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!
Thursday 31 May 2012
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!
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