The power of words

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It’s a bit cliche to say words are powerful. We all know that they are, as we’ve all felt the joys and the pains that one simple sentence can bring to us. But this morning, as I sit here watching the storm roll in, I am again struck at just how powerful words can be.

Words can bring us to our knees.

Last night, I was speaking to someone who has known me since I was a child. I love this person who has been there for me nearly my entire life. As time would have it, the filters of what one should and shouldn’t say are long removed – and with being in one’s late 70s. We were discussing my housing situation and with that came this: “I’m sure glad I worked all my life so I could afford to buy my own home.” I dropped to one knee. I said, “But I do work.” The reply came, “Oh, did you get a job?!” No, I said, I’m talking about caring for Brendan 24/7, you know, how I work saving his life every single day? And then I dropped to my other knee with the last comment of our housing discussion. “Oh that. I thought you meant you got a real job.” I was hurt, although I know I should have a tougher skin, but I simply don’t. The conversation moved on and I was asked if I was a “fatty patty” now. I think I went from my knees to my ass at that one, to be quite blunt. Yeah, that’s me, stuck inside often for days on end caring for my son with a life limiting illness, not “working” but instead comfort eating and am now fat. I AM trying to better my health. Thanks.

Words can bring blessings.

Last week, through my words and the subsequent follow up words of Ray D’Arcy – actually all week long! – today we are less than €1,500 from being able to buy the new, safe, reliable wheelchair accessible van for Brendan Bjorn! I could not have done this without Ray’s help, and without the tremendously kind and generous donations of the public! These lovely people realise it takes a village, and for that I am forever grateful! THANK YOU!!!!

Words can bring bittersweet memories of what once was.

This morning, as with most every morning, I logged onto Twitter as I sipped my coffee. As I checked my notifications, I saw a tweet from a doctor that I had worked with since 2008 on my now dissolved CMV Foundation. The tears streamed down my face as with only a few sentences the power of his words reminded me that once upon a time I made a difference and that difference helped save lives. Once upon a time I was respected in the work I did in the fight against CMV, the virus that so cruelly devastated my precious son’s brain. Once upon a time I would speak in front of hundreds of medical professionals at international conferences. And, once upon a time, I could hold my head up, as compared to now…now, when most days I am left feeling like an unworthy, disrespected, social welfare recipient who doesn’t work, doesn’t deserve a home, and doesn’t deserve a secure future. Thank you, Mark, for reminding me that I am still that person from my past.

Yes, words are indeed very powerful.
Please, choose them wisely.
Use them to do good and not to harm.

 

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Reflecting on family

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Today I find myself quietly reflecting on my family. Not just Brendan Bjorn – who currently has a fever and is laying in his bed unwell. And not just Declan – who is in school and I’m sure excited that it’s a Friday. Instead, I’m thinking about my family that is gone…my mother, her mother, and those I never knew but whose ancestral influence is ever present in my own life. You see, all of my belongings that were left at my ex-partner’s rental house are today being moved into my current disasterous rental house to join with the overwhelming stacks of boxes, and once again seeing some of these precious, cherished heirlooms and photos has left me feeling sentimental and contemplative.

And I wonder, what would they think of my life, my family, of Brendan Bjorn, and the situation we find ourselves in regarding housing and healthcare? 

Min bestemor…my grandmother…Mae Bjorneby, a lovely Norwegian lady who once explained to me how the cocoa puffs she just gave me would turn the milk chocolate if I gave them a stir. It is a memory that, to this day, enters my mind every time I see the cereal. I was amazed that she knew such a fantastic way to make my beloved chocolate milk! What would she say to me now, if she could? How would she feel about our life such as it is? Would she be disappointed in me? Would she extend a helping hand and keep us from sinking? Would she pour a bowl of cocoa puffs for Declan and tell him about the chocolate milk, just to see him smile? I think she would.

Memories are such a powerful force. They can bring pain, joy, laughter or tears. Sometimes, they bring all of those things in one swirling moment that leaves a person feeling much as I do right now – contemplative and sentimental. It can be overwhelming, to say the least.

I find strength in memories and in reflecting on my family – both the family I have now in my two sons, and the family that has gone before me. I take encouragement from the stories they have left behind of their trials in life which they overcame with fortitude and resilience. I smile as I think of their own youthful days as I look through photos and old letters and even my grandmother’s old ukulele with a case covered in signatures of friends and family from both Norway and America.

And I wonder, some day in the future, will Declan’s children look back at photos of me and be able to find encouragement when they hear from him the stