Ethans diagnosis brought us many, many things.
It brought us joy even in our darkest hours. I know, to most of you, that makes little sense. It was such a long battle to get a diagnosis, that when it came, joy came with it. Not the joy of a new piece of jewellery brings, a deeper more purposeful joy. We had an answer. We had something to fight against. We had a name on the thing that was taking our son bit by bit and finally it wasn’t just us seeing this. It was there in black and white, it was a recognised , it was a very real rare condition,which strangely brought joy.
It brought a different kind of joy too. That joy you all know. But joy over the littlest of things~ Ethan was still talking, even though he was 7, he was in fact using two word sentences~ our new kind of joy.
Obviously the diagnosis brought us plenty of tears, it still does. There are a lot of things we lock away, things we don’t dare say. Things that no parent should ever have to think about. If I’m having a bad ‘MPS’ day, D and I will sit, late at night and talk through everything that scares us. It helps. I don’t ever tell family or friends the truth, it’s just too hard.
We have met many,many wonderful families because of Ethans diagnosis. Families that leave us speechless. Their strength, love and hope always humbles us. Often, older families take us under their wings and show us how to cope, even with all they had on their plates, they took the time to mind us~ we try to pay that forward for any newly diagnosed families here in Ireland. (I am the main contact that the hospital gives to newly diagnosed Hunter Syndrome families.)
We have learned so much from Ethan and the community we were now involved in. Understanding, tolerance, kindness are just a few that spring to mind. There is no book or no amount of googling that can teach you the level of patience we now have! I repeat myself at least 100 times an hour, every day, every week!
I don’t look at report cards, I don’t expect my child to reach a certain grade or standard. I am happy that he coloured all over the letter ‘A’ in three different crayons! I don’t care that he is 12, that picture is going on my fridge beside J’s carefully coloured landscape picture.
We take more pictures than anyone else I know! I make more homemade videos than necessary, well, no no I don’t…I know that one day, sooner than most parents, I will need these memories.
We have learned to laugh from the bottom of our toes to the tip of our heads at the things Ethan does and doesn’t do. He is brilliant at making us laugh along with his ever hyper brother J. We laugh at most things other parents would cringe at. We don’t apologise, if we find it funny we laugh, audience or no audience. That is freedom guys, that is freedom of the soul and it feels great!
We are the parents that will never even notice a tantrum been thrown by your kid in the supermarket. We don’t hear or see it. We have learned to mind our own business! No one knows what kind of day that parent had with the child screaming at them in public. I wish others would understand this!
We cherish the littlest things, Ethan looking at a book, J and Ethan building blocks, (well J building while Ethan knocks them) all five of us watching a movie, jumping with Ethan when he gets excited! Those things matter. They matter a lot to us.
We’ve taken part in a documentary about Ethan , that was an amazing experience, we were raising much needed awareness all over Ireland and Ethan became a well known kid in Galway!
We’ve sat in a crowded room and listened while a presenter described our son and then gave him an award for the courage he has shown before and since his diagnosis .
We have had a pilot announce Ethans arrival onto a plane to Paris, to a round of applause and cheers from a plane full of strangers. Ethan has visited the said pilot in his cockpit !
We’ve gone back and forward to England in the hope of a new drugs trail, sadly it was not for Ethan but the trial is very successful.
We are whiteness to the kindness of strangers and the importance of it. We’ve seen the other side of that coin too.
We had no idea we would face all this, but here’s the truth, we are happy. We know love.