They were shocked that there wasn’t some sort of service or financial help towards the cost of this chair other than to take out another loan from my dear pals at the credit union.

I was shocked that they were shocked.

Is that what the general public think; Ethan needs something, I apply for it and we get it ?

Ethan has no comfort in his wheelchair; a wheelchair which was given by the HSE to help Ethan take breaks when he was out and about. It was never meant for Ethan to use as a chair inside his home.

Ethan has lost a lot of weight and his joints are becoming more restrictive. His mobility has declined so a basic wheelchair really isn’t something I can let him use as a seat. It isn’t a seat. It is an aid when out and about. He is now less likely to even walk for a few minutes so it has become a very basic wheelchair.

Asking for a new wheelchair is a little like asking for a lotto win, they will adapt the chair but a new chair (since Ethan hasn’t grown) is out of the question. Adapting the chair involves adding padding to the sides and a headrest, which is still something I am waiting on, a month has passed and counting...

I applied for a feeding chair too, through the community occupational therapist (OT). I did ask could I apply for a recliner of some sort too. Her response was “We don’t do them”.

The feeding chair is currently on the back burner until funds become available, whatever that means. I am afraid it's going to be like that time the HSE approved a trike for Ethan, in 2010...it’s now 2017 and we still don’t have the trike.

That's the reality. Not what's written on the websites regarding your child's needs being met, the reality is you go on a list regardless of your child's specific needs; we are all lumped into the same box. You go on the never ending list, which makes you wonder who is it that is really getting things from this infamous list? I've spoken to plenty of Carers all on the list none of them getting anything...I would love to see these lists.

Obviously the trike and buggy are no good to us now  that Ethan's syndrome has progressed.

What do parents do?

I was lucky with the trike; years ago I took part in a documentary called ‘Ireland's Miracle Children” with three other families. One of those families created a charity called ‘Cycle for sick Children’, they donated a trike to Ethan shortly after filming the documentary. Ethan had his trike and boy, did he love it.  It kept him mobile for much longer than any of us thought.

He outgrew it and I donated it to another family who also needed a trike; depending on your child's needs a trike can cost up to 2000 euro.

The adaptive buggy broke my heart. Emotionally I wasn’t ready to even ask for one but having watched Ethan struggle I had no choice. After six months I realised that the HSE were not going to give us a buggy, so I scrimped and saved and bought Ethan a buggy costing 1300 euro. Then I had to buy all the accessories which added up to another couple of hundred euro.  

There is a group on Facebook for parents like us where we can buy, swap or sell equipment, sadly a lot of the things our kiddies need are designed just for them, so it’s hard to find certain items there. I placed Ethan's buggy up there and was heartbroken to see the amount of families that needed it, randomly I choose one family to give it to, but I was very emotional over the amount of parents...just like me, unable to afford the things that their child needs and begging the HSE for help.

When it came time for a wheelchair I did get that fast, I just think it was luck and down to the wonderful community occupational therapist (OT) along with the seating clinic. I again bought all the accessories but a couple of hundred was better than a couple of thousand.

I have been Ethan's carers earning a Carers ‘wage’ since 2008. It's not a lot of money. I have yet to meet a single soul who would do the work I do for the same amount of money; if a company abused their workers the way the government abuses Carers they would have a huge court case to battle and the outcry would be, rightfully so, very public.

But the Carers of this little island don’t have that kind of support and I am beginning to think because like my sisters, the public think we get everything our children need by filling out a form!!

We can put our names on lists and apply for a lot of things but, in reality, we don’t get them, we don’t even get responses and we are told we are added to the magical never ending never seen list.

There is no shame in telling you I cannot afford that.

But I am certainly not the only one.

We are trying to secure funding to build a small extension for Ethan too; so he can have a safe sensory room to relax in. This is the easy part as the city council will help if the house is suitable for the extension. The HSE however will not help when it comes to the design and equipment needed in this room to ensure Ethan gets the best from this room. An OT will be on hand to show me all the wonderful stuff I can’t afford or that the HSE won’t provide.

Why do you need a room?

The HSE will not give me any home help. They have cut Ethan's services ever since his decline and are even talking about taking away the 10 hours a month of support work we do get.  I cannot even go to the toilet when Ethan is here; imagine if I could leave him in a sensory/safe room for a half an hour to help my middle guy with his homework? To me, that sounds like heaven.

I know plenty of parents who have these exact same issues and lay awake at night wondering how they can afford everything the HSE won’t pay for or help pay for. (I have just mentioned the big stuff, there are lots of little stuff that build up and build up that we, the parents have to buy for our kids with extra needs, such as sippy cups, wipes, special clothing, medication not covered by medical card, special food, drinks, shoes, sensory toys, toys… bearing in mind a lot of families like mine are receiving Carer's allowance as an income, for some families that is their only income.

Parents who have to fundraise.

Parents who have to borrow.

Parents who have to search the Internet late into the night looking for secondhand suitable equipment.

All while still having the worries about their children's health and wellbeing.

So yes, I will go on the lists, I will ask for equipment recommend by the OT for Ethan's room, I will email , I will ring, I will make appointments,  but the reality, my dear sisters and everyone else is; that I am going to have to beg, borrow and pray that I find the cash somewhere because time is something Ethan's condition doesn’t have.

To those of you who thought the HSE gave families like ours everything we need, I hope I've shone a light on the reality of being a carer in Ireland and the absolute abuse of our love for our family members which our government prey heavily on.

Yes, Carers do get a grant once a year, which has been reduced at every budget (of course!) it's called ‘The respite care grant’- it is supposed to go towards a break for the Carers...I’ll let you guys guess where that money really goes!

Would you like to help, us the Carers of this island?

There is a march going on, in every county throughout Ireland, on the 3rd of April. Walk with us! For more information check out the Facebook page ‘March For Our Children’