But then you wander upstairs to bed, see this and you are reminded while it is worth pushing through the dark days:

And there are many other things, too...The people who stay with you through your anti-social days, the husband (who must surely be a saint), the good days, a lovely song, a walk, a good night out with friends.

Just can be difficult to see them sometimes.

This is going to be a short one

I guess sometimes, you feel like you are just existing and no longer living. And you get very good at pretending...Extremely good, in fact.

"How are you?"
"Grand, sure" ,comes the response without even thinking. Rattled off like a poem you learned for school.

They should have some sort of academy awards for us. They really should.

When you lose a loved one, life has that awful tendency to just keep on going as if nothing ever happened. And it somehow expects you to keep up...to continue functioning as you have done "before". What is it with that?

The sun rises (for Ireland read: it gets brighter-ish), the sun sets (it gets dark-er). The bills keep coming in. Events and holidays come and go......Just like nothing ever happened.

Your own body's even in on this and betrays you in the most subtle ways:
Your stomach keeps rumbling when you are hungry.
You catch yourself laughing at something funny...though you wonder how just a split second later.

So, life just pulls you along. You continue to get up, go to work, do the jobs around the house, go shopping, go out. And over time, you get pretty good at keeping up with it. You get good at pretending life is "normal" when it is anything but. Sometimes, you need that...this make-belief that everything is grand.

Sometimes though, there are times when life potters on ahead and you (allow yourself to?) get left behind. Those are the times when you realise yes, this actually did happen. You do not want to have to pretend to care about the shopping, the bills, the daily grind...
The sense of loss, sadness and despair seem to overwhelm to the extent that you just want to hide yourself away from the world.

Those times are tough because eventually you realise that you do have to try and catch up with your life which just seems to carry on at lightening speed. And sometimes, you are not sure you want to. You wonder what is the point of it all when so much of what was good about your life just vanished within a heartbeat.

Can we take for granted that we will get to see Eoghan reach his milestones? Will we get this graduation from Montessori? The first day of school? Leaving Cert, College all those things that we should have had with Patrick?

I guess we can only wait and see and take each day at a time. Some days, that is harder than other days though.

Testing Testing Testing

Following Dr. Krous' advice at the time, we had made contact with CRY, Cardiac Risk in the Young, an Irish charity that helps screen family members of people who died suddenly to help diagnose/rule out any possible conditions that might have caused that sudden death. Their screening centre is Dublin based and so that is where we went Tuesday, August 21.

All three of us underwent a number of tests. ECG, ultrasound scan of the heart, 24 hour ECG and both the husband and myself were put through a stress test also. They stopped short of putting the baby on the treadmill too :). The staff were wonderful and kind and made the whole experience a lot less daunting than it could have been.

I must say, I was nervous going up. I guess, we both sort of played the "What if it was something I gave him?!" game in our heads.

On the day, both boys checked out ok (pending the 24hour ECG results). All seems normal and working as it should. They will want to see Eoghan back next year for a follow up...but that is all routine. Phew! Seemingly, my own ECG showed some borderline results that would be perfectly alright under most circumstances but given Patrick's sudden, unexplained death, they would prefer to do some more testing.

So...in a few weeks time I might make another trip up to discuss genetic testing to investigate further along the lines of Long QT or something similar. It is a simple blood test and I am pretty sure we will go ahead with that. At best, it will show up clear. At worst it will flag anything genetic that might be lurking and help get others in the family checked out.

I am trying to think what a possible diagnosis would mean to me. How would it make me feel.

Guilty? Because I might have given something to Patrick?
Sad? Because his death might have been prevented, had we been tested before?
Angry? Because they should make cardiac screening a standard test for all newborn babies?

I am not sure. The possibility of it all makes my heart feel very heavy at times. And it makes me frustrated...Because:

When we decided that starting a family is what we wanted to do, I did make that appointment with one of our then GP's (moved GP's when Patrick was 6 months old). I did ask what I needed to do (i.e. folic acid etc) and I did specifically ask whether there are any tests we could undergo to ensure we are both OK; that we would not pass anything to our child. Because, who knows? Separately we might be perfectly ok but our combined gene pools could produce some sort of ticking time bomb.

And what do ya know?!!?

The reaction?: What for? If everyone thought like that, nobody would have kids. If there is nothing obvious on either side...

You know, sometimes I wish some members of the medical profession would not just dismiss Joe Bloggs' worries as that of an overanxious parent/person/soon-to-be-parent/person who does not have a clue. I wish we were taken seriously in all our worries.

Fine...say that in their medical opinion there is probably no need for any testing given the good health of both parties and the absence of anything obvious. But do offer us the possibility to pursue this, if we so wish. Do not make us feel silly for bringing it up.

Either way, it will not change what already happened but if it did turn out to be something that we could have detected and possibly even prevented had we known about it, that would make his death seem that bit more senseless. I think, I would find that hard to come to terms with.

I guess, we will have to wait and see. Regardless, I do feel all children should get routinely tested for hidden cardiac conditions. The right support needs to be given to those who do get one diagnosis or another...Maybe in a perfect world...

Finally, we are very grateful to CRY for screening us and all the other families out there. The importance of their work is immeasurable.