In Ireland, if you have a severely disabled child, odds are you will end up on social welfare – especially if you are a lone parent. Unable to work, and with there being little or no government provided care facilities, in home nursing option, or a combination of both, you find yourself leaving your career to become a full time carer. You lose your income, your chance at a pension, your chance of retirement, your chance of regular holidays, and your chance at being financially secure. You also lose that sense of self which comes with daily professional, adult interaction with your peers and work colleagues. You lose that mental stimulation which brings intellectual growth, positive mental health and a contentment with your well-rounded life. You become trapped in your home, often for days on end, caring for a child with profound needs, and no one can hear your cry for help. (If you are not a carer, and especially if you are in the government, I ask that you please read that paragraph once more, just to let it really soak in.)

What if…

What if Ireland adopted a program similar to one the state of Colorado in the US has for families with a disabled child? Let me explain their unique, but very progressive, program: If your disabled child is in receipt of medicaid (basically a medical card here in Ireland), you can choose to become that child’s paid carer by becoming a Certified Nursing Assistant (CNA). You will go through the CNA training course, which is the first part of a nursing degree, and must pass the state administered skills test to gain certification. Then you become an employee of one of the home health care agencies in your area. You will do everything that all the other CNA employees of the company do who are caring for non-related clients – you follow a daily care plan for the child, fill out timesheets, must attend annual CNA recertification courses, and so forth. It is an actual profession. You receive the going fair market rate of pay. You also do not get taxed on your income because your pay is from government funding as part of your child’s entitled care needs that are set out under medicaid. You do, however, get to pay into social security (ie: retirement pension funding). Your child’s SSI payment (Ireland’s DCA equivalent) does not count toward the medicaid financial means test, nor does your CNA income, so your child is not at risk of losing either medicaid or SSI.

What if Ireland adopted a similar program? Carers would be able to financially contribute more to the economy. Carers would be able to continue building their CV by being actual employees of a health care provider with an actual profession. Carers would be able to have financial security, and the all important security of a growing retirement pension fund. As such, carers would be a more active contributor to the economy, rather than “mere social welfare recipients”, and would also be less dependent upon the government when it comes time to retire because our pensions would be building via our employment contributions. Also, from a governmental perspective, this program saves the state of Colorado millions of dollars annually because rather than them paying full nursing wages for the care of the disabled child, they pay CNA wages, which are about half that of a nurse’s wage. This is only one idea, one suggestion. There are many to be considered.

There is another aspect of this entire scenario, and that is respite. Carers MUST also receive respite on a regular, appropriate and individualised basis that suits their particular situation. Currently, that simply is NOT happening in Ireland.

Carers, such as myself, are drowning in a forgotten (or is it ignored?) mire of struggle. 

I recently wrote a piece about caring, and how Carer’s Allowance and DCA equates to receiving €1.64 per hour considering we carers work 24/7, 7 days a week. This is no exaggeration, let that be heard loud and clear. I wonder who in their right mind would accept a position working those hours, especially at that rate of pay and with zero security for the future? Frankly, I cannot think of anyone who would. We carers do it because 1. We must, and 2. We love our children. THIS is what the government is counting on. They know we are backed into a corner.

I ask this question: What if we carers went on strike, such as the nurses, bus drivers, luas drivers, Tesco workers, etc? What if we…the thousands of us across this great island of Ireland…one selected day all took our precious disabled children into our local A&E departments and said “Here, you handle it. I’m on strike.”

No, of course we would never do that, and again, the government knows that we won’t. 

So, we carers sit huddled in our backed into corner; we drown in the mire; all while caring for the most fragile of citizens in Ireland. But, and this is a very important point, we are becoming very united in our voice calling for reforms, fairness, equality and help from our government. I have never met a more passionate, strong-willed group of people than special needs parents. We are like the sleeping momma bear that wakes in anger when she realises her cubs are being attacked.

I would like the powers at be to actively engage with us – the carers of this country – about the much needed reforms in this area, and then actually take action on those fair reforms. 

