It is mentioned over and over.
It is put into conversation with doctors, physiologists and specialists – never by us, but by them.
They say it and they wait.
I can feel their eyes on me.
I don’t know what the ‘right’ response is.
I’m pretty sure there isn’t a right response.
There’s a pressure we carry, parents like us. Parents who have to make decisions about the care their child receives.
These decisions are huge.
These decisions are fundamentally ours to make but; we have to listen to what the experts are saying.
These decisions are nothing in comparison to the decisions every parent has to make for their child; and I resent that.
That’s the truth.
I can’t ask my friends for their advice. My own mammy can’t help me with the decisions we are now facing.
Doctors will only tell you facts and give you their medical opinion but the truth is they don’t know either what it is like to have such a burden (and it is a burden, making such decisions) hanging on your shoulders, weighing you down at every opportunity it can.
I know what most will say – you’ve always done right by Ethan and you will make the right decision now – I know that’s a lovely caring thing to say but really it doesn’t help.
The decision still has to be made and today as I read a letter from Ethan’s team the very last line took my breath away.
“We feel Ethan’s ERT has come to a natural end”
I knew that’s what they thought, seeing it in print however, knocked me. It did.
I took out my phone and I looked at all my photos of my Ethan. My tears came fast.
My breath began to labour and through blurry eyes I too, could see that perhaps it was time to give serious consideration to life without ERT.
Even typing that now is hard.
I knew also it was a way for his team to mention it again, as always I am invited up to Dublin at any time to discuss this decision with Ethan’s team.
Ethan is due up at the end of April.
I know the team will mention it again.
They need a decision, I understand that.
How does any parent make a decision to take away a life enhancing drug?
Sadly; I know many families who have had to make that decision and they tell me it’s quality over quantity when it comes to this stage in life with Hunter Syndrome.
I try to listen to them; those who have gone before us on this journey; the real experts.
We knew this was going to be part of our lives as soon as we understood what Hunter Syndrome had planned to do; but for so long, so very long, we hid from it.
We’d look at our Ethan and think ERT is doing great things for him, maybe just maybe he might see a cure in his lifetime…I scold myself as I type that but the reality is we all need hope and hope is what got us this far .
I’ve often been told by many other parents who have kiddies with extra or special needs that on some level I am the lucky one; I don’t have to worry about what will happen to Ethan after I die …to anyone else reading this, I assure you this has never been said in a nasty tasteless manner – I do understand what parents face and in a way I understand why they think this may bring me comfort, but it doesn’t.
It brings me more heartbreak – what will happen to me and our family when Ethan is no longer here and how do we go on?
Why do I have to watch a condition attack not only my son but attack us too, why do I have such horrible decisions to make …why can’t I just plan for his future regardless of his abilities?
No one talks about this side of being a parent to a child with such medical complex needs – the decisions …decisions and decisions.
From his medications right down to placing a peg to help him eat and now his ERT.
I’d like to take a break from it all.
I’d like time to stand still, just for a little while.
But; the harsh reality is a decision has to be made.
Ethan is calmer these days. He’s happier too. He is eating, sleeping and engaging with us too.
Ethan still has violent meltdowns.
We will sit with the experts. I have a detailed diary of how Ethan has been improving lately and somehow, some way we will make a decision, or at least commit to making a decision.
I don’t know what will happen.
But our decision will have Ethan’s quality of life at the centre of it.
Our decision will be all about Ethan and his needs.
And it is Ethan who will help us, in one way or another, to make that decision.
To parents who face these kind of decisions; I want you to know how brave you are.
You are so very brave, probably just as brave as your very special kiddie. I have nothing but respect for you guys x
This was originally published on FireFlyFriends