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Caring at Christmas '24: The number of hours I work per day'

When it comes to numbers, the number attached to my age isn’t important. There are, however, some numbers that are very important to me, writes Tracy McGinnis.

IT WAS MY birthday recently. Let’s just say I’m 39 again.

Some days I feel 25. Other days I feel 105.

When it comes to numbers, the number attached to my age isn’t important. There are, however, some numbers that are very important to me so I’ll list them here for all to consider.

50: The number of days Brendan Bjorn has been bedridden due to his pressure sore opening back up for the third time this year.

104: The number of days so far this year that Brendan Bjorn has been bedridden in total due to that pressure sore.

2: The number of days Brendan will be in overnight respite at LauraLynn starting tonight while Declan and I spend my birthday away for a couple of days.

15: The total number of nights I get off per year via respite at LauraLynn Children’s Hospice.

0: The number of in-home respite hours I’ve had in the past 5 months.

24: The number of hours I work per day.

7: The number of days per week that I work.

0: The number of retirement pensions I have to look forward to.

9: The number of years since I’ve been able to work in my professional career field.

2: The number of weeks I’ve been waiting for the county’s tissue viability nurse to ring me just to set the appointment to come out and examine Brendan’s pressure sore.

1: The number of days Brendan Bjorn has made it to school this school year.

30: The number of days since I rescheduled Brendan’s spinal fusion assessment with a promise they would ring me back that same day to reschedule, but with no word since.

6: The number of months since Brendan was placed on the “urgent” spinal fusion list, which is to be no longer than a 4 month wait.

1: The number of years I’ve been trying to find a suitable rental house via HAP that will fit all of Brendan’s special care requirements, but with no luck at all.

1: The number of years the boys and I have been stuck living in an unfinished, unsuitable, unsafe, unregistered house on the private rental market.

2: The number of rental houses I will go view today, again hoping to be selected for the crumbs of an insecure tenancy lease in what will obviously not be a forever, stable, fully suitable or modifiable family home for my boys.

1,100: The number of euros it will cost each month to rent one of the above mentioned houses (but this one actually has a wet room and a ground floor bedroom!).

3: The number of days until New Year’s Eve: A day I will set aside all of these worries; a day I hope Brendan’s pressure sore will be healed by so that he can be taken out of his bed and brought into the sitting room to watch his little brother around the Christmas tree. And a day I will focus solely on the gifts I have: my 2 beautiful sons.

Tracy McGinnis is a lone parent to two sons, aged 13 and 9. Brendan Bjorn (13) is severely disabled, medically fragile, and has very high palliative care requirements. She works 24/7 as his full-time (unpaid) carer, having had to give up her career as a professional child and family counsellor to care for Brendan. In her blog, Transitioning Angels, she writes about the journey of caring for a fragile child like Brendan. She is active in the special needs community in Ireland, working for reform in services, supports, and care for children with disabilities, and for their family carers. 

Civil servants: ‘Men are twice as likely to occupy senior positions as women’>

Jackeen: ‘A fellow who does very little for a living, and wants to do less’>

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    Mute Gavin Lawlor
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    May 23rd 2012, 1:50 PM

    Who’s more dishonest?

    Prisoners or the ones they’d be voting for?

    33
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    Mute maurice frazer
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    May 23rd 2012, 3:11 PM

    It seams like prisoners have more rights than their victims

    25
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    Mute Nick Beard
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    May 23rd 2012, 3:24 PM

    If you read the judgement, the ECHR (not the Court of Justice in Europe, by the way) objects to a blanket ban on all prisoners voting. They agree, in principle, that some prisoners can be banned, but not all. So I’m not sure how you’re arguing that a mugger has more voting rights than the victim or a drug dealer has more voting rights than a drug user.

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    Mute Ciaran Kelly
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    May 23rd 2012, 3:45 PM

    They’ll have more voting rights than everyone who’s been forced to emigrate. Commit a murder and you get to be involved in shaping a government?! Enforced emigrants can’t vote from abroad so can’t help reshape the government that caused their exodus. Something’s wrong with that picture.

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    Mute Nick Beard
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    May 23rd 2012, 3:50 PM

    If you read the judgement, you would have noted they don’t say it has to be extended to murderers, simply that a blanket ban against all prisoners is disproportionate. What about those serving minor sentences?

    I think it would be really interesting for Irish emigrants to take a case to the ECHR, however. It’d be a good case with these precedents.

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    Mute maurice frazer
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    May 23rd 2012, 3:01 PM

    Even more reason to leave the EU

    19
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    Mute Nick Beard
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    May 23rd 2012, 3:19 PM

    The EU and the European Convention of Human Rights are two separate organisations.