 

 

My son Brendan Bjorn is profoundly disabled. He is profoundly deaf in one ear. His care needs are profound. Profound is a word some within the special needs community don’t like to hear. They feel it somehow labels or degrades. It does not. It is a descriptive word that clarifies the level of something. In my son Brendan’s case, profound describes so many aspects of his life and his needs and his challenges.

This week, his profound became more profound. 

For the first time in his 12 years, Brendan has developed 2 pressure sores. I suppose it was only a matter of time, but this has sent my head reeling. He only has 2 positions he can be in because of his many physical and medical issues that have progressively grown worse over the past couple of years.

LET THAT SOAK IN. HEAR WHAT I SAID. 

HE HAS TWO POSITIONS HE CAN BE IN.

I repeated that because even within the special needs community, there are parents who don’t truly grasp the fragility and complexity and dare I use the word – PROFOUND – level of care concerns Brendan faces. And in that lack of understanding, comes a lack of empathy, yes, even from other special needs parents. Some people just don’t get it. They don’t get that my son now has to take 3 and 1/2 hours just to finish one pump feeding of formula via a peg and that during that time, he can’t be moved or he will vomit because in August 2015, his GI system started the heartbreaking path of refusing to do what it needs to do. They don’t understand that every time I change his nappy now, he begins to gag and often ends up vomiting all over his bed because, you see, if he has soiled his nappy it takes just that few minutes too long to clean him up and his system no longer allows him to lay flatter than 45 degrees. They don’t understand that I can’t just “run down to the shop” to get that bottle of Calpol or litre of milk when I’ve run out because that means stopping the feed, waiting for his gut to settle enough to dress him, then put him in his wheelchair, then loading him into the van…and a good hour or more later, finally go the 7 minutes into the village or 15 minutes into the town.

They just don’t understand how profound the entire situation is as a whole. Not many people truly understand – not even many of my friends. And certainly not the politicians who are leaving children, like my son, to suffer on long waiting lists and without proper care; leaving carers, many of whom are also lone parents like me and have no one to lend a helping hand, to barely carve out an existence in what once was a full life.

Why don’t they understand? Because they don’t live it.

And I think because they really don’t want to know about it. 

This latest, new issue of developing pressure sores is quite serious. I fully understand what this could mean for him, the restrictions it may place on him until these sores are dealt with, and if any more develop again. Time in his wheelchair being restricted will mean not being at school. It will mean being here at home in his bed with me trying to reposition him ever so slightly as I contend with his left (partially dislocated) hip, his right (bone rubbing on bone) hip, and that all too troublesome GI system of his. And I fully understand what this could mean for me, the exhausted lone parent carer still fighting for respite, as he is restricted even further.

The changes are certainly profound.

 

Ten years ago, I began to fight publicly for disability rights, CMV (cytomegalovirus) awareness, and special needs advocacy as a whole. I established a non-profit charity that had nationwide campaigns across America and supported funding for CMV vaccine research. We networked across the globe in our awareness and advocacy efforts. All the while, I was a single parent to 2 young boys, one of whom (my son Brendan Bjorn) was severely disabled, with fragile, complex, and profound medical care needs. Behind the scenes I fought for my son’s rights to proper medical care, timely and appropriate services and education, against a bureaucratic machine hell bent on running me over any chance it got.

Ten years on, I am still fighting publicly for those same causes. And while the charity I established was dissolved in 2015, I continue to work on public policy and rights campaigns here in Ireland. I am still vocal, involved, and put myself in the public eye in order to facilitate positive reforms. And yes, I am still a single parent to 2 young boys, one of whom grows more needy, more fragile, and more complex in care every year. Behind the scenes I continue to fight for my son’s rights to proper medical care, timely and appropriate services and education, against a bureaucratic machine hell bent on running me over any chance it gets.

If I sound like I am repeating myself, that’s because I am.

