I have long since felt an indifference towards New Year's eve though I am not entirely sure why. I've always felt a bit down and mopey on the night.
Now, I am afraid I am beginning to habour similar feelings towards Christmas. I did get into the festive mood on occasion but largely I have found it to be more of a chore this year...finding gifts, wrapping gifts, the usual things you are supposed to do at this time of the year...My heart just was not in it.
This is our second Christmas without Patrick and it has been much tougher than the first. Perhaps having Eoghan helped soften that blow of facing special occasions like this without Patrick last year.
But as cute as he is, Eoghan was never going to be able to shield me from this forever.
Truth be known, I ve been miserable. And feeling very guilty about it, too.
Because I know we have a lot to be grateful for. Thankfully, I am still able to see that. I am glad that the cat turned up eventually. As we got him just as we were expecting Patrick, and because we have seen him bond with Patrick and not leave the room the night of the wake, we are extremely, extremely attached to Tipoki.
So I know I should concentrate on those small things but sometimes it is not as easy to just go and do what you know you should.
It has been difficult for me to figure out how to best include Patrick in the festivities because I would hate for him to be slipping from peoples minds especially at this time. There are things we do already, like our family photo decorations on the tree and visiting the grave Christmas Day. But somehow I feel this is not enough and he deserves more.
As one of my very thoughtful friends pointed out, there are so many gifts being given...Patrick should have one too and placed on his grave. So maybe we should get him a small gift every year. And make sure Santa brings one to Eoghan from Patrick, too so that, while they were not allowed grow up with each other, a bond of sorts will be forged...
I am sure we will find our way on this path yet but it is proving bloody difficult.
:/
They say the second year is much harder than the first. Boy, do I hope that is true.
Saturday 29 December 2012
Saturday 15 December 2012
For almost as long as I have been living here, Christmas eve has always meant pretty much the same thing: Midnight mass, singing, drinks, bed. It had become a lovely tradition that, when Patrick was born took on another, even more important meaning.
When Patrick arrived, it re-ignited that magic about Christmas that I remembered from being a child. In my mind, this was one tradition we'd always follow. Me heading over to practice on a Christmas eve, Pat getting the kid(s) ready and bringing them over later. A bit of mingling and chatting before we'd head home to open one present each and then into bed.
It was supposed to be our little family thing that we do Christmas eve. And when I say family thing, I include the people we meet at Midnight mass because they have been become my family here.
As we now know, life had other plans. Two Christmasses was all we were allowed to spend with Patrick. We are grateful that we have Eoghan but Christmas is still a very difficult time. The run up to Christmas is one big rollercoaster of ups and downs.
From the excitement of getting the place ready for Eoghan, buying gifts, having that "aha!" moment when you finally find that special something for someone to missing Patrick especially at this time. It's become even more important to me to hang on to these little traditions. While, due to a variety of reasons, we may not always get to do the very same thing, I am hoping some aspects of the Christmas eve schedule will remain.
But life is busy and ever changing. New traditions will make their way into our life. Who knows what those may be but I guess they will reveal themselves eventually.
Until then, we can only take one step at a time and I should probably apologise in advance for being happy, sad, cranky, irrational, cheerful and mopey....all at the same time.
When Patrick arrived, it re-ignited that magic about Christmas that I remembered from being a child. In my mind, this was one tradition we'd always follow. Me heading over to practice on a Christmas eve, Pat getting the kid(s) ready and bringing them over later. A bit of mingling and chatting before we'd head home to open one present each and then into bed.
It was supposed to be our little family thing that we do Christmas eve. And when I say family thing, I include the people we meet at Midnight mass because they have been become my family here.
As we now know, life had other plans. Two Christmasses was all we were allowed to spend with Patrick. We are grateful that we have Eoghan but Christmas is still a very difficult time. The run up to Christmas is one big rollercoaster of ups and downs.
From the excitement of getting the place ready for Eoghan, buying gifts, having that "aha!" moment when you finally find that special something for someone to missing Patrick especially at this time. It's become even more important to me to hang on to these little traditions. While, due to a variety of reasons, we may not always get to do the very same thing, I am hoping some aspects of the Christmas eve schedule will remain.
But life is busy and ever changing. New traditions will make their way into our life. Who knows what those may be but I guess they will reveal themselves eventually.
Until then, we can only take one step at a time and I should probably apologise in advance for being happy, sad, cranky, irrational, cheerful and mopey....all at the same time.
Friday 23 November 2012
Odd Firsts
There, I did it. Yesterday, I dived behind the couch (the one that migrates into the bay window every winter to free the radiator so it may warm the place more efficiently) and extracted Sproggy's portable DVD player.
The one that had, until then, been resting unused since the eve of the day he died.
The one which had not been touched since his little fingers pawed it last.
I brought into the kitchen to plug it into the mains and see was it still working.
The screen (still hanging at an angle after having come loose under Sproggy's rough and tumble care) remained black....until it dawned on me that I may have to flip the switch on the socket.
Finally it sprang to life and brought up the last image Sproggy would have laid his big blue eyes on.
All the while Skippy was eyeing me from his booster seat - suspiciously and expectantly at the same time. He burst into a loud giggle when the DVD started in earnest and the first "Shaun The Sheep" theme music came on. His little head bopped at random intervals as he remained glued to the episode.
An odd first. One that sort of feels like a big deal to me. But maybe that is just me.
The one that had, until then, been resting unused since the eve of the day he died.
The one which had not been touched since his little fingers pawed it last.
I brought into the kitchen to plug it into the mains and see was it still working.
The screen (still hanging at an angle after having come loose under Sproggy's rough and tumble care) remained black....until it dawned on me that I may have to flip the switch on the socket.
Finally it sprang to life and brought up the last image Sproggy would have laid his big blue eyes on.
All the while Skippy was eyeing me from his booster seat - suspiciously and expectantly at the same time. He burst into a loud giggle when the DVD started in earnest and the first "Shaun The Sheep" theme music came on. His little head bopped at random intervals as he remained glued to the episode.
An odd first. One that sort of feels like a big deal to me. But maybe that is just me.
Friday 16 November 2012
Sproggy-nox
It has arrived. The day that Sproggy is gone from us exactly the same length of time as he was with us for.
It is a strange feeling. So much time has passed, yet it seems like only yesterday that I made that journey home from Berlin. Sometimes you barely remember what life was like with him around or that he even was part of our life at all. The way life just keeps going, it sometimes feels as if his absence bears no significance to life at all...
Though it matters to us. Little reminders every day. A glimpse of his picture in the house...or, as of late, down in the creche where Patrick's wall is still as adorable as ever.
As of tomorrow, he will be gone longer than he was with us for. Time keeps ticking away and sometimes you wish it would stop, or rewind itself.
But..that cannot be. Life keeps going and all we can do is keep his memory alive by thinking of him, speaking his name and knowing he is watching out for us all.
Miss you loads my little man!
It is a strange feeling. So much time has passed, yet it seems like only yesterday that I made that journey home from Berlin. Sometimes you barely remember what life was like with him around or that he even was part of our life at all. The way life just keeps going, it sometimes feels as if his absence bears no significance to life at all...
Though it matters to us. Little reminders every day. A glimpse of his picture in the house...or, as of late, down in the creche where Patrick's wall is still as adorable as ever.
As of tomorrow, he will be gone longer than he was with us for. Time keeps ticking away and sometimes you wish it would stop, or rewind itself.
But..that cannot be. Life keeps going and all we can do is keep his memory alive by thinking of him, speaking his name and knowing he is watching out for us all.
Miss you loads my little man!
Thursday 25 October 2012
The Rat Race
So, how has the return to the rat race been?
It's been 3 weeks since I rejoined the work force after pretty much a full year off. While I was absolutely dreading it, it actually has not been bad.
The mind is kept busy. You are in a mad routine and whereas of late I had perhaps too much time to ponder things which got me way down, I feel more balanced now. ... Tired out though. It takes time to get used to that level of business again...and having to be super organised.
What I said before about Patrick's death always being with me, still stands. It is and always will be but what I guess I mean is that there are times that trigger memories, feelings, images - very unpleasant ones. That does not mean though that this stays with you for hours...they might be just split seconds where you get a pang of sadness and then you carry on what you were doing.
What triggers this can be anything, something nice like a big flock of birds or something gut wrenching like an ambulance speeding past or news like those at the weekend when two little girls died while walking with their dad.You are reminded then of your own history and your heart breaks for them because you know what they are going through.
