It is the start of another year. The days are slowly getting longer again. Soon, winter will give
way to another spring, then another summer. And so times goes by.
For now the objective is to make it through January. Day by day. Hour by hour, if necessary. I find my concentration and ability to deal with what I would now probably consider small, irrelevant and meaningless drivel, is at an all time low during this time. It can be very hard to get myself to care about certain things when my mind is elsewhere; still trying to figure out:
Did this really happen?
How the hell did this happen?
We don't know. We probably won't ever know.
Back in Nov 2012 I had my DNA taken for testing following a slightly abnormal ECG reading during our check-up at the CRY centre in Tallaght. The slight abnormality pointed into the general direction of Long QT without saying I actually really do have it. From what I understand, it could be a case of me being a carrier of this disorder and/or being asymptomatic for now.
My DNA was checked for abnormalities on the genes that are usually associated with Long QT.
Everything turned out to be in prefect order. No mutations, missing bits or other funny stuff.
Or something like that...Still waiting for the final report.
For now the bottomline is that they found nothing out of the ordinary.
However, they cautioned that they only checked the currently known genes associated with Long QT. There may be others that have not yet been discovered. Therefore, they recommend that we continue to be checked and monitored.
I could still turn out to be a carrier for Long QT.
Patrick could have had it, unbeknownst to us.
Or another undetected heart condition.
I really really wish that two things were done routinely in this country because thinking it might have been something that was preventable is what would probably upset me the most:
1. Check every newborn for common heart conditions at birth and make this a routine check during their health check-ups growing up. Perhaps at birth, age 2, 5, 10, 15 if nothing odd shows up and closer monitoring if there are question marks. Then, work with those parents whose kids do have a diagnosis. Educate them in what their kids can and cannot do in terms of sports and physical activity...You really do not want to be raising couch potatoes because the parents are too worried to let them run around.
2. If there is a sudden and unexplained death in children over the age of 1, please, please start taken DNA samples for testing. Even if it seems unwarranted for whatever reason at the time: Better to be looking at it than to be looking for it!
And so here we are again: a new year, a new January. New possibilities, challenges, ups and downs. Another anniversary and birthday to come.
This year, Patrick should be turning 5. He should be looking forward to school in September. I am sure he would come home every day teaching Eoghan whatever he learnt in school. I am sure Eoghan would be jealous of him getting on the big boy school bus.
All we have now are our memories and our minds picture of what could have been.
Sometimes, that does not feel enough.
Sometimes, the hurt and the miss are as big as the day it happened.
Eoghan is our bit of sunshine on those days...always managing to make us smile and laugh. Always willing to give us a hug...the biggest ones usually during drop off time at the creche in the morning when, at times, you'd need a crowbar to pry him off us.
Eoghan is teaching us that unconditional love can survive such a massive heartache and breathe new life into broken souls. It amazes me how sometimes you can feel such despair and such love all the same time...How these very different emotions can co-exist.
It makes you appreciate what you have while sometimes making you scared about losing it all over again. It makes you want to hold on to all the important things in life...The things that matter.
So, we don't know where our journey will bring us to or what is around the corner for us. All we can do is choose what is important to us and appreciate the small things in our life. We all only get one chance ... it is up to us to make it count.
"Wake Me Up" - Avicii
Feeling my way through the darkness
Guided by a beating heart
I can't tell where the journey will end
But I know where to start