Despite the many years of fighting, both publicly and privately, not much has changed. I still fight the good fight, once tirelessly, but now reaching for the white flag to sheepishly raise above my head in resignation. I don’t want to give up the fight – truly I don’t. But how am I supposed to keep fighting for national reforms or international awareness or providing experienced advice to others when most of the time I can no longer muster up the will to fight for myself?

I am left wondering:

• Why does no one fight for me? Am I not worth it?
• Who is fighting for Brendan Bjorn, and all he needs, other than me? Is he not worth it?
• What happened with the once compassionate world that now it no longer will stand in the fighter’s corner in support of a single mother while she once again jumps into the ring? Are others no longer worth it?

 

These are questions I believe we should all think about with compassionate reflection, both inward and outward.

 

 

Valentine’s Day. While I have no romantic love in my life currently, I do have the most pure, strongest, passionate type of love imaginable: The love of a mother for her children.

As I watched my youngest son riding his bike down our road heading toward his school, I was overcome with tears and emotion. His strawberry-blonde, golden eyed, freckled face smiling back at me. My God, I thought, I love that little boy so very deeply…and one day it won’t just be me watching him riding his bike to school, it will be me watching him go off as a young man into the world for himself. And then the tears really flowed.

He holds my heart. 

Five minutes later, the van arrived to pick up my older son, Brendan Bjorn, my son who is severely disabled with profound medical care needs and has a life-limiting condition. I stroked his hair before I put his hat on his lovely head, and he looked up at me with that smile that lights up my world. He doesn’t have words, but none were needed. He loves me and through his eyes he told me so. My God, I thought, I love that little boy so very deeply…and one day it won’t just be me watching him leave in a van to school, it will be me watching him go forever as he gains his angel wings and transcends the confines that cruelly restrict him now. And then the tears really flowed.

He holds my heart. 

Valentine’s Day. I have my own struggles to be sure, as the life of a full-time, lone parent carer is anything but easy. But I also have love, and it is Because of Love that everything is made worth doing. All the struggles, the sacrifices, the fights for services, the tears, the pain – it is all done Because of Love.  And if I can give back to my two sons even a fraction of the love they give to me, than that is more than enough to fill my heart.

They hold my heart. 

 

Carl Jung said, “One does not become enlightened by imagining figures of light, but by making the darkness conscious.” My unconscious has had very dark places to delve into lately. This is me delving into the darkness.

This is me making the darkness conscious. 

Today I read an article about young, first time homebuyers camping out in their cars for a night or two all in order to be the first ones to buy these new houses coming up for sale. One of those hopeful buyers referred to herself as “exhausted and sick” from having to make the all too conscious choice to sleep in their car so they could buy a home for over half a million euros. Well, I didn’t take to lightly to the story. In fact, I was really quite annoyed and let it be known as I replied to the newspaper’s story on Twitter. And I said as much on my Facebook wall. A couple of friends called me out on it, telling me I was being harsh. Was I being harsh?

Delving into the darkness.

Yes, I probably was being harsh, though part of me (maybe the part that isn’t ready to come into the light?) still feels they had no right to whine about being exhausted…because don’t they know how exhausted I am? No, no they don’t. And they probably haven’t a clue what this life journey I am on entails. I thought more and more about it this afternoon and I realised, that the smiling “exhausted” couple in front of that shiny big house could be only one pregnancy away from being on this same journey as I am…and I do not wish it on anyone. While my son has given me and taught me more than I could ever imagine, truth be told it is damn hard at times. Most times. Like when you see a couple buying a huge house and you are stuck in a small rental with no security whatsoever living month to month just waiting, wondering, worrying…and there is darkness.

My son is palliative. His life expectancy is short. So short, in fact, I know it could be tomorrow or it could be five years from now, although that isn’t likely. But, barring an early death on my part (God forbid), I know that I will be the sole person to care for him for the rest of his life. Me. Me alone. And that is exhausting just to think about, let alone to actually do. When you know what you are doing is, for lack of a better word, temporary, you can’t help but think what will you do afterwards. When will it happen? How will it happen? What will I do then? Will my body be so wrecked by then that I can’t work? Will I even find work after so many years as a carer who has set her career aside? What, when, who, how, why, where…and there you have one of the reasons many of us suffer from anxiety, along with depression…and there is darkness. 