Really, going to work has forced my mind to stay busy and prevented it from wandering to dark places in my mind. That is a good thing.
It was a busy first week which ended in me doing the 8K Limerick Mini Marathon in UL. I am proud to say that I ran it in 50 mins and 15 secs. Never thought I would ever be a runner. When I took it up and struggled to keep going at times, I would tell myself that if Patrick could die all by himself, it should be a doddle for me to push on another half kilometer. That is how I gradually pushed on further and further.
Thanks Sproggy...looking forward to your help with next years Great Limerick Run.
Love ya lots!!!
It's been 3 weeks since I rejoined the work force after pretty much a full year off. While I was absolutely dreading it, it actually has not been bad.
The mind is kept busy. You are in a mad routine and whereas of late I had perhaps too much time to ponder things which got me way down, I feel more balanced now. ... Tired out though. It takes time to get used to that level of business again...and having to be super organised.
What I said before about Patrick's death always being with me, still stands. It is and always will be but what I guess I mean is that there are times that trigger memories, feelings, images - very unpleasant ones. That does not mean though that this stays with you for hours...they might be just split seconds where you get a pang of sadness and then you carry on what you were doing.
What triggers this can be anything, something nice like a big flock of birds or something gut wrenching like an ambulance speeding past or news like those at the weekend when two little girls died while walking with their dad.You are reminded then of your own history and your heart breaks for them because you know what they are going through.
Really, going to work has forced my mind to stay busy and prevented it from wandering to dark places in my mind. That is a good thing.
It was a busy first week which ended in me doing the 8K Limerick Mini Marathon in UL. I am proud to say that I ran it in 50 mins and 15 secs. Never thought I would ever be a runner. When I took it up and struggled to keep going at times, I would tell myself that if Patrick could die all by himself, it should be a doddle for me to push on another half kilometer. That is how I gradually pushed on further and further.
Thanks Sproggy...looking forward to your help with next years Great Limerick Run.
Love ya lots!!!
Thursday 11 October 2012
The Sproggy-nox...
The day that Patrick will have been gone as long as he was with us for. Frightening to think that this will happen so soon. November 16th is the day.
It will be almost 2 years since he died then.
Still: It does not feel real; even at this stage. It seems so long since I last held him, yet time has flown. I still have not really figured out who I am anymore; I only know I am not the same.
On the surface, I function well enough. I get up. Things get done. As of this week once more, I go to work. I took up running. I look well, I am told. Well...tis a good distraction to what's going on inside, isn't it? You get on with life, because you have to. As someone once said, you put on your face as you go out the door and just get on with it.
But underneath that, Patrick is always in my thoughts. Many times throughout the day I ask myself if it really did happen and if so, how? Sometimes, I wonder was he even ever here because it seems so long. There are flashbacks to that day, that realisation I had in Berlin that my son was dying or more probably already dead. I relive that panic at some point or another most days. Every time an ambulance races past me on my walk, I freeze and imagine Patrick in it with the paramedics frantically working to save him.
That is what the last almost 2 years have been like for me. This is my new normal. Amidst the good times, the laughter, Eoghan and other blessings, there is always that...and it will never go away. Sometimes, it gets the better of me and it gets too much.
Of late, I had really been struggling. Perhaps unsurprisingly, work is proving a distraction. A welcome one at that. Less time for the mind to ponder and wander to dark places. Still feeling somewhat fragile and teetering near enough to the edge at times though. But as they say, there is no getting over, under or around grief....you can only go through it. Put on your outdoor face and take on each day as best as you can...because I feel I owe it to Sproggy to make the best of life. We do only get this one shot at it and as much as it sucks at times, I need to live for the things that we can be grateful for...And there are so many.
xxx
It will be almost 2 years since he died then.
Still: It does not feel real; even at this stage. It seems so long since I last held him, yet time has flown. I still have not really figured out who I am anymore; I only know I am not the same.
On the surface, I function well enough. I get up. Things get done. As of this week once more, I go to work. I took up running. I look well, I am told. Well...tis a good distraction to what's going on inside, isn't it? You get on with life, because you have to. As someone once said, you put on your face as you go out the door and just get on with it.
But underneath that, Patrick is always in my thoughts. Many times throughout the day I ask myself if it really did happen and if so, how? Sometimes, I wonder was he even ever here because it seems so long. There are flashbacks to that day, that realisation I had in Berlin that my son was dying or more probably already dead. I relive that panic at some point or another most days. Every time an ambulance races past me on my walk, I freeze and imagine Patrick in it with the paramedics frantically working to save him.
That is what the last almost 2 years have been like for me. This is my new normal. Amidst the good times, the laughter, Eoghan and other blessings, there is always that...and it will never go away. Sometimes, it gets the better of me and it gets too much.
Of late, I had really been struggling. Perhaps unsurprisingly, work is proving a distraction. A welcome one at that. Less time for the mind to ponder and wander to dark places. Still feeling somewhat fragile and teetering near enough to the edge at times though. But as they say, there is no getting over, under or around grief....you can only go through it. Put on your outdoor face and take on each day as best as you can...because I feel I owe it to Sproggy to make the best of life. We do only get this one shot at it and as much as it sucks at times, I need to live for the things that we can be grateful for...And there are so many.
xxx
Thursday 13 September 2012
Two Faced
It is suicide awareness time at the moment.
It is heart breaking to hear of people (no matter what age), dying this way. It is upsetting to think that whilst there are people out there fighting to live, battling disease or perhaps the effects of accidents, there are people out there who cannot bear to continue living. People who think that their life it so bad or worthless, that there is only one way out.
And what seems to be the most recurring theme in a lot of those cases is that those who are left behind never saw it coming.
Our mental health is as important as our physical health. But while it is perfectly alright to see a doctor about the flu or a pain your stomach, it seems to be much harder to open up to anyone about what is going on in our heads.
Thankfully, I have never been seriously affected by mental health issues other than the usual ups and downs that everyone gets in life....
The death of our son presented a challenge to that particular track record. Somehow, (and I do not know how) we did manage to get through the days following his death and the funeral without medication of any kind and have not needed any since.
But that does not mean we just sail through the times when we are feeling especially down and sad. I have learned of myself that I am finding it extremely difficult to tell people when I am down or depressed. It sometimes seems so hard to get the words out and to admit that, no, you are not "grand". Eventually, I find a way and eventually, I usually get out of that dark place. But I can see how easily one can sink deeper and deeper.
Saying that you are "fine" seems to be the answer that pops out of your mouth when people ask how you are. Even if it is not the case. It is hard to admit to others when you are struggling. It is hard finding the words and it is hard saying them. But why?
Do we expect of ourselves to be able to deal with life and everything it throws at us 100% of the time?
Do we expect of ourselves to just be able to do it all by ourselves without any help?
Everyone has issues. Nobody's life is perfect all the time. We all need help getting through some of the more challenging times.
In my opinion, our mental health is not unlike our physical health. Both can take a battering at times. And it is not a sign of weakness or diminished mental capacity as some might view it. And it is a sign of strength on behalf of those who are able to tackle those issues and seek help.
The stigma needs to be taken away from mental health matters. It should be talked about openly and nobody should be looked down upon for admitting to be struggling.
We all know it is important to talk. Equally, it is important to listen and recognise the sometimes subtle request for help. Maybe in our fast paced, high tech world with so much emphasis on social networking, we just have to re-learn how to do both.
It is heart breaking to hear of people (no matter what age), dying this way. It is upsetting to think that whilst there are people out there fighting to live, battling disease or perhaps the effects of accidents, there are people out there who cannot bear to continue living. People who think that their life it so bad or worthless, that there is only one way out.
And what seems to be the most recurring theme in a lot of those cases is that those who are left behind never saw it coming.
Our mental health is as important as our physical health. But while it is perfectly alright to see a doctor about the flu or a pain your stomach, it seems to be much harder to open up to anyone about what is going on in our heads.
Thankfully, I have never been seriously affected by mental health issues other than the usual ups and downs that everyone gets in life....
The death of our son presented a challenge to that particular track record. Somehow, (and I do not know how) we did manage to get through the days following his death and the funeral without medication of any kind and have not needed any since.
But that does not mean we just sail through the times when we are feeling especially down and sad. I have learned of myself that I am finding it extremely difficult to tell people when I am down or depressed. It sometimes seems so hard to get the words out and to admit that, no, you are not "grand". Eventually, I find a way and eventually, I usually get out of that dark place. But I can see how easily one can sink deeper and deeper.
