She is part of Ethan's care team.
She always asks me one question “How are you coping?” And for some reason I tell her the truth.
It’s a much harder question to answer lately and I lie a lot.
That’s the truth. I lie every time someone asks me that question but with her I just blurt out how I am ‘coping’ that day, that minute or that hour.
I thought I was accepting of our future but it turns out, no matter how much I thought I was prepared...I am just clinging onto the cliff's edge with bitten down fingernails; trust me that isn't easy, but I've no choice.
There isn’t a team of support waiting for me or my family.
There isn’t even a bit of home help- zilch, nada, none.
What is home help? Well, I am unsure.
From what I’ve read by other parents, it’s when a professional,( nurse or carer) comes into my home and helps me- helps me care for Ethan, so I can cook a dinner safely, so I can engage with my two younger sons, so I can go to the toilet; yes folks, it is that hard right now, that I have to trust my 11 year old to watch Ethan so I can use the toilet.
As for respite; well whoever makes decisions regarding that little bit of support should really come visit me and my three kids on an average afternoon and sit down and explain to me why a child whose needs increase as his syndrome progresses gets less and less respite - I would really love the opportunity to have a chat about that with the minister for health or whoever the heck it is that makes these ridiculous decisions!
Those who work with Ethan know that I value them and that I have nothing but respect for them but the system is flawed.
The system they are forced to work with and the system I am forced to rely on. It is so horribly flawed that I cannot sit by and say nothing about it.
I am not just talking about respite here, I mean the whole HSE system designed to help families like ours - designed by who?
I don’t know. I have absolutely no clue who designed this system but I am pretty sure not one family raising a child with any form of a disability were asked for their input.
For example; I know of many families who have fantastic supports, whose children get day services, respite , home help and the therapies they need - I know these families need this.
I know first hand how much, but what I don’t understand is why our government don’t give the same if not more supports to families like mine.
Families that have to sit back and watch a condition ravish their child and attack their whole family bit by bit until we become so broken and worn down by the system that depression is the most common outcome, along with divorce, not to mention what it will do to our other children as they watch their sibling wither away.
Where is our support? Where is our help?
Are we, the mere parents, who are simply human, expected to deal with the slow death of a child and all the emotional trauma our other children will no doubt have, then try to look after our broken hearts while ‘coping’ with bills, shopping, schools, housework...life!
Without any support from a government who heavily relies on the strength of a parent's love to keep us caring and in turn saves the state a small fortune while they pay us pittance and even tax us on it?!
Ethan is changing. Doctors have no idea how to help.
We are in limbo and we are praying for a little light to shine down on him just so we can see him smile and laugh again. It has been the worst few months of our life.
We have to believe that along with his team of doctors and specialist that we can find that goddamn light . We are hopeful that Ethan will stabilise again.
What I have learned over the past few months is that there isn’t help or support ready and available to families like ours. There just isn’t. We’ve to ‘cope’.
There are however, waiting lists.
Waiting lists and some more waiting lists.
There are budget issues too as always and of course staffing issues.
When you’re a parent like me, one that has no choice but to ‘cope’ , we really don’t give a fiddlers about lists and budgets ...we know we are worth our weight in gold to our government's budget , we know how much we save the state...
Bitterness is something that can eat me up; sometimes I let it, other times I do my best to push it aside.
Parents like me are living a life no parent should ever have to ; yet we are forced to fight for what our children and our families need in order to help us ‘cope’ - our lives are harder than the average families that is a fact; shouldn’t getting help be something that just comes when the words ‘terminal ill’ appear on any form? (of the millions we’ve to fill out!)
I haven’t got the time or energy to feel all this bitterness, but here I am writing about how bitter not just Hunter Syndrome has made me (it’s definitely played its part) but how our government has ensured I feel bitter.
We are used and abused by their idea of services and supports - no one has asked families like mine “what is it the government should be doing?”.
They seem to forget that they are our babies, not someone we ‘care’ for, we didn’t chose this, we are not trained in any way shape or form, but we are here doing all this because they are our babies- they are our lives all we need is some accessible services, practical help and support for us, our other children and for our child who is fighting daily to smile.
A lot has changed but yet here I am still talking about the shite that doesn’t ever change despite your circumstances.
Our government need to do better.
Our government need to acknowledge the different types of Carers on this small island.