I truly am not a negative person. Truly. Yet today as I read that article of the exhausted couple, I was negative. I don’t like that I was. I disappoint myself when I am. But I understand why I can be that way. It doesn’t make it right, it just means I do reflect and realise when I need to take a step back, reflect even more, and delve into my darkness. There is plenty to delve into, I must honestly report: Envy at seeing other special needs parents get extensions on or wet rooms put into their homes; seeing friends go on holidays, carefree and able to see the sights without any restrictions at all; seeing the world pass me by as I stumble along on this journey of caring for my precious son who I will one day lose but for whom I must remain happy, strong, and present.

Oh yes, there is plenty of darkness to explore. There are two monsters I find most often hiding in that darkness. One is fear. The other is pain. I don’t think I need to explain either of those as it is pretty evident why they exist on a journey such as this one.

But here is where enlightenment has the opportunity to shine. I understand that fear. I understand that pain. And by recognising, acknowledging, and owning them, the darkness begins to give way to the light. It won’t be my last trip delving into the darkness, no. But no matter, so long as each time I find my way through it and into the light.

“Even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness.” Carl Jung

I haven’t left my house in the past 7 days. Well, other than taking out the rubbish, dragging in the recycling bin from the street, and checking the post box hanging on my gate. I’ve been quite ill. Then, both of my sons picked it up. And since then, it has been a matter of making sure Brendan Bjorn, first and foremost, doesn’t end up in hospital. So far, so good, although last night I thought that is where we were headed as his fever reached 39.6C. We are still home, and school is being missed, but that is better than being in hospital.

7 days stuck inside while ill gives one plenty of time to think. 

Caring full time for a severely disabled, medically fragile child is indeed a lot of work. I would challenge anyone to tell me otherwise. Even our elected government officials admit that the carer’s work is invaluable. But here is what I want to ask: Just HOW valuable is the work we do? The 24/7 nursing-level duties which require us to be always hyper vigilant, always ready to handle the next emergency, always monitoring…always caring.

How valuable is the work we do? Let’s talk numbers:

If we are to take the DCA (Domiciliary Care Allowance) figure, our work for a severely disabled child under age 16 is worth €309.50 a month. That is €3,714 a year. Now consider Carer’s Allowance, a MEANS TESTED payment for those caring full time for a disabled loved one. IF you qualify (again, this is a means tested payment, no matter the hard work you are doing as a carer), you can be eligible for up to €204 a week. That is an annual total of €10,608. So, if you get DCA and Carer’s allowance, you are paid a total of €14,322 a year to do backbreaking, 24/7, no time off, nursing-level work caring for a severely disabled child. Let’s break that down and put that annual figure into a frame of working 40 hours a week (though as I’ve said, we work 24/7, so this 40 hour a week number is beyond lacking). 40 hours per week, 52 weeks per year (because we don’t get holidays), equals 2,080 hours of work per year. Divide that into the annual “social welfare” for our hard, endless work, and you come up with €6.88 per hour.

I wonder, as I look at that €6.88 per hour number, would there be a nurse in all of Ireland who would accept that rate of pay? Oh, but they mustn’t forget that, really, they will be working a 24 hour shift, not a tidy 8 hour day. Oh, and that it IS 7 days a week. Your hourly rate of pay? Yes, it did just change considering those hours. Did you catch that? But sure, you wouldn’t mind working for €1.64 per hour on a 24 hour shift, would you?

Don’t forget the no holidays, no sick time off, no overtime or holiday pay differential, no scheduled 1 hour lunch break and no required 20 minute tea break every 4 hours or so. When you get a chance, yes, you can surely grab a bite to eat and make a cup of tea, just don’t expect it to be written into your work schedule. Those aren’t in this work contract. Union to protect your worker rights? Don’t be silly, now. And whatever you do, don’t even think about a retirement pension plan. There is none. You shall live day to day, on €1.64 an hour for all your work, with no security for your future.