Saying that you are "fine" seems to be the answer that pops out of your mouth when people ask how you are. Even if it is not the case. It is hard to admit to others when you are struggling. It is hard finding the words and it is hard saying them. But why?
Do we expect of ourselves to be able to deal with life and everything it throws at us 100% of the time?
Do we expect of ourselves to just be able to do it all by ourselves without any help?
Everyone has issues. Nobody's life is perfect all the time. We all need help getting through some of the more challenging times.
In my opinion, our mental health is not unlike our physical health. Both can take a battering at times. And it is not a sign of weakness or diminished mental capacity as some might view it. And it is a sign of strength on behalf of those who are able to tackle those issues and seek help.
The stigma needs to be taken away from mental health matters. It should be talked about openly and nobody should be looked down upon for admitting to be struggling.
We all know it is important to talk. Equally, it is important to listen and recognise the sometimes subtle request for help. Maybe in our fast paced, high tech world with so much emphasis on social networking, we just have to re-learn how to do both.
Thursday 30 August 2012
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.
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.
Wednesday 29 August 2012
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.
"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.
Tuesday 28 August 2012
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.
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.
Friday 24 August 2012
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.
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.
Thursday 26 July 2012
A Lovely Day Out
Thanks to a recent Twitter competition, I got to spend today with 7 fellow Munster rugby supporters and three lovely Munster players. Munster rugby and Adidas were launching the new jersey and us 8 lucky winners were treated to a fabulous day out.
We started by meeting in Thomond Park where we got the stadium tour (well worth it!; particularly loved Jack Gleeson (Joffrey in Game of Thrones) in the "We Are Munster" video) before being whisked off to Adare Manor for a nice bit of grub. During lunch, Keith Earls and Connor Murray arrived in, said hello to us all individually and sat down for their own well-deserved meal post-training.
A little later, Paul O'Connell joined us...again saying hello to each supporter. I was well moved by Paul remembering immediately. Once he had finished introducing himself, he came over to me to sympathise and ask how we had been getting on since Sproggy passed away. Paul said they all could not believe the news at the time and that they had to know him so well during our previous encounters. We got to chat a bit... about Sproggy, life after, Skippy, cats and children. I said that while things are tough, life just drags you along after something like this...you don't get much of a choice. You could bury your head in the sand but where is the point in that. He agreed...
Keith too made a point of saying he was sorry to hear of our loss and I got ask him how is little daughter was doing. I suppose, Keith himself would have held Sproggy in a couple of pictures when he was very young still and as a new father himself...
Those lads are just so nice, approachable, genuine...and...well TALL! I think we all felt dwarfed by especially Paul towering over us with his almost 2meters! One of the lads (proud Munster supporter for half a century!) asked what the weather was like up there where he was :).
We all got our pictures taken as part of the launch of the new jersey. We got to chat to the players, got autographs (and I got my new little secret project well under way! Thanks Paul!), more pictures and the lads even played with the kids of one of the winners.
And...to top things off...the weather was absolutely beautiful. First proper summers day in AGES.
Thank you Sproggy!
Always loved, always missed but never forgotten...by anyone including the good folk at Munster Rugby! xxxxx
We started by meeting in Thomond Park where we got the stadium tour (well worth it!; particularly loved Jack Gleeson (Joffrey in Game of Thrones) in the "We Are Munster" video) before being whisked off to Adare Manor for a nice bit of grub. During lunch, Keith Earls and Connor Murray arrived in, said hello to us all individually and sat down for their own well-deserved meal post-training.
A little later, Paul O'Connell joined us...again saying hello to each supporter. I was well moved by Paul remembering immediately. Once he had finished introducing himself, he came over to me to sympathise and ask how we had been getting on since Sproggy passed away. Paul said they all could not believe the news at the time and that they had to know him so well during our previous encounters. We got to chat a bit... about Sproggy, life after, Skippy, cats and children. I said that while things are tough, life just drags you along after something like this...you don't get much of a choice. You could bury your head in the sand but where is the point in that. He agreed...
Keith too made a point of saying he was sorry to hear of our loss and I got ask him how is little daughter was doing. I suppose, Keith himself would have held Sproggy in a couple of pictures when he was very young still and as a new father himself...
Those lads are just so nice, approachable, genuine...and...well TALL! I think we all felt dwarfed by especially Paul towering over us with his almost 2meters! One of the lads (proud Munster supporter for half a century!) asked what the weather was like up there where he was :).
We all got our pictures taken as part of the launch of the new jersey. We got to chat to the players, got autographs (and I got my new little secret project well under way! Thanks Paul!), more pictures and the lads even played with the kids of one of the winners.
And...to top things off...the weather was absolutely beautiful. First proper summers day in AGES.
Thank you Sproggy!
Always loved, always missed but never forgotten...by anyone including the good folk at Munster Rugby! xxxxx
Thursday 21 June 2012
Something that has helped me tremendously since Patrick passed away was being secure in the knowledge that he just slipped away quietly. That he never noticed anything happening to him. That he did not suffer.
At least that was the message we either got, or chose to get from what we were told by those involved. That is, by all accounts, what it looked like.
I do still hope that was the case because honestly, I cannot not bear the thought that he might have been scared in those last moments...with neither of us beside him.
During our call with the wonderful Dr. Krous, he raised a few possibilities that sort of unsettled me a bit in that regard.
The fact that there were food particles in his lungs had previously been explained by the resuscitation attempts that went on for about an hour. Seeing that he had eaten his lunch just before nap time, it would probably not be uncommon to have stomach contents dislodged during this, at times, very forceful process of trying to bring him back. Dr. Krous however, introduced the possibility that Patrick may have suffered some kind of a seizure which would also explain what was found. Unfortunately, if I remember correctly, he did not have the samples/information he might have needed to determine for sure whether or not this could have been the case. (Some form of standardized procedure reg the autopsies of those kind of deaths may be beneficial in ensuring that research facilities get to receive information that will have all areas covered?)
Another possibility would be some sort of cardiac condition that went undetected. Long QT (or a form thereof) being an option. Again, there are cardiac problems that cannot be detected postmortem. Only genetic testing could show whether or not Patrick may have suffered from some cardiac condition.
Either way, both options have for me (and my head loves to do those things) called into doubt that thought of him just slipping away in his sleep. I now wonder what if...
And if there is one thing I would have hated, it is that. That he was scared, or suffered in any way...be it physically or emotionally. I guess we might never know for sure and I also reckon I should have asked Dr. Krous this at the time because I do think my imagination may be running away with me here.
We did get the recommendation to get ourselves and the young lad tested thoroughly again and have already gotten in touch with CRY Ireland who offer cardiac screening to families affected by the sudden loss of a young person/family member.
I guess this is all we can do right now. Get ourselves checked out.
I just hope my little boy did not feel frightened and was not in pain when it happened. As we were not able to be with him and hold him, I hope that someone from the other side took him gently and minded him.
Miss you loads my little darling...
P.S.
(By the way, Dr Krous did mention that he did not think the apparent lack of neurons around the arcuate medulla would have had anything to do with it. He feels the lack of neurons could be explained by where the sample was taken from and how and probably had nothing to do with the outcome...Instead, while they could not detect anything from the information they had at hand and therefore ruled his death SUDC, they figure that either something along the seizure or cardiac could potentially be to blame.)
At least that was the message we either got, or chose to get from what we were told by those involved. That is, by all accounts, what it looked like.
I do still hope that was the case because honestly, I cannot not bear the thought that he might have been scared in those last moments...with neither of us beside him.
During our call with the wonderful Dr. Krous, he raised a few possibilities that sort of unsettled me a bit in that regard.
The fact that there were food particles in his lungs had previously been explained by the resuscitation attempts that went on for about an hour. Seeing that he had eaten his lunch just before nap time, it would probably not be uncommon to have stomach contents dislodged during this, at times, very forceful process of trying to bring him back. Dr. Krous however, introduced the possibility that Patrick may have suffered some kind of a seizure which would also explain what was found. Unfortunately, if I remember correctly, he did not have the samples/information he might have needed to determine for sure whether or not this could have been the case. (Some form of standardized procedure reg the autopsies of those kind of deaths may be beneficial in ensuring that research facilities get to receive information that will have all areas covered?)
