I sit with him most days trying to get a smile, a smirk or even a little kiss.
He’s a far cry from the affectionate little boy he once was.
There was a time not too long ago that he would climb all over me slobbering his ever-wet lips onto my face, eyes, ears and even my head.
He loved to be loved.
These days are different.
These days are darker.
He’s there for moments at a time.
Back in 2008, I believed that the doctors could have been wrong. They may have had the syndrome right but there was no way my little hyper, energy filled, affectionate boy could ever lose the ability to walk, eat, talk or understand.
Sadly, they were right.
I think back to that day and how I believed that it was the worst day of our lives but now, these days, I don’t see that day as the worst, it was simply just the start.
The five year and ten-month battle to find out what was different about my little boy had come to an end that day.
Answers were given.
Answers which fuelled more questions.
Answers we could never have predicted to come our way on that wet day in March.
Yes, we were given answers but we were left with more questions than a wide-eyed toddler learning about the world.
Diagnosis Day for us now, is something like an anniversary.
Every March we recall the same story only lately, over these past few ‘Marches’ we recall Ethan. We recall the little boy pretending to be a plane, oblivious to the heartbreak now surrounding him. We recall him climbing onto my lap and telling me “It will be okay mammy”.
We recall him asking for ‘Supermacs’ because he was a good boy at the hospital. We laugh when we recall him telling his uncle to ‘relax’ as my brother wanted to cuddle and hold him tight upon hearing the news.
We no longer just focus on the heartbreak when the doctor used the words “Go home and love him, for you won’t have him for long”
The heartbreak from that day, and those words has shifted, allowing us to recall more parts of that day, a day when Ethan was still very much Ethan.
As odd, as it may sound, I’m thankful to be able to recall the day outside of the doctor’s dusty brown office.
We’ve a different kind of heartbreak and one that no one really wants to talk about.
We now have the heartbreak of remembering the same child and what he was like back in 2008, 2009, 2010…
We have been grieving him.
Grieving him even though he is here.
His body refuses to let him run wild like he used to.
His mind insists on taking all his words and memories away.
His mouth won’t allow him to eat his favourite foods and his hands no longer can make the jigsaws he once loved.
I’ll be honest; I used to dwell on our Diagnosis story.
I let it define how our world was ripped wide open and our hearts were left without protection and to a certain degree that’s still how I feel but…
Time changes your perspective.
A progressive illness changes your perspective, almost daily.
Our world has changed and been modified more times than you’ve had a hangover.
We’ve stepped into every corner of ‘Special needs.
We know what it’s like to have a child who just won’t sit still or says the most inappropriate things ever.
We are the parents of that child in school that has no friends or hits everyone he meets.
We are the same parents considering a hoist and track.
We now know all about peg feeding, bum changing, special Beds… Special fecking everything.
If I could go back to our diagnosis day, I would have looked after me too.
I would have asked for help in processing such news.
I wouldn’t have said “I’m fine”
I don’t think I could have changed the tears that were shed and still fall but I would have been more open about how ‘we’ were doing.
I would have not been focused on future Ethan. I would have tried to control my thoughts that bit better and stayed in the present with Ethan.
Hindsight is indeed a great perspective maker too.
That brings me to the present.
As I type this Ethan is screaming. (Our home help H, is trying her best to engage with him)
Ethan screams almost daily now. We are still asking questions but answers are not so forth coming.
What ‘they’ do think, is that he screams because he can or as a way to communicate pain, hunger, happiness, dirty nappy…
I use mindfulness to keep me here, in the present.
Being here, no matter how hard or sad, is important.
I want to be present for Ethan even if he is struggling.
I want to remember it all.
I want to recall the good, bad, sad, hard …isn’t that a life?
I want to remember Ethan’s life, struggles and all.
Yes, we grieve a child who still is with us and I suppose that for me, is far worse than our diagnosis day.
My advice for your own diagnosis day, try not to forget there are many days after, mind you too.
This was originally published over on Firefly