You, after all, are “just” a carer, hidden away in your home, daily charged with the most important of responsibilities – that of keeping a medically fragile, disabled child ALIVE. For that, €1.64 an hour.

As I said above: 7 days stuck inside while ill gives one plenty of time to think. 

I know what I think. I think we deserve better.

We deserve pay commensurate with the workload and work hours. We deserve to be able to afford a new accessible van when our 10 year old van begins to break down (yeah, that’s mine). We deserve to have a secure future and retirement plan with a pension. We deserve to be able to get on the property ladder, owning our own home (but can’t because no bank would ever loan to a single mum on “social welfare”). We deserve to not become disabled ourselves as we unimaginably strain our own bodies as we care for our disabled child. We deserve to not be resigned to financially existing just day to day, unable to plan for our own future, let alone for any time off. We deserve to also be able to provide for our other children, those often forgotten siblings of the disabled child, for they too are carers and they deserve the world.

I dream of buying a house that I could then utilise the home modification grants. Instead, I rent, unable to make accessible modification, having to fundraise money to try and purchase an appropriate, safe ramp system into the house. Instead of having a proper wet room, I have to set my disabled son onto an unstable shower chair sitting precariously in the bath tub, lifting him in and out and carrying him from his bedroom to the bathroom and back again.

I dream of being able to afford, with proper pay, trading my old van in for a newer, automatic transmission accessible van so that I can freely, without any hesitation, take my sons out into the world, as they both so deserve, without any worry or pain. Instead, we don’t drive more than is required, as the van I currently have is a manual transmission and I need surgery on my left foot which can’t possibly happen because of the many months recovery time. Carers, especially lone parent carers, simply cannot do that. So, when I drive, I drive in pain.

7 days stuck inside while ill gives one plenty of time to think. 

Maybe I need to stop dreaming.
Maybe I need to stop thinking so much.
Maybe I just need to be quiet and keep my head down and get back to  my work of caring for €1.64 per hour. 

 

I am a carer. I wasn’t always a carer, although I have always had a caring nature. I care about people, about the environment, about the world as a whole. I care about justice, equality, fairness and peace. Nowadays, though, I am a different kind of carer. I care full time for my eldest son, Brendan Bjorn. I still care deeply about the other matters, but my energy must primarily be directed toward caring for my son. Strike that. Toward caring for BOTH of my sons.

I sit here, midday on a Tuesday, with my youngest son laying on the couch next to me. On the other side of me is the video monitor keeping a close eye on Brendan Bjorn. You see, they are both sick with high fevers, body aches, and respiratory issues. They came down with this nasty bug yesterday, having picked it up from me. I was very ill all weekend, struggling to do what needed to be done to care for both of my boys as a lone parent…and I am still sick. This weekend, as always, there was no one but me to care for them, and for myself. 39.5 fever be damned, it had to be done. There were a number of people who knew I was very ill, but no one reached out with offers of help, and that leaves me wondering why.

What happened to caring?

Last night,  there was a television show on highlighting the shamefully long waiting lists within the health service here in Ireland. The response I’ve seen on Twitter has been one of great public support for those families who are waiting – especially those with children who are suffering while they wait endlessly in pain. The outcry from the public shows genuine caring. The response from the government attempts to show caring. My concern is, there have been numerous reports on these appalling waiting lists and similar public outcry previously, all to no avail. Same story, different day. Will this just be story of the week or will it continue to touch people’s hearts and drive them to actually demand health system reform? My fear is it will soon be replaced with tomorrow’s breaking news.

At that point, I will ask again, what happened to caring?

When I first moved to Ireland, 22 years ago, it was a much different country. The people were different as well. Now before anyone gets too annoyed at me, let me say I have yet to say this very thing to anyone here and had them disagree with me, especially older people. Strangers could sit down at the table with you at a fast food restaurant and it was normal…even provided some good craic. The neighbour lady would leave fresh baked scones and brown bread at my door for me and the boys…that was some fine Cork baking! You didn’t have to ask for help often, because if someone knew you were in need, they would see to it without asking. That was real community. That was caring.