Another possibility would be some sort of cardiac condition that went undetected. Long QT (or a form thereof) being an option. Again, there are cardiac problems that cannot be detected postmortem. Only genetic testing could show whether or not Patrick may have suffered from some cardiac condition.
Either way, both options have for me (and my head loves to do those things) called into doubt that thought of him just slipping away in his sleep. I now wonder what if...
And if there is one thing I would have hated, it is that. That he was scared, or suffered in any way...be it physically or emotionally. I guess we might never know for sure and I also reckon I should have asked Dr. Krous this at the time because I do think my imagination may be running away with me here.
We did get the recommendation to get ourselves and the young lad tested thoroughly again and have already gotten in touch with CRY Ireland who offer cardiac screening to families affected by the sudden loss of a young person/family member.
I guess this is all we can do right now. Get ourselves checked out.
I just hope my little boy did not feel frightened and was not in pain when it happened. As we were not able to be with him and hold him, I hope that someone from the other side took him gently and minded him.
Miss you loads my little darling...
P.S.
(By the way, Dr Krous did mention that he did not think the apparent lack of neurons around the arcuate medulla would have had anything to do with it. He feels the lack of neurons could be explained by where the sample was taken from and how and probably had nothing to do with the outcome...Instead, while they could not detect anything from the information they had at hand and therefore ruled his death SUDC, they figure that either something along the seizure or cardiac could potentially be to blame.)
Thursday 31 May 2012
The Results Are In!
Interesting how more often than not, my occasional times of severe struggle are coinciding with something or other happening that make me go: Ahhh...that is why I have been so down lately. Just how did my subconscious know?
Received notification today that Dr. Krous and his team have completed their work on Patrick's case and reviewed their report which is basically a complete and detailed account of family medical history, ante-natal care, Patrick's birth, development, medical history, death, postmortem etc etc etc. They reviewed the postmortem results from Limerick and had a fresh look at the info and samples and drew their own conclusions.
The end result? A re-iteration of the original verdict...SUDC (though here they call it SUDI).
They did note one thing that I will be interested in learning more about when we have the follow up conf call.
To put it simply, they felt it noteworthy that the part of the brain where the centre for breathing is situated, appeared to be...well not quite under-developed but not as developed as they would expect it to be. It was lacking neurons, to be more precise. In the sample they had, they saw way less neurons than they would have expected. BUT...to make a definite call whether this could be classed as arcuate hypoplasia, they would have had to have more samples...or something. AND whether or not this would have had an impact on things is not for certain either.
As per Wikipedia:
"In the medulla oblongata, the arcuate nucleus is a group of neurons located on the anterior surface of the medullary pyramids. They receive fibers from the corticospinal tract and send their axons through the anterior external arcuate fibers and striae medullares to the cerebellum via the inferior cerebellar peduncle.
Arcuate nuclei are capable of chemosensitivity and have a proven role in controlling respiratory frequency."
Odd...I think with SIDS there are theories out there that an underdevelopment of that part of the brain may have something to do with it. Something goes whallop...the brain ceases to tell to body to keep breathing, breathing stops, heart is affected,as oxygen levels drop (which does not help in kicking the brain into action again)...
I don't know but my gut tells me this is possible how it might have happened. Though what causes that part of the brain not to be developed to the extent it should be is perhaps something that is not yet known....or whether this is a contributor in the first place. Who knows...we could all be barking up the wrong tree altogether. But at least this theory makes sense to me.
It was tough to see our story detailed like that. To see Patrick's last day described, his organs and their weight listed, an account of what happened when he was found.
More so it was hard to see the time of death. It occurred to me that I had never actually known the time of death. I've been meaning to look at the death cert but had not done so.
14:34, January 25, 2011. That is when he was pronounced.
Unbelievable still. I cannot understand how this healthy, chirpy little boy is no longer with us and right now tucked up in his bed upstairs. I often see things that make me think: "Patrick would have gotten such a kick out of that!"
20:52, April 05, 2009 - 14:34 January 25, 2011
I miss you more than any words could ever express, Sproggy. Keep minding us from where you are and keep sending those little signs. Love you loads!
Received notification today that Dr. Krous and his team have completed their work on Patrick's case and reviewed their report which is basically a complete and detailed account of family medical history, ante-natal care, Patrick's birth, development, medical history, death, postmortem etc etc etc. They reviewed the postmortem results from Limerick and had a fresh look at the info and samples and drew their own conclusions.
The end result? A re-iteration of the original verdict...SUDC (though here they call it SUDI).
They did note one thing that I will be interested in learning more about when we have the follow up conf call.
To put it simply, they felt it noteworthy that the part of the brain where the centre for breathing is situated, appeared to be...well not quite under-developed but not as developed as they would expect it to be. It was lacking neurons, to be more precise. In the sample they had, they saw way less neurons than they would have expected. BUT...to make a definite call whether this could be classed as arcuate hypoplasia, they would have had to have more samples...or something. AND whether or not this would have had an impact on things is not for certain either.
As per Wikipedia:
"In the medulla oblongata, the arcuate nucleus is a group of neurons located on the anterior surface of the medullary pyramids. They receive fibers from the corticospinal tract and send their axons through the anterior external arcuate fibers and striae medullares to the cerebellum via the inferior cerebellar peduncle.
Arcuate nuclei are capable of chemosensitivity and have a proven role in controlling respiratory frequency."
Odd...I think with SIDS there are theories out there that an underdevelopment of that part of the brain may have something to do with it. Something goes whallop...the brain ceases to tell to body to keep breathing, breathing stops, heart is affected,as oxygen levels drop (which does not help in kicking the brain into action again)...
I don't know but my gut tells me this is possible how it might have happened. Though what causes that part of the brain not to be developed to the extent it should be is perhaps something that is not yet known....or whether this is a contributor in the first place. Who knows...we could all be barking up the wrong tree altogether. But at least this theory makes sense to me.
It was tough to see our story detailed like that. To see Patrick's last day described, his organs and their weight listed, an account of what happened when he was found.
More so it was hard to see the time of death. It occurred to me that I had never actually known the time of death. I've been meaning to look at the death cert but had not done so.
14:34, January 25, 2011. That is when he was pronounced.
Unbelievable still. I cannot understand how this healthy, chirpy little boy is no longer with us and right now tucked up in his bed upstairs. I often see things that make me think: "Patrick would have gotten such a kick out of that!"
20:52, April 05, 2009 - 14:34 January 25, 2011
I miss you more than any words could ever express, Sproggy. Keep minding us from where you are and keep sending those little signs. Love you loads!
Struggling
Such a simple word. Now why did I not think of that one yesterday? It really sums up what I have been doing. Struggling. These last few days have been hard. My head has been a mess of sad memories, worries, fears. I have been struggling. There you have it.
It is sort of interesting to see patterns of how I usually do that emerge. When I am having a hard time, I will retreat. I will take a momentary leave of absence from my social live and just be with myself....and Skippy. I think I need that time and space to mull things over in my head before I reach the point at which I am finally able to verbalize what's happening in my head.
Not being able to verbalize (thanks for giving me that phrase, Helen!) bugs the hell out of me. Though, eventually I always reach that point.
After that, I begin the slow process of coming out of my emotional hiding place.
Now I just have to find a way to speed up that process if at all possible. Now that I recognise and understand the pattern, that should be a piece of cake, no???
It is sort of interesting to see patterns of how I usually do that emerge. When I am having a hard time, I will retreat. I will take a momentary leave of absence from my social live and just be with myself....and Skippy. I think I need that time and space to mull things over in my head before I reach the point at which I am finally able to verbalize what's happening in my head.
Not being able to verbalize (thanks for giving me that phrase, Helen!) bugs the hell out of me. Though, eventually I always reach that point.
After that, I begin the slow process of coming out of my emotional hiding place.
Now I just have to find a way to speed up that process if at all possible. Now that I recognise and understand the pattern, that should be a piece of cake, no???
Wednesday 30 May 2012
Lost
Definitely and utterly lost. The last few days have amounted to nothing more but depression central. Not even trips to the beach and fresh sea air could alleviate that feeling of being incredibly lost...and confused.
Nor did immersing myself in other peoples problems (Greys Anatomy season finale) seem to help. Balls to that. Maybe the writing will help? (Here is to hoping.)
But ask me to define..well..anything - Beats me. Everything? Anything?
