our kiddies each and every moment that they are alive.

We are well used to finding a new ‘normal’ with Ethan.

We just never had to find our way through such a rapid, spiraling new ‘normal’ before this.

Ethan has always been declining but much slower and only in a way that you’d notice if you hadn’t seen him in a few years.

This decline took the floorboards from under us, not just the carpet.

I say accept it but the truth is we can’t ever accept it, we just move with it. For example, Ethan is now linked in to a hospice.

That shattered our hearts but we do think it is something our family needs the support of.

In the second quarter of 2017, Ethan began to take medication we felt he would benefit from …and so our boy came back, little by little, bit by bit.

He went from not eating to only needing his peg for medication.

He went from not communicating to talking, laughing, playing and engaging with us.

He went from violent meltdowns to one meltdown maybe once or twice a week, with zero violence.

Despite me saying we had argued with the doctors, without their support for us and Ethan, we would never have Ethan as he is today.

The doctors are the reality givers not the hope makers; parents are the hope makers.

We began to give Ethan ‘Charlotte’s web oil’ in April 2017. The changes were subtle at first, we were even afraid that we were imagining them.

School saw the difference. Respite too. Doctors and those who called regularly to see Ethan noted the difference too.

He was indeed stabilising and happy once again.

With a condition like Hunter Syndrome, having your child stable is a huge thing.

Our boy started to come back to us, with little bits of speech coming back to him, his love of jigsaws, TV, music and his affection for us returned by December 2017.

It’s now a New Year.

January 2018 and I really hope it is for Ethan; in with the old and out with anything new regarding Hunter Syndrome.

I want Ethan to stay the same, even though I know that’s not realistic, I can still hope after all hope is what got us through last year.

Hunter Syndrome showed us the speed it can amp things up at last year…but it also made us enjoy our Summer, take longer days out with all our boys, it made our Christmas very special, it showed us once again how precious time is…

We hope this year it continues to show our boy some mercy so we can enjoy him for that bit longer.

What’s your in with the old and out with the new for this New Year?

My very first thought when it arrived was “how come this box isn’t very heavy?”

I was shocked that the parcel had hardly any weight to it at all because I knew what was in it and anyone who has ever used disability equipment will know it usually weighs a ton!

Whoever designed the splashy seat deserves some sort of award because not only have they designed something which looks brilliant, they’ve done it without the need for their customers to use any screws, bolts or allen keys to put it together.

I was so shocked at how simple this piece of kit was to put together – (Ikea please take note!)

The seat itself came in 3 parts, the base, the seat and the backrest, which slot together really quickly and easily.

The seat and all the accessories, are made from a lovely soft material which feels a little like the foam they make flip flops or crocs from.

They are completely water resistant and warm to the touch, which I really liked as most bath supports are cold hard monstrosities with scratchy netting and straps which never seem to dry so they are always cold and damp when you do them up.

The Splashy seat has an adjustable backrest so you can sit your child nice and upright or choose to recline it a little if that is easier for them.

We like to use it in its most reclined position so that William can be submerged in the water and relax for a while.

The optional bumpers can be placed wherever you wish so they can be used as head or lateral supports. William doesn’t have very good head control so, for us they were ideal as head supports.

We have a height adjustable Astor Bannerman bath and the Splashy fits with plenty of space to spare.

Although William prefers to be reclined, sitting upright was a real novelty for him as none of his previous supports have offered that position.

So he has been able to have more fun in the bath with some toys and a lot of splashing which he loves.  I also find it is a little easier to wash his hair when he is sitting more upright.

My only real negatives about this seat would be:

a) It doesn’t come in bigger sizes.  William is now 8 and there’s not a whole lot of room for growth left in this which is a real shame, perhaps Firefly might consider making a larger size at some point.

b) It is difficult for us to use this seat if we want to hoist William out of the bath, because we usually hoist up and then fold the changing table down to lay him on.

The height of the chair means we can’t do that and would have to take the chair apart or remove it before we can put the changing table down, so it would mean William is left in the hoist for a few minutes.

Not impossible, but certainly tricky.  If the seat could recline a little more without taking it apart then this issue would be solved easily.

We have also used this seat in other ways, it was a big hit in the school paddling pool and William loved having his feet in a big bucket of water in the summer time, so he could kick about in the garden.

One of the best things about this is the cost, it is not as expensive as a lot of other special needs equipment on the market (we had to pay over £800 for a car seat last year!) and it really is worth every penny.

I always felt at New Years that it was amazing. It was like starting your life again, anything was possible.

I would write a bucket list and excitedly plan to tick the activities off. They were always realistic, but they were things I would never do in a million years!

– Go on holiday and snorkel

– Get a promotion at work

– Buy outfits not in the SALEs

Even when I had my first child, my beautiful daughter, although the resolutions slightly changed, they were still things that were exciting, things that I thought could change my life or at least my perception of life.

– Go abroad for a Mummy daughter holiday

– Get annual passes for all the local attractions

– Get lots of ‘mum’ friends to go to the coffee shop with

Then my wonderful son came a long and my resolutions started to slowly change.

– Go to the supermarket without a meltdown

– Go a different way to school then the usual route, without a meltdown

– Teach him one emotion and how to respond to this emotion appropriate

My resolutions were no longer resolutions to make my life more exciting, or to make my daughter’s life interesting and more cultured.

They were resolutions to help my son cope with everyday chores that need to be done.

They were resolutions to help him survive in a world that although is slowly accepting diversity isn’t perfect and still has pit falls

I was making resolutions that seem so simple to some and so hard to others.

I still vividly remember my first trip to the supermarket with my son. It was far too crowded and we bumped into his SENCo (Special Educational Needs Co-ordinator) from school.

This just made him stim. He was flapping his arms, making his squeal noise that shows his anxious, and started to bump his head on the trolley.

It was soul destroying for me as a mother as I was the one who put him in that situation. I was the one that took him to the supermarket, I was the one that put my boy into a situation that made him feel so uncomfortable.

I know that I will not always be able to cross off all of my New Years Resolutions. I know that there are some that I wish I could get but know that if they happen will be a miracle.

I would love an, “I love you Mum”, but I am more than happy with, “I like you Mum”.

The little stepping stones I can cross off my list means I can prepare my son for the outside world, where I won’t be able to be with him all the time, where the outside world can be harsh and cruel.

Where the outside world can change the plans with no warning and where people can openly be terrible.

I love my son, I love his world and I wish everyone could.

For now I have my New Years Resolutions, you never know maybe one year the world will have changed their opinion and be accepting and understanding, but until this happens I will put my sons stepping stones in development down as my wishes for the year.

This year however, we did something which we knew would start our New Year off very differently…

She was what we had been searching for.

Her glossy white coat sprinkled with brown specks made our hearts light as we watched her play with her brother.

We had waited a long time for her.

She wasn’t a whim and she wasn’t something we ever thought we could re-home if it didn’t work out. We were here to add to our family.

We searched for years for her. We wanted her and on some level we needed her.

Our family is unique. All families are, I guess.

Our middle son has wanted her for more than half his life. Every Christmas and birthday he’d ask – “Do you think now is a good time to get a dog?”

With a younger brother and an older brother with a life limiting metabolic condition, life for us was definitely hectic.

What is it they say about the middle child? The one that is often forgotten about or overlooked?

Having a child with a terminal illness can cause you to overlook the middle, the youngest child and even yourself.

Our middle guy has his own difficulties. He has ADHD; making social issues a little bit harder for him.

A dog was really, the only thing he had asked for, for years.

He once wrote a contract, stating his responsibilities and plans for his dog, all I had to do was sign and get a dog.

He was nine years old at the time and cried his heart out when I tried once more to explain why it wouldn’t be fair on not just us but the dog, if we were to get one.

Dogs and childhood, eh? They, in my experience and my husbands, go hand in hand.

We both had childhood dogs and we both knew the value of having a dog.

“When is the right time?” He asked a few months ago.

“I don’t know, but I will know when that time comes” I tried to fob him off.

“Mammy, I think the time is now. D is 4, so he’s not a baby. I’m almost 13, so I can take the dog for walks alone and Ethan is doing so well. Please mammy, talk to dad and see if the time is nearly right.”

I let his words ring in my ears and that night I began to put my years of research into action.

Finally after a few months and unbeknownst to any of our boys, we met up with the one and only ‘Lola’.

It’s funny the opinions people have when you talk about dogs; ‘Don’t get this breed”, “Don’t get a big dog”, “don’t get a small dog”, “What about Ethan? What if he hates it?” …people seemed to think that we didn’t do any research or that we didn’t consider how Ethan would react.

Two weeks before Christmas we met her.

We fell in love instantly.

She jumped into my arms and kissed me. Her gentle nature made us question if she really was just under four months old.

We took her home and waited to surprise all our boys but especially our middle guy.

It’s nearly a month later and ‘Lola’ has settled in very well.

J , our middle guy, has stuck to his word and has kept her water dish filled, fed her when required to, walked her and is in the process of teaching her to ‘give the paw’.

Ethan doesn’t care much for her, but she tries every day to get a pet from him. She knows not to get too excited when greeting Ethan and she even knows he is the one most likely to drop food.

Ethan however, does enjoy throwing her ball and watching her run for it. His laughter is music to our ears.

The four year old, D, adores her and thinks she’s like a teddy, as she lets him cuddle her, kiss her and of course they enjoy playing together.

She has brought responsibility into our home, normal, average, boring responsibility – instead of helping me with Ethan, J now sees to ‘Lola’.

We are delighted he has a little buddy of his very own who shows him love and appreciation.

A boy and his dog, really there is no better friendship to witness.

And, to be honest, she has lifted my spirits. I am a dog lover, I always have been, .

This little lady has given me a new lease on life, an excuse to exercise , a reason to play and a way to unwind, she is literally laying on my lap as I type.

Our New Year began very differently from all our other New Year’s, this one began with more. More of everything in our lives.

More fun. More reasons to laugh. More adventures. More love. More playfulness …more of life, average, boring, ‘normal ‘life and we are loving it!

That’s more than I can say of many of my friends though, some of whom seem to spend more time in hospital than they do at home.

Yet despite the stresses of being on the ward 24/7, they never moan, they are always happy and are still always the first to offer help to others.

So, when I asked them for their top tips for spending time on the children’s ward, I was not surprised by how much information they had to offer.

Most blogs will focus on how to make things easier for the kids but here are some little tips and ideas to try and make your next stay on the children’s ward a little more comfortable for you as the parent!

1. Keep hydrated.

This probably seems obvious but keeping hydrated is difficult on a hot children’s ward.

Take your favourite brand of tea or coffee with you and your own mug (because hospital mugs are a bit grim!) but remember that caffeine will dehydrate you so try to alternate each hot drink with a cold glass of water.

2. Stay Healthy

It is important that you eat nutritious meals so you have the energy to look after your child and yourself so try and stock up on some decent quality ready meals to heat up in the parents room microwave (presuming they have one!).

Make sure the meals include some vegetables & buy some fruit to keep you feeling healthy while you’re there as well.

Shops in the hospital can be pricey so try and get to an off-site shop if you can or rope in some friends to do some shopping for you.

You could even ask them to make you some dinners to reheat in the microwave.

3. Get some sleep

This is really important but it can be tricky if the ward is noisy or the nurses are doing regular checks on your child.

Ear plugs will help to block out the noise of snoring patients (or parents) and the constant beeping of machines.

Don’t panic about not being able to hear when the nurses come around, if they need you they will wake you up so take the opportunity to sleep while you can.

The beds on the children’s ward are often narrow and uncomfortable but you can make them a bit easier to tolerate by bringing your own pillow and blanket to help you sleep especially if you are going to be there more than a couple of nights.

4. Get a break

Try and get out of the hospital at least once a day, even just for 10 minutes.

Ask the nurses if anyone can sit with your child for a little while if they can’t be left alone (if the ward is busy this might not be an option), or if a friend is coming to visit maybe they could sit for a while so you can go for a quick breath of fresh air.

If your child is under the care of a children’s hospice, sometimes the nurses will be able to come and sit for a few hours so you can get a break and maybe even go home for a shower.

5. Pick clothes wisely

Sitting next to a hospital bed all day requires comfortable clothes!  So, don’t be afraid to ‘slum it’ in comfy joggers and t shirts.

It is always hot on the children’s ward, so you will want short sleeves and thin trousers but do make sure you have layers, and a coat, as it will feel extra cold when you go outside for a walk.

Of course, being on the ward for a long time means it is a bit hard to do any washing but if your friends and family ask if there’s anything you need then ask them to do some washing for you!

It’s also wise to take some comfy shoes, flip flops or even slippers so you can slip them on and off easily.

In fact a common response when you ask a pregnant person whether they would like a girl or a boy is; ‘As long as the baby is happy and healthy then I don’t mind’.

So what happens when your baby is born with a disability?

When we found out that our baby had a disability and wasn’t going to have the life we originally mapped out for her, I crumbled.

On the outside I was strong, I would tell people she was special, that as long as she was smiling, I am smiling. Then I would scream and cry when I got behind closed doors.

It has taken a year for me to realise that yes, I would have preferred my daughter to have a life that isn’t full of appointments and uncertainty of her future. Yet I wouldn’t change my daughter at all.

My daughter is full of determination, she is full of smiles and she loves cuddles.

My daughter sees what other children are doing and she finds a way of doing it, just in a different, outside the box way.

My daughter does get tired a lot quicker than most children, however, when she is awake she is making the most of every minute she can move, she is not lazy.

My daughter can play with her siblings even if it is slightly different to the way I had imagined.

My daughter is still loved by her family and friends.

My daughter is still loved just the same whether she has a disability or not.

I would still fight for my daughter until my last breath, which I would do for all my other children.

My daughter is still my daughter, whether she has a disability or not.

I never envisaged my family to be how it is. I wouldn’t change it for the world.

Each of my children teaches me new things about myself every day. My baby is teaching me how strong I am, she is teaching me determination, and she is teaching me patience.

My daughter still doesn’t have her diagnosis, however her symptoms aren’t good and are pointing to a life limiting condition.

This is the only thing I wish I could change about her.

She is so happy and while she is smiling and fighting, that is exactly what I will be doing.