Compassion literally translates from Latin to mean “suffering with” or “co-suffering.”

It is just 3 days until Christmas and as I read the latest news on Twitter (where you can find me most days), my heart aches at all the pain and suffering, not only here in Ireland, but across the world. Some days, it is simply too much and I can’t bear to look. But some days, like today, I dare to look…and on these days I come away wondering what happened to compassion within society. I know I’ve written about this subject before, and I regretfully say I will probably be compelled to write about it again. Not until those with no voice are heard will I stop raising mine. (There, you are now all forewarned!)

Someone on Twitter this morning replied to me on a tweet and said “That is one of the reasons you are such a powerhouse of a woman and mum…” Wow! I have to say that comment had me in tears! I’m not sure I’ve received such a compliment in a very long time. And it got me thinking, am I really all that different than other people? If so, why am I? Or better yet, why aren’t more people fighting for what is right, just, and fair? Why aren’t more people speaking up for those who cannot?

Why don’t more people have compassion?

I don’t have the answers, only thoughts on it. Too many thoughts on it for this short blog. I’m reminded yet again of my 2x great grandfather, a self-made millionaire, who used his fortune to house the tens of thousands of homeless after the great Chicago fire and to then rebuild the city. He goes down in the books of history remembered as a man of tremendous character and great compassion. In remembering him, my pride is entwined with frustration over those people with that level of wealth who don’t step up and simply do the same today. It would be so easy to do. But they don’t because they are self-centred and lack compassion. Full stop. 

Christmas is in 3 days. My precious angel Brendan Bjorn today is on day 59 of being bedridden with a pressure sore. It is healing, thankfully, and I will plan to put him in his wheelchair for a short time on Christmas morning so he can gather with our little family by the tree and enjoy watching his brother Declan open the presents. And I will remember the kindness…the compassion…so many people have showed my family this year as they gave to us so we could have a safe, reliable wheelchair accessible van and who have recently sent gifts to the boys for Christmas.

These are the people that give me the best gift of all: The gift of hope; the gift of knowing compassion still lives in the heart of many. Thank you, all of you, for these most beautiful of presents possible. 

Happy Christmas and God Jul to all of you reading these words. May your lives, your heart, and the New Year be filled with much love and compassion for all those you meet.
Blessings to you all. 

Today is December 13th, my birthday. Let’s just say I’m 39…again. Somedays I feel 25. Other days I feel 105. When it comes to numbers, the number attached to my age isn’t important today. There are, however, some numbers that are very important to me today 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 3rd 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!).

12: The number of days until Christmas…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; a day I will focus solely on the gifts I have: my 2 beautiful sons.

But for today, it’s my birthday…and there are far too many numbers on my mind.

 

 

Tomorrow, December 9th, will mark 100 days out of 342 so far this year that Brendan Bjorn has spent bedridden due to a pressure sore. 100.

Tomorrow will also be the 45th day in a row he has been bedridden this time around, which is the 3rd time this year the same sore has opened up.

Each time, the sore gets worse. 
This time, it reached the point of a grade 3 pressure sore.

Earlier this week, Gerry Adams (Sinn Fein TD for County Louth) addressed the Dail regarding the plight of carers. In that presentation, he mentioned my precious Brendan. It brought tears to my eyes to see a TD finally bring this situation up before the government, and I have much appreciation for Gerry having done so.

The reply from the Taoiseach, however, left much to be desired.  

I sat there with my mouth open (well, when I wasn’t throwing out a few expletives, that is) as I listened to the Taoiseach throw out verbal jabs at other political party members while then rolling off a list of numbers for home help hours and respite – including the illusive night and weekend respite – that “we” (ie: the government) provide to carers. That left me with a number of questions:

• Where are those 160,000 respite nights per year given and to whom?
• Where are those 2,000 holiday respite placements given and to whom?
• Where are those 42,000 respite days given and to whom?
• Does he mean via charities that the government helps fund?
• If so, why then do those charities have to constantly fundraise just to be able to provide such respite, which is very limited to say the least?
• If those figures he mentioned really are so boast-worthy, than why aren’t there overnight/weekend respite facilities in every county across Ireland that are equal of quality and facility as LauraLynn (the only Children’s Hospice in the entire country)?

I heard phrases such as:

“…hope on the horizon that they’ll get an evening off or a weekend off”
“…the possibility of being able to carry on knowing there’s a hope that they might get respite”
“…5 million extra is being provided for housing modification grants”
“…a 5 year increase in Carer’s Allowance”

• I don’t want hope on the horizon. I want hope right now, right here, today.
• I need more than an evening or a weekend off. I’m only 1 person and this job is 24/7. I’m sinking.
• I don’t want merely a possibility of being able to carry on. I want proper services to assure that I will indeed be able to carry on caring.
• I can’t use a home modification grant when I can’t afford to buy my own home because I am a full time carer relegated to “social welfare” with no hope of saving for my own home, let alone having a secured retirement and a pension.
• Any meager increase in Carer’s Allowance will not save me, or any other carer, from the often inhumane situation we are left alone to struggle through. It isn’t five euros more we need, Taoiseach.

The hashtag currently on Twitter is #carersincrisis and it is fitting. We are in crisis, and the thing about that is it puts our loved ones, for whom we are caring for, in crisis too. I don’t think the government fully grasps this all-too-frightening consequence.

100 days and counting.
My beautiful son has spent nearly one-third of 2017 in bed because of a pressure sore. It’s been over a week and still no word from the county’s tissue viability nurse to even set an appointment for her to come examine him despite it all.

There is so much wrong with the state of things.