Not being able to hear Patrick's footsteps as he trip traps around the bedroom in the mornings anymore. And the way he peeped through the bars at the foot end of the bed. I never did manage to take a picture of that.
Just him being gone and fading from our daily lives.
Remembering and for some reason re-living "that" day more often right now.
Worrying about something happening to Eoghan, too.
Being very anxious about going back to work. I am really not sure how I will deal with a number of things about that one.
For one, not being able to do what has been keeping me somewhat sane for now. Being out, walking, jogging (of late), having plenty of me time for my own mental health. Not that it is working all the time!
Then, and perhaps most importantly, not being able to spend as much time with Eoghan anymore. It occurred to me that the girls in the creche probably knew Patrick better than we did. Or rather knew sides of him that we had not yet seen at home. And that would be normal enough considering how much time kids spend there. Still, it hurts to realise that all the same. You sort of wish that all company's worked towards better work/life balances....and really, I cannot complain about my place at all as they are extremely supportive and always have been but working hours are what they are.
How will I cope with Eoghan being in the creche? Right now the thought of that really ... hmmm...what. I am not sure. Freaks me out? Scares me? I just honestly do not know how I will cope. While I have 100% trust in the creche, I really worry that when I am cooped up inside that office, I might be overwhelmed by (irrational) fears.
Oh I don't know. I just feel really lost and confused and scared right now. Above all, I am really missing my little man...Eoghan's big brother.
I guess these times are part and parcel of this journey and I just have to keep following down that road hoping it gets a little less bumpy again for a bit...before the next bumpy stretch. Right now I just want to switch myself off and wait until I have made it out the other side...
Nor did immersing myself in other peoples problems (Greys Anatomy season finale) seem to help. Balls to that. Maybe the writing will help? (Here is to hoping.)
But ask me to define..well..anything - Beats me. Everything? Anything?
Not being able to hear Patrick's footsteps as he trip traps around the bedroom in the mornings anymore. And the way he peeped through the bars at the foot end of the bed. I never did manage to take a picture of that.
Just him being gone and fading from our daily lives.
Remembering and for some reason re-living "that" day more often right now.
Worrying about something happening to Eoghan, too.
Being very anxious about going back to work. I am really not sure how I will deal with a number of things about that one.
For one, not being able to do what has been keeping me somewhat sane for now. Being out, walking, jogging (of late), having plenty of me time for my own mental health. Not that it is working all the time!
Then, and perhaps most importantly, not being able to spend as much time with Eoghan anymore. It occurred to me that the girls in the creche probably knew Patrick better than we did. Or rather knew sides of him that we had not yet seen at home. And that would be normal enough considering how much time kids spend there. Still, it hurts to realise that all the same. You sort of wish that all company's worked towards better work/life balances....and really, I cannot complain about my place at all as they are extremely supportive and always have been but working hours are what they are.
How will I cope with Eoghan being in the creche? Right now the thought of that really ... hmmm...what. I am not sure. Freaks me out? Scares me? I just honestly do not know how I will cope. While I have 100% trust in the creche, I really worry that when I am cooped up inside that office, I might be overwhelmed by (irrational) fears.
Oh I don't know. I just feel really lost and confused and scared right now. Above all, I am really missing my little man...Eoghan's big brother.
I guess these times are part and parcel of this journey and I just have to keep following down that road hoping it gets a little less bumpy again for a bit...before the next bumpy stretch. Right now I just want to switch myself off and wait until I have made it out the other side...
Friday 18 May 2012
Letting Go - Do we have to?
It is funny...a brief glance around the bedroom this morning and a rummage around my brain just a second ago made me realise something:
1. The towel we used to change Patrick on the bed in the mornings is still hanging over the bed post...just where it was put the last time it was used on him the morning of January 25th. Have not washed it and have not even thought of taking it away to wash it. Neither do I know when it might get taken away.
2. The jumper Pat wore that day is also still somewhere at the back of the wardrobe...unwashed.
3. Patrick's things are still in the creche also.
Three things I am not able or willing to address...almost 16 months on. And I am not even sure why those things and not something else. I need them to be where they are and I want them to remain where they are.
How very unlike my otherwise so organised self. Maybe it is a bit like what Pat was feeling those first weeks and months every time he came home to something being done in the house:
Too much has changed already. Enough with the changes, let's keep things where they were when everything was right and familiar and the way they were supposed to be.
Some changes we have no influence over, so let's be careful how we deal with those we have a say in.
Knowing those 3 things are where they are, gives me some strange comfort...so why change that....
1. The towel we used to change Patrick on the bed in the mornings is still hanging over the bed post...just where it was put the last time it was used on him the morning of January 25th. Have not washed it and have not even thought of taking it away to wash it. Neither do I know when it might get taken away.
2. The jumper Pat wore that day is also still somewhere at the back of the wardrobe...unwashed.
3. Patrick's things are still in the creche also.
Three things I am not able or willing to address...almost 16 months on. And I am not even sure why those things and not something else. I need them to be where they are and I want them to remain where they are.
How very unlike my otherwise so organised self. Maybe it is a bit like what Pat was feeling those first weeks and months every time he came home to something being done in the house:
Too much has changed already. Enough with the changes, let's keep things where they were when everything was right and familiar and the way they were supposed to be.
Some changes we have no influence over, so let's be careful how we deal with those we have a say in.
Knowing those 3 things are where they are, gives me some strange comfort...so why change that....
Friday 11 May 2012
What now?
So, apparently, bereaved parents are being looked after sufficiently in this country by means of HSE services...or so the powers that be claim.
What now?
The only people really looking after us are charities which are mainly funded by private donations. They are groups of people that are united by the loss of one or even more children. Those are the people who look after each other and the newly bereaved. Those are the people who truly care, it seems.
In our experience, the only "help" we got from the HSE (not counting the wonderful nurses and front line staff who treated us with such compassion and dignity!) was pamphlets and brochures that pointed us to those charities.
In our case, it was even one charity itself...the SUDC Program who made contact with us as opposed to us looking for them!
So...real assistance from the government? I do not think so.
It appears that some time back when SIDS rates were higher, funding for research was made available. Now that rates have dropped, there is no more research being done because, as I understand it, it is not economically viable.
So what if the figure is down to 30 odd. That is still 30odd children who died for no apparent reason. That is still 60 mums and dad's and countless siblings and family whose world got turned upside down.
Do we not count? Do our children not count? Does our grief not count?
So, dear "powers that be", when you meet those charities about funding, think, REALLY think about what you are doing and do not keep cutting assistance. I know our children are dead and thus lost causes...but WE are still around and desperately trying to make sense of our new reality. And we do need the help!
We benefit from meeting other parents in the same boat. Where else can you openly talk about your experience in ways that you cannot with people who aren't in the same place?
Where else can you talk frankly about what it was like, looking at and touching your dead child. How they perhaps looked different in death. What it felt like to hold them that last time. What it was like for us to see them start deteriorate. How painful it was to listen to the sound of that first shovel of earth hitting that tiny white coffin in the ground....imagining them in there (or perhaps that is just me...).
This is all stuff that is not commonly spoken about. When meeting other parents, you can speak about this. When seeing a counselor, you can speak about this.
Those charities help with providing those vital services that perhaps in some cases may make the difference between someone making it through the grief or packing it all in because they do not see a way out!
So...think! Treat them with dignity, compassion and above all: LISTEN to their stories.
Or at the very least make a better attempt at pretending to give a toss!
Thanks...
Yours truly,
Muggins Taxpayer
P.S. Maybe you could work on a standardised process and some more staff training as well...that might mean less stories from parents about vast differences in treatment by the officials.
Handing the freshly bereaved, utterly bewildered parents the phonebook and telling them to go looking for an undertaker when they are still in the hospital minutes after their child passed away asking: "What do we do now?".... Really?! I am sure they could have done with a hug instead of being handed the phonebook!
What now?
The only people really looking after us are charities which are mainly funded by private donations. They are groups of people that are united by the loss of one or even more children. Those are the people who look after each other and the newly bereaved. Those are the people who truly care, it seems.
In our experience, the only "help" we got from the HSE (not counting the wonderful nurses and front line staff who treated us with such compassion and dignity!) was pamphlets and brochures that pointed us to those charities.
In our case, it was even one charity itself...the SUDC Program who made contact with us as opposed to us looking for them!
So...real assistance from the government? I do not think so.
It appears that some time back when SIDS rates were higher, funding for research was made available. Now that rates have dropped, there is no more research being done because, as I understand it, it is not economically viable.
