A child losing their parents is an orphan.

A husband losing his wife, is a widower.

A wife losing her husband, is a widow.

There is no name for us, bereaved parents. Perhaps such is the extend to which the world sees this scenario as unnatural, that it never bothered to come up with a name for it.

When a child is born, there is joy, cards, presents, people visiting. You get maternity leave to bond with this tiny person. In some countries, dads also get the chance to stay home and spend much important time with their children.

When a child dies, there are no words. Nobody knows what to say. Everybody feels sad and awful. The bereaved parents are supported through the wake and funeral process. There is no allowance for compassionate leave beyond the usual 3 days. Parents are dependent on the good-will of their employers and some will have positive experiences while others feel rushed back to work before they are ready. Of course, how could anyone put a time frame on the loss of a child? But some clause, some minimum (up to a month and beyond at the discretion of the employer), would not go amiss.

Then, within a certain amount of time, people not directly involved with the bereaved parents move on. They carry on with their lives. Of course they do. Perhaps, in ways, they want to put this awful thing behind them and hope they'll never have to deal with the like of it ever again.

It is then that they might not be able to cope with the parents who continue to struggle with coming to terms with their loss. They may not realise that this is something that these parents will never get over or move on from. To those parents, it is a new reality. They will carry this with them into their graves. Of course, in time they learn to live with it a little better than at the start but with them it will stay.

Some may find it tough to have this constant reminder of something so fundamentally sad.

On the journey through grief, the bereaved parents may find people who used to be close becoming more distant and strangers becoming new found friends.

We have been lucky. We have retained all people dear to us and gained some new friends.

Our world has changed. We seem to be surrounded by worst case scenarios which makes it hard to cope with times when Eoghan is sick. It could be a simple virus...but what guarantee is there that by some fluke it won't kill him?

When Eoghan is ill, I've been scared to go to sleep in case something happened to him while I slept. 

I guess, this too is something we will get used to.

While we miss our little man every day, our lives are still very rich.

He may not be here but:

There is sheep roaming the Kerry mountains carrying his name.

He's had trees planted and balloons released for him in almost all four corners of the world.

He's had a star named after him.

He has a patch on the latest SUDC patch work quilt. 

Pretty good going, I think.

XXX

Another Anniversary

It is now almost 3 years and this is going to be a frank one:

Since that day in January 2011, our lives have become so different...with a different outlook, priorities and challenges. Eoghan's arrival has helped us along this journey into the unknown. While our innocence is gone forever, he has helped us re-build our confidence as parents...that still being a work in progress though. The pain has not lessened but has changed. 

In the last 3 years, amid many good and happy days, I have done a lot of missing, hurting, feeling low and depressed. There has been one occasion when I felt so numb that I wanted to and have self-harmed to see if the physical pain would help get alleviate the emotional. (It does not.) There have been times when I thought that surely the world might just be better off without me. Moments when I thought that I am no use to Pat or Eoghan in this state of sadness.

Before anyone gets panicky, suicide isn't and never has been an option for me. These musings and thoughts are just the sometimes harsh reality of grieving - for me.

I want to grow old with Pat and see Eoghan turn into a teenager and adult, making his own way in the world. I want to see him get married and have a family of his own. I want to live life. It is precious and we never know when our time is up. I know I am needed here and want to spend my time with the people that mean so much to me. Despite bouts of feeling very low, I have always felt very much aware of how much pain and hurt that kind of a decision on my part would burden onto Pat, Eoghan and my family and friends.*

In time, us bereaved parents may look and act normal but trust me, underneath it all, we are not the same...How could you remain the same after something like this? There is a tear threatening behind that smile and a longing to be normal again; for it all to just unhappen. 

Standing at his grave still feels as surreal now as it did then. Triggers are diverse. Christmasses, Anniversaries, Birthdays can be hard days that are expected to be so. Then there are those days on which you get hit by an unmerciful wave of miss for no apparent reason…Perhaps, when you look at your subsequent son and briefly think of how different things should be. Then there are flashbacks or the realisation that his smell is slowly fading from his comfort blanky and that memories of him and his brother as babies begin to bleed into one. You are scared you will forget, that the world will forget.

For anyone wondering how we “do it" or “get through it”?

Because we have to. Life pulls us along. The earth keeps turning, whether we like it or not. You keep going because you have to and because you begin to want to again, too . You go back to work. Life demands and wants to be lived.

There is a heartache that is always within, lingering in the depths of your being. Over time, it becomes familiar and we somehow learnt to live with its presence. It is the bitter for every single one of those many sweet thing in our life.


Miss you and love you always and forever, my darling.
Xxx

*My heart goes out to those who lose that last shred of hope and whose souls are in so much despair that leaving this life becomes the only option they see. I realise those feelings of theirs are very much real and very painful. I wish they could see that there always is a new day. These feelings will pass.
But this act, once done, is not something that can be undone. Many many more lives are shattered as a result. Whether they realise it or not, they will be missed. Dearly.

It makes me so very sad to think that someone could be in that much pain and feel that alone. I wish that we, as a society, were more in tune with those peoples sometimes subtle requests for our help. It is very hard to bear these inner most feelings and thoughts to even the closest of friends or family. 

A New Year

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