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    Mute Damocles
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    May 23rd 2012, 3:23 PM

    Nick, EU Membership requires accession to the ECHR.

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    Mute Nick Beard
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    May 23rd 2012, 3:25 PM

    Do you think he was referencing that distinction or that he had confused the two? I’m betting on the latter….

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    Mute Damocles
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    May 23rd 2012, 3:36 PM

    I’m more inclined to give him the benefit of the doubt.

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    Mute Nick Beard
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    May 23rd 2012, 3:41 PM

    You’re clearly less cynical than I am. :-) Regardless, I do think there’s a lack of understanding of the distinctions between the two and it’s important that when we’re talking about it, that it’s clearly pointed out what the ECHR does and what the Court of Justice of Europe does.

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    Mute Damocles
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    May 23rd 2012, 3:02 PM

    How far can the ECHR go in interfering with the way countries are run?

    Surely suffrage is a constitutional matter.

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    Mute Nick Beard
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    May 23rd 2012, 3:22 PM

    I don’t believe that prisoners voting is mentioned in the Italian constitution (certainly not in the UK). I heard the arguments being made on behalf of the prisoners and it was quite compelling – the idea that when politicians (not constitutions) define who should be able to vote, it’s a dangerous concept of democracy.

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    Mute Damocles
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    May 23rd 2012, 3:41 PM

    Suffrage is generally granted by the state. Should it be imposed from above?

    And the UK doesn’t have a written consitution it has a history through law.

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    Mute Nick Beard
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    May 23rd 2012, 3:48 PM

    It seems it comes down to how much you believe that voting is a human right and how much you think it should be a sovereign matter. Considering that voting has typically been denied to women and minorities in a lot of states, I view it as a basic human right (of course, I’m in the minority that believes children should be able to vote, so I doubt I’m representative of the whole populace).

    If you perceive voting as a basic human right, this judgement makes a lot of sense. You don’t seem to view it as a right, but as something which states can legitimately deny portions of the population.

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    Mute Damocles
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    May 23rd 2012, 4:25 PM

    Sorry, I’ve been agog since I read that you want kids to vote.

    They can’t decide whether they want sausages or fish fingers for dinner but you want them to elect governments.

    Mad. As.

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    Mute Nick Beard
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    May 23rd 2012, 4:55 PM

    I believe in pure democracy. But I don’t think they can do worse than some other voters in Europe!

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    Mute Damocles
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    May 23rd 2012, 5:28 PM

    Diluting the franchise doesn’t strengthen it, unless you believe in homeopathy.

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    Mute Nick Beard
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    May 23rd 2012, 5:30 PM

    I don’t know what that comparison is about, but if you argue that you believe in universal suffrage, there should be no exceptions. But then we’ve already established you believe governments should be able to take the vote away from people without any form of oversight.

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    Mute Damhsa Dmf
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    May 23rd 2012, 5:50 PM

    I also would love to live in a society governed by pure democracy but could only ever work if everyone was informed on what they have the power to vote on, take for example some people I’ve meet recently who plan on voting yes, they can only reiterate what the TV told them about “stability” and future bailouts. They hadn’t the foggiest clue what I was on about when I mentioned my concerns and skepticism over certain articles of the treaty or our relation to the ESM if we ratify it what it means to vote Yes and our then commitments, they switch off and say “ah but shure the Gov. are looking for a yes so we can get more money and the no are a bunch of shinners and out from the fringes as usual”

    These people who wont go to the bother of looking into what they been asked to make an informed decision and vote on are dangerous, and a sad byproduct of democracy led by laziness and persuasion when they will vote the way they are told if its repeated enough times and made sound the safer option between the ads for Eurovision.
    Even though they will not question the accuracy or merits of what they are taking as positive points.
    This can be said for people who vote the other way also mind, but since the Gov are pushing these things in a certain direction pure democracy has little chance of achieving its true potential of everyone in society making a valid contribution through their informed decision when real assessments and clear wordings are absent and drowned out with garbage, garjon and scaremongering.

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    Mute Sheila Byrne
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    May 23rd 2012, 6:51 PM

    My understanding of an individual being punished for crimes committed means ‘no rights to anything that is happening in the outside world. Did the crime – do the time!

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    Mute Bríd Ní Laoithe
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    May 24th 2012, 8:18 AM

    It is in my opinion that if you are in prison for committing a crime you forfeit your right to vote until you are rehabilitated and released!

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    Mute Brian Walsh
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    May 23rd 2012, 7:06 PM

    Next thing you know they’ll expect the jails to let the inmates nip down to their local voting centres, “of course we’ll be back, honest g’vnor.”

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    Mute Chris Whyte
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    May 24th 2012, 1:21 AM

    Sinn fein will be thrilled!

    1
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