So what if the figure is down to 30 odd. That is still 30odd children who died for no apparent reason. That is still 60 mums and dad's and countless siblings and family whose world got turned upside down.
Do we not count? Do our children not count? Does our grief not count?
So, dear "powers that be", when you meet those charities about funding, think, REALLY think about what you are doing and do not keep cutting assistance. I know our children are dead and thus lost causes...but WE are still around and desperately trying to make sense of our new reality. And we do need the help!
We benefit from meeting other parents in the same boat. Where else can you openly talk about your experience in ways that you cannot with people who aren't in the same place?
Where else can you talk frankly about what it was like, looking at and touching your dead child. How they perhaps looked different in death. What it felt like to hold them that last time. What it was like for us to see them start deteriorate. How painful it was to listen to the sound of that first shovel of earth hitting that tiny white coffin in the ground....imagining them in there (or perhaps that is just me...).
This is all stuff that is not commonly spoken about. When meeting other parents, you can speak about this. When seeing a counselor, you can speak about this.
Those charities help with providing those vital services that perhaps in some cases may make the difference between someone making it through the grief or packing it all in because they do not see a way out!
So...think! Treat them with dignity, compassion and above all: LISTEN to their stories.
Or at the very least make a better attempt at pretending to give a toss!
Thanks...
Yours truly,
Muggins Taxpayer
P.S. Maybe you could work on a standardised process and some more staff training as well...that might mean less stories from parents about vast differences in treatment by the officials.
Handing the freshly bereaved, utterly bewildered parents the phonebook and telling them to go looking for an undertaker when they are still in the hospital minutes after their child passed away asking: "What do we do now?".... Really?! I am sure they could have done with a hug instead of being handed the phonebook!
Tuesday 24 April 2012
Imagination versus Reality
Hands up who has heard the following after losing a loved one, in particular perhaps a child or spouse? Or perhaps thought this of someone who has lost someone?:
1. You are so strong!
2. How do you keep going?
3. I cannot imagine being in your shoes.
4. How do you get out of bed in the morning?
In my own personal experience of losing my son, I have concluded for myself that the imagined reality of losing a child can perhaps be "worse-different" (my own word creation) than the actual reality of living it.
I have been there...before and after. Once I became a mother, watching programs on TV about losing a child/something horrible happening to children/sick children would make me look at Patrick, my healthy, gorgeous boy and shudder. While it might have upset me before as well, it hit me at a whole new different level. I could not imagine what it would be like if this or that happened to him. Surely, I would no longer be able to function. Like, when you hear of a cot death, you immediately think of your own and picture them in that circumstance and your brain goes into a meltdown.
As absolutely horrible, life-changing and detrimental Patrick's death has been to me, living with this reality is strangely not as horrendously bad as I would have previously imagined this situation to be. (Speaking from my own experience only!)
You see...I do not have a choice. Like it or not...this is my new normal. I did not get to decide on this or opt out of it. I have to learn to live with it and once we get thrown into situations, we tend to adapt...at our own pace.
1. I may appear strong but what else am I supposed to do? I sometimes do not want to have to be strong but life keeps on happening around me and pulls me with it. The cracks are there all the same ... don't let that fool you. Half the time, I am only half-present, mentally. The other half I am not sure who I am anymore and seem to wander aimlessly on this strange path learning something new about the new me.
2. You have got to keep going. There is no choice. The sun comes up every morning like before. Even though, as my husband so aptly put it, you are angry that the sun did come up the day after. How dare the world keep turning when it just ground to a halt for you? How dare the birds keep chirping? Hadn't they heard?
3. Imagining going through something like this, wondering, what you would do if this happened to your child...I think is traumatic enough in its own right. If I meet people and they hear about Patrick and I see the shock and sadness in their eyes, I know that they will most likely, at least for a while, re-evaluate their own life. They will think of their kids and hug them that bit tighter that night, thanking God they are OK. I know that is what I would have done/do.
4. You put one foot in front of the other and keep plodding along. Some days are good, some bad, some outright horrible.
But...I now tend to try and be more grateful for the time we had with Patrick, remembering his life and not just his death. I am grateful for the way his brother came along so quickly and indeed, for being able to have another healthy baby in the first place. I am thankful that I have my husband, my rock, my friend and my shoulder to cry on. And for being able to be his (smaller) rock when he needs it. I believe I would struggle more if it was not for him and Eoghan.
Things could have been and could be so much worse. I try and remember that when this huge sense of loss tries to get the better of me at times.
1. You are so strong!
2. How do you keep going?
3. I cannot imagine being in your shoes.
4. How do you get out of bed in the morning?
In my own personal experience of losing my son, I have concluded for myself that the imagined reality of losing a child can perhaps be "worse-different" (my own word creation) than the actual reality of living it.
I have been there...before and after. Once I became a mother, watching programs on TV about losing a child/something horrible happening to children/sick children would make me look at Patrick, my healthy, gorgeous boy and shudder. While it might have upset me before as well, it hit me at a whole new different level. I could not imagine what it would be like if this or that happened to him. Surely, I would no longer be able to function. Like, when you hear of a cot death, you immediately think of your own and picture them in that circumstance and your brain goes into a meltdown.
As absolutely horrible, life-changing and detrimental Patrick's death has been to me, living with this reality is strangely not as horrendously bad as I would have previously imagined this situation to be. (Speaking from my own experience only!)
You see...I do not have a choice. Like it or not...this is my new normal. I did not get to decide on this or opt out of it. I have to learn to live with it and once we get thrown into situations, we tend to adapt...at our own pace.
1. I may appear strong but what else am I supposed to do? I sometimes do not want to have to be strong but life keeps on happening around me and pulls me with it. The cracks are there all the same ... don't let that fool you. Half the time, I am only half-present, mentally. The other half I am not sure who I am anymore and seem to wander aimlessly on this strange path learning something new about the new me.
2. You have got to keep going. There is no choice. The sun comes up every morning like before. Even though, as my husband so aptly put it, you are angry that the sun did come up the day after. How dare the world keep turning when it just ground to a halt for you? How dare the birds keep chirping? Hadn't they heard?
3. Imagining going through something like this, wondering, what you would do if this happened to your child...I think is traumatic enough in its own right. If I meet people and they hear about Patrick and I see the shock and sadness in their eyes, I know that they will most likely, at least for a while, re-evaluate their own life. They will think of their kids and hug them that bit tighter that night, thanking God they are OK. I know that is what I would have done/do.
4. You put one foot in front of the other and keep plodding along. Some days are good, some bad, some outright horrible.
But...I now tend to try and be more grateful for the time we had with Patrick, remembering his life and not just his death. I am grateful for the way his brother came along so quickly and indeed, for being able to have another healthy baby in the first place. I am thankful that I have my husband, my rock, my friend and my shoulder to cry on. And for being able to be his (smaller) rock when he needs it. I believe I would struggle more if it was not for him and Eoghan.
Things could have been and could be so much worse. I try and remember that when this huge sense of loss tries to get the better of me at times.
Friday 20 April 2012
Sproggy working his magic
Patrick's bag is still down in the creche along with his other belongings. It is one of those things...it has not yet felt right to bring those things home.
We have, however, spent a good while looking for a second bag. I had given up at this point thinking that it was an item in the touristy shops that just had been and gone.
But...the other day in Liffey Valley, I spotted them. I was on my way to the car to get on the road home but had to run back into the shopping centre. I saw something across the way in a shop and though it looked like the bag.
Well...I nearly took out two people with the buggy as I sprinted across to get into that shop. Low and behold...there they were. Decided to pick up two.
It was actually quite emotional finding them after all this time and I could have dissolved into tears there and then. I am sure Sproggy had a hand in me finding them. Thanks Sproggy. :)
Saturday 14 April 2012
Life with a subsequent child
All throughout the pregnancy, I had been fretting over what it would be like having another baby in the house. I wrote about the loss of my innocence and confidence. Would I ever be able to go walking with the buggy like I used to, like I saw people do wondering: "How would you ever know if they just slipped away and died on the way?!" What if he looked like Patrick? What if he would not?
So, how has it been?
Eoghan has turned out to be equally placid as his big brother. Very little bother with him at all. There are times and pictures, where the two boys look very alike and I do take comfort in that. I like to think that part of Patrick lives on in his younger sibling.
I just hope that I never give him the feeling that he is growing up in the shadow of his dead older brother...if that makes any sense. I know he is his own little person and I must not ever forget to treat him as such. I cannot imagine I ever would, so why are those thoughts even running through my head? Perhaps it is because there are days when it feels like it never happened. We never had a child, who died. My head seems to temporarily go into a denial mode and pretend as though this is all a first. First baby home, happy families, all is rosy...but which one? Is it Patrick or Eoghan? Sometimes one, sometimes the other; I guess.
Again, this is all on a very subconscious level...split seconds of thoughts. But! I am aware of them and because I am, I think that while part of Patrick might live on in Eoghan, Eoghan will always be his own little person and cannot be compared to his brother beyond the usual way parents will compare siblings.
Surprisingly, for me, I was less anxious about looking after Eoghan than I thought I would be. A lot less, in fact. He sleeps beside us, in an Armsreach Co Sleeper and that probably explains the peaceful nights sleep we have been getting since his arrival. Since the day we brought him home and he moved into the co-sleeper, I have been going to sleep holding his little hand. It has become a comfort thing for me more so than him as he quite happily goes to sleep without either of us having to stay by his side until he drifts off. I like having him close.
I find I regained that confidence. I walk with him. He naps in his buggy and I am not worried every second of every moment that something might happen.
Oddly, while I was not very nervous at the start, I can feel myself becoming more worried and anxious nowadays. Not all the time, but every now and then.
Like...what if it happens again?
What if he does not wake up in the morning?
Not sure what that means. Perhaps the anxiety will naturally peak when he is the same age his brother passed away at and slowly begin to subside afterwards?
One surprising thing I have learned about myself now: I cannot stand looking at him sleeping in a cot. Not entirely sure why but the one night he did sleep in a one recently, I did not sleep well and could not bear looking at him in it. It reminded me too much of the last images I have of Patrick in a cot...at his wake. I actually nearly went cuckoo looking at him. The next night, we changed sleeping arrangements and I felt better.
So...life with a subsequent child is full of surprises. What you fret about before, may not be an issue in the end while other things crop up and knock you sideways completely out of the blue. Overall though, having this little chap here with us, seeing him grow, seeing him smile and develop his personality...this all makes me feel very grateful. We could not imagine life without him and we can just hope that life will not throw us another curve ball...
So, how has it been?
Eoghan has turned out to be equally placid as his big brother. Very little bother with him at all. There are times and pictures, where the two boys look very alike and I do take comfort in that. I like to think that part of Patrick lives on in his younger sibling.
I just hope that I never give him the feeling that he is growing up in the shadow of his dead older brother...if that makes any sense. I know he is his own little person and I must not ever forget to treat him as such. I cannot imagine I ever would, so why are those thoughts even running through my head? Perhaps it is because there are days when it feels like it never happened. We never had a child, who died. My head seems to temporarily go into a denial mode and pretend as though this is all a first. First baby home, happy families, all is rosy...but which one? Is it Patrick or Eoghan? Sometimes one, sometimes the other; I guess.
Again, this is all on a very subconscious level...split seconds of thoughts. But! I am aware of them and because I am, I think that while part of Patrick might live on in Eoghan, Eoghan will always be his own little person and cannot be compared to his brother beyond the usual way parents will compare siblings.
Surprisingly, for me, I was less anxious about looking after Eoghan than I thought I would be. A lot less, in fact. He sleeps beside us, in an Armsreach Co Sleeper and that probably explains the peaceful nights sleep we have been getting since his arrival. Since the day we brought him home and he moved into the co-sleeper, I have been going to sleep holding his little hand. It has become a comfort thing for me more so than him as he quite happily goes to sleep without either of us having to stay by his side until he drifts off. I like having him close.
I find I regained that confidence. I walk with him. He naps in his buggy and I am not worried every second of every moment that something might happen.
Oddly, while I was not very nervous at the start, I can feel myself becoming more worried and anxious nowadays. Not all the time, but every now and then.
Like...what if it happens again?
What if he does not wake up in the morning?
Not sure what that means. Perhaps the anxiety will naturally peak when he is the same age his brother passed away at and slowly begin to subside afterwards?
One surprising thing I have learned about myself now: I cannot stand looking at him sleeping in a cot. Not entirely sure why but the one night he did sleep in a one recently, I did not sleep well and could not bear looking at him in it. It reminded me too much of the last images I have of Patrick in a cot...at his wake. I actually nearly went cuckoo looking at him. The next night, we changed sleeping arrangements and I felt better.
So...life with a subsequent child is full of surprises. What you fret about before, may not be an issue in the end while other things crop up and knock you sideways completely out of the blue. Overall though, having this little chap here with us, seeing him grow, seeing him smile and develop his personality...this all makes me feel very grateful. We could not imagine life without him and we can just hope that life will not throw us another curve ball...
Friday 13 April 2012
Patrick's Birthday
How do you deal with a birthday under these circumstances? Having spoken to other parents in the same boat, it always seems to involve balloons and possibly chinese lanterns.
It is a hard day to face, no doubt. Emotionally very challenging. You may not feel like doing anything but eventually, you will come up with something that will become a little family routine for the rest of your life.
I think for us it will be releasing balloons at the creche and grave and a family dinner. For sure, we will take this day off always and do something as a family. We want him to be remembered. I know, nobody who ever really knew him would ever forget him but I do have that fear that his memory will fade with time.
There are no words to describe how much I miss this little man.
In the past year, he has had 4 trees planted in his name and a lamb named after him. That just goes to show how much people care and for us, his parents, that means a lot.
Sproggy, the lamb, as it was last year. I am sure it has grown big and strong by now.
Patrick's tree at the crèche. It was planted the day of the first anniversary of his death. A lot of our friends were gathered at the crèche for it.
Patrick's Patch in the crèche...a wall space dedicated to our little man, decorated with loads of stuff. We were moved beyond tears when we saw it for the first time. It is hard looking at it because it makes it all so real but it was so lovely of the girls to have done this.
It is a hard day to face, no doubt. Emotionally very challenging. You may not feel like doing anything but eventually, you will come up with something that will become a little family routine for the rest of your life.
I think for us it will be releasing balloons at the creche and grave and a family dinner. For sure, we will take this day off always and do something as a family. We want him to be remembered. I know, nobody who ever really knew him would ever forget him but I do have that fear that his memory will fade with time.
There are no words to describe how much I miss this little man.
In the past year, he has had 4 trees planted in his name and a lamb named after him. That just goes to show how much people care and for us, his parents, that means a lot.
Sproggy, the lamb, as it was last year. I am sure it has grown big and strong by now.
Patrick's tree at the crèche. It was planted the day of the first anniversary of his death. A lot of our friends were gathered at the crèche for it.
Patrick's Patch in the crèche...a wall space dedicated to our little man, decorated with loads of stuff. We were moved beyond tears when we saw it for the first time. It is hard looking at it because it makes it all so real but it was so lovely of the girls to have done this.
Titanic 100 Anniversary
Just a few days ago I saw a program about the aftermath of the sinking of the Titanic on April 14 1912. It focused on how they dealt with the recovery of bodies.
One of the bodies recovered by the recovery ship was that of a 3 year old little boy (the only child to be recovered, I believe), blond, curly hair. As instructed, the recovery team burnt his clothes but kept the shoes as an item that may help identify him upon return to Halifax. He was never identified. The recovery ships crew paid for this little boys funeral in Halifax from the reward money they received from John Jacob Astors son for bringing home his fathers body.
It filled me with great sadness to think that there was nobody in the whole world to claim this small boy. Perhaps all his family went down with the ship. A whole family wiped out. Nobody to miss him or look for him.
I guess, the description of him as a blond, curly haired tot just struck a cord with me...seeing that Patrick was much the same...blond and curly haired. I do hope that he was reunited with his loved one and was moved to hear that the crew helped give him a proper burial.
One of the bodies recovered by the recovery ship was that of a 3 year old little boy (the only child to be recovered, I believe), blond, curly hair. As instructed, the recovery team burnt his clothes but kept the shoes as an item that may help identify him upon return to Halifax. He was never identified. The recovery ships crew paid for this little boys funeral in Halifax from the reward money they received from John Jacob Astors son for bringing home his fathers body.
It filled me with great sadness to think that there was nobody in the whole world to claim this small boy. Perhaps all his family went down with the ship. A whole family wiped out. Nobody to miss him or look for him.
I guess, the description of him as a blond, curly haired tot just struck a cord with me...seeing that Patrick was much the same...blond and curly haired. I do hope that he was reunited with his loved one and was moved to hear that the crew helped give him a proper burial.
A Stroll For Sproggy
To do something useful, I guess, we decided at the start of the year to take part in the Great Limerick Run and raise funds for the SUDC. The husband, in a stroke of genius, came up with the name: A Stroll For Sproggy
Once we told people, it just snowballed. Loads have come out to support us and walk with us.
Niall Colgan Hairdressing (best hairdressers in the region as far as I am concerned!)
Little Treasures Creche
Power-One peoples
Family and Friends
These are just some of the folks who are walking with us.
Eoghan will have his own t-shirt to wear on the day and we are looking forward to doing this.
We hope we raise a good bit for research. I really hope some day we get to a point where we know what triggers SUDC and perhaps even how to spot signs and prevent it.
http://cjsids.donorpages.com/SUDCStars/StephanieOLoughlin/
Makes me feel like we are doing something when we feel so utterly useless in the face of it all....
Once we told people, it just snowballed. Loads have come out to support us and walk with us.
Niall Colgan Hairdressing (best hairdressers in the region as far as I am concerned!)
Little Treasures Creche
Power-One peoples
Family and Friends
These are just some of the folks who are walking with us.
Eoghan will have his own t-shirt to wear on the day and we are looking forward to doing this.
We hope we raise a good bit for research. I really hope some day we get to a point where we know what triggers SUDC and perhaps even how to spot signs and prevent it.
http://cjsids.donorpages.com/SUDCStars/StephanieOLoughlin/
Makes me feel like we are doing something when we feel so utterly useless in the face of it all....
So Where Are We Now?
Unbelievably, it has already been over one year since Patrick passed away. Eoghan is already almost 6 months old. And man, they do look alike a lot of the times.
Patrick
Eoghan
Time seems to go by so incredibly fast. When did that begin to happen? I still remember when time seemed to be in such plentiful supply...when summers were endless. When did that change?
Where are we now though?
A hard question to answer. Personally, I feel that a lot of the times, I am still in some sort of a haze. Days go by, I do what I do and what needs to be done. I laugh, I have good times...life just drags me along with it and I could not say that I am living in doom and gloom all of the time...But...
There is an underlying sadness and pain that has become part of my life now that was not there before. Life does go on but after the initial shock and time following the funeral, this is the feeling that has moved into my life. Slowly, I am trying to learn how to live with that underlying pain. Sometimes, it hurts a lot, other times it is just a niggle but it is always there.
People always ask; "How are you?" and I am surprised how quickly the standard answer "Grand sure" seems to roll from my tongue. What else can you say? Aren't we "grand"...by and large? We are but these days that sense of loss and that pain, the longing for one more hug, the fear of forgetting, the realisation of "crap...this really did happen" is always there...Lurking behind each "brave" smile.
I don't think it is something that will ever go away.
I do not think it will ever hurt less.
I do think that we will get better at living with it.
But Christ...it does hurt.
Patrick
Eoghan
Time seems to go by so incredibly fast. When did that begin to happen? I still remember when time seemed to be in such plentiful supply...when summers were endless. When did that change?
Where are we now though?
A hard question to answer. Personally, I feel that a lot of the times, I am still in some sort of a haze. Days go by, I do what I do and what needs to be done. I laugh, I have good times...life just drags me along with it and I could not say that I am living in doom and gloom all of the time...But...
There is an underlying sadness and pain that has become part of my life now that was not there before. Life does go on but after the initial shock and time following the funeral, this is the feeling that has moved into my life. Slowly, I am trying to learn how to live with that underlying pain. Sometimes, it hurts a lot, other times it is just a niggle but it is always there.
People always ask; "How are you?" and I am surprised how quickly the standard answer "Grand sure" seems to roll from my tongue. What else can you say? Aren't we "grand"...by and large? We are but these days that sense of loss and that pain, the longing for one more hug, the fear of forgetting, the realisation of "crap...this really did happen" is always there...Lurking behind each "brave" smile.
I don't think it is something that will ever go away.
I do not think it will ever hurt less.
I do think that we will get better at living with it.
But Christ...it does hurt.
Sunday 15 January 2012
Time flies....
But apparently not only when you are having fun but also when you are grieving.
I cannot believe it will soon be one year. Where did the time go and if it flew like this for the first year, how quickly will we be 5 or even 10 years down this road? Life just continues to happen around us - but will that mean Patrick's memory will begin to fade as it does?
During the first year, everyone still makes an effort to remember the birthday, remember him at the first Christmas without him by our side....in this year of strange firsts.
How long before we will start to forget the little and the big things?
The sound of his voice. His laugh. The way he called us mammy and daddy. What he used to like. His giggle. The feel of his curls. The feel of his sloppy kisses. The intense, inquisitive look of his huge blue eyes. His smell. The fact he loved broccoli. The way he was good at jigsaws and liked animals. Small little incidents that were funny or cute.
How long before we go: "Oh...I had almost forgotten that he used to...."
Indeed, how long before he will slip as quietly out of peoples memories as he did out of this life? For sure, we, his parents, will never forget him. And deep down I know people around us will not either but he may not get mentioned as often and that might make him slip from everyday life once more.
It scares me. I don't ever want this to happen but I am afraid it will at some point. And maybe this will be normal to a point...
It makes me sad that his little brother will never truly understand who this person is that his mam and dad get so sad about and speak of so often.
The only way I think I have been able to get through this past year, is because my brain kindly detaches itself from the experience...like this is happening to another person and I am an onlooker; or I am looking at it as though I am watching a movie. Every now and then, there are moments where this does not happen; when the cruel reality of it really hits. Possibly as often and for as long as my brain thinks I am ready to.
Anyway...it will have been a year since Patrick's died on January 25th and my wonderful little boys brother will be 3 months old on that day. He was born precisely 9 months to the day. He was the reason our Christmas, though not easy, was not as difficult as it might have been.
He is the reason I continue to be able to get up in the mornings.
January 25th will not be easy. I am not sure what will happen on the day but I guess we have to take it as it comes...
His creche are planting a tree in Patrick's memory that day. Along with Patrick's patch on the wall in the main hall, this will be another nice way to remember him and make sure he is not forgotten.
Still...I miss him more than I could ever say. Life still is not the same and never will be again. It can still be good though...
I cannot believe it will soon be one year. Where did the time go and if it flew like this for the first year, how quickly will we be 5 or even 10 years down this road? Life just continues to happen around us - but will that mean Patrick's memory will begin to fade as it does?
During the first year, everyone still makes an effort to remember the birthday, remember him at the first Christmas without him by our side....in this year of strange firsts.
How long before we will start to forget the little and the big things?
The sound of his voice. His laugh. The way he called us mammy and daddy. What he used to like. His giggle. The feel of his curls. The feel of his sloppy kisses. The intense, inquisitive look of his huge blue eyes. His smell. The fact he loved broccoli. The way he was good at jigsaws and liked animals. Small little incidents that were funny or cute.
How long before we go: "Oh...I had almost forgotten that he used to...."
Indeed, how long before he will slip as quietly out of peoples memories as he did out of this life? For sure, we, his parents, will never forget him. And deep down I know people around us will not either but he may not get mentioned as often and that might make him slip from everyday life once more.
It scares me. I don't ever want this to happen but I am afraid it will at some point. And maybe this will be normal to a point...
It makes me sad that his little brother will never truly understand who this person is that his mam and dad get so sad about and speak of so often.
The only way I think I have been able to get through this past year, is because my brain kindly detaches itself from the experience...like this is happening to another person and I am an onlooker; or I am looking at it as though I am watching a movie. Every now and then, there are moments where this does not happen; when the cruel reality of it really hits. Possibly as often and for as long as my brain thinks I am ready to.
Anyway...it will have been a year since Patrick's died on January 25th and my wonderful little boys brother will be 3 months old on that day. He was born precisely 9 months to the day. He was the reason our Christmas, though not easy, was not as difficult as it might have been.
He is the reason I continue to be able to get up in the mornings.
January 25th will not be easy. I am not sure what will happen on the day but I guess we have to take it as it comes...
His creche are planting a tree in Patrick's memory that day. Along with Patrick's patch on the wall in the main hall, this will be another nice way to remember him and make sure he is not forgotten.
Still...I miss him more than I could ever say. Life still is not the same and never will be again. It can still be good though...
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