You began (like most of my years since I became a parent) with an early start and a clear head.
You brought me some form of hope; but I was also frightened of you because you reminded me that time moves forward.
Having a child with a progressive terminal illness; I never look forward to a new year, but I do try to enter it with hope, because really that’s all any of us have.
You started well enough 2016, for that I thank you.
By mid March, however, I could see that Ethan’s medications were not doing what they were supposed to be doing — keeping him calm, happy and free from fits of rage.
2016, you gave us our fourteenth year with Ethan, I am supposed to be grateful for that, but 2016, I want all the other years to give me that much too, at the very least.
You did bring us some right old belly laughs – like in the Summer when Ethan roared ‘fug way’ (more commonly known as fu*k off) to a bunch of people staring at him; this was behaviour we hadn’t seen since 2015, so 2016, thank you for that – we really did laugh.
You, 2016, taught us never to book a holiday with a booking agency ever again – we lost all our holiday money on a trip away because the company went bust – you may remember that ‘low cost holiday’ debacle (if not here’s what happened to us) oh well, eh?
It could have been worse and 2016, I really feel you thought that saying was a challenge.
You showed us how little money actually means; that losing money, really wasn’t that bad.
I guess I should thank you for that perspective, eh?
Your idea of Summer was on one hand great fun, where we went out and about like any other family.
Ethan was in great form and he was happy.
But, you brought a cloud when we were told Ethan’s swallow was deteriorating and that he could no longer have the one thing in this world he ‘bloves’ – ice cream.
We handled it like pros though ; we accepted it and began adding more ‘thickener’ to Ethan’s drinks and thanked the powers that be, that Ethan was still able to eat by mouth.
You taught us to look for that sliver of sunshine and to grab it and focus on it.
We did that and I have to say we did it rather well.
We didn’t stop to think of a ‘decline’ in Ethan’s abilities, instead we focused on his current abilities.
You 2016, also introduced us to the need for a wheelchair; again we decided the silver lining in this was that now Ethan could enjoy family days out in comfort.
We knew Hunter syndrome was taking more away from Ethan; but he was still happy and as naive as that sounds, that is what we clung on to.
By Winter 2016, you decided you’d teach us some more lessons regardless of what we had already learned over the previous 10 months.
You taught us that life, no matter how much you think you can prepare for; sometimes just goes so haywire that by the time you get your head and heart back into some form of working order, you don’t recognise the little boy from the Summer.
You taught us that progressive illness isn’t something that we can hide away from; that it isn’t something that only happens way way way in the future, you taught us that it’s here and it isn’t going to get better.
2016 you took some amazing people from this planet during your reign – no not celebrities – children, little children who lived every day fighting for their next; while their parents had no choice but to stand by and watch – because there aren’t enough funds to research into a rare disease such as hunter syndrome, to help find a cure.
You 2016, have been a roller coaster year – you have shown us how bloody amazing people are, how much they care about our little boy but you’ve also shown us the heartbreaking reality of hunter syndrome.
You ended with an appointment for a tube to be fitted into Ethan’s tummy; but you also made us aware that this is something like a wheelchair, our boy needs it and it is an aid to help him – you’ve taken the worry of his weight off my shoulders.
You 2016, made me wonder if this was my son’s last Christmas and I find that unforgivable – I am relieved you are over.
I did heed your lessons and I still entered 2017 with a clear head (obviously – three kids ensures that!) but also with hope.
2017 you have started better than I had anticipated, Ethan has smiled a few times and even laughed – thanks to one Homer J Simpson!
2017, if you are reading this, families like ours need you to be more decent to us, we go through enough emotional sh*t that seeing our children smile and be happy is all we really want – cut us all some slack, eh?
From Ethan’s mammy
This was originally published on FireflyFriends