Today, there is an air of indifference, a disconnect from the sense of community that embodied the spirit of Ireland of old. It is slipping away. Apathy is replacing it. People are busy focusing on their own lives to the point of not really being bothered to help those around them. Not always, mind you, but much more so than in years past. I wonder if this is why the government seems to have that same apathy toward issues like waiting lists and children suffering, or do the people have the apathy because the government does? Which came first, the chicken or the egg?

I had a fellow carer mam send me a private message asking if she could do anything for me today. It meant the world to me for her to ask! She was the ONLY one to contact me offering that much valued help. And we have never even met! As she lived over 30 minutes away, I instead turned to a neighbour, who happens to also be a carer, but whom I knew would probably be in the village and could pick up the needed items. As she has been before, she was there for me, quick to provide the help.

Is it only carers that understand when another carer is drowning? Is empathy a thing of the past? Does it really take having walked in the same shoes for someone to understand that the person they see before them is in need? I say NO. I refuse to give up hope.

Open your eyes and see those near you. Does the empty bin of the old man next door need brought in from the street? Do it. Would the single mam next door to you enjoy an invite over for a cuppa while her kids are at school? Ask her. Remember what it is like to have that sense of close community.

Reach out.
Don’t let apathy win.

I don’t want to wonder, what happened to caring…

 

Somedays I feel like there is only part of me left, the other part of me having disappeared somewhere along the way during the past 12 years. People have asked me how I keep going on this journey with my son Brendan Bjorn. I usually don’t have an answer. I hesitate. I joke about it being coffee and chocolate that keeps me going. I then end up saying LOVE.

It is love that keeps me going. 

Somedays I feel like I can do anything and everything, energised with that love that keeps me going and able to single-handedly care for Brendan Bjorn and his brother Declan, and still have the energy to work for needed changes in the world of disability and carer rights. Again, it is love that keeps me going.

And coffee and chocolate. 

Somedays, like today, I wonder about both the past and the future. Sitting here on a cold, wet Irish evening, with the sitting room fire going and Brendan in his wheelchair next to me, I take this quiet moment to reflect. What of the future? What of the dream to once again own a house and know that we won’t again be at the mercy of a landlord wanting to sell “our” home or raise the rent? What of the feeling of peace and contentment in knowing you are truly home – your own home – and this is IT? Once, in the past, I knew that content, peaceful feeling of owning my own home. Now, today, I doubt it will ever happen again because as a full time carer, I am embarrassingly relegated to attempting survival on meagre amounts of social welfare while working myself into exhaustion.

And…my heart breaks at the thought of that dream, like so many others, being lost because the work I do is not valued by most in society.

As I sit here this evening, I think of two of my ancestors who inspire me to continue working for the greater good. I like to think these two continue to guide me, energising me to fight the good fight and to not give up. One was Arne Fjellbu, my 1st cousin twice removed. A Lutheran priest in Norway, he was expelled for boldly speaking out against the Nazi regime there and for being part of the Norwegian Resistance. After the war, he returned to Norway, becoming Bishop of Trondheim, performing the consecration of King Olav V, and continuing for years to bring progressive reforms to the church. Another was my Grandfather’s grandfather, Turlington Walker Harvey, who was an inventor and businessman in Chicago, eventually working his way to becoming a multi-millionaire. But, it is what he did with his fortune that inspires me. When the great Chicago fire happened, he used his personal funds to help rebuild Chicago, at one point building 400 homes a day to aide the some 100,000 residents left homeless. Yes, they do indeed inspire me, just as my two beautiful sons inspire me.

They are all part of me.

And so, I feel a bit more empowered. A bit less hopeless. A bit more hopeful. There are dreams that are dying, like that of owning my own home again, but I will continue to work on finding new dreams. I think one must find new dreams to continue on this challenging journey with a disabled child who has a life-limiting illness. We must.

Maybe, just maybe, there is more than only part of me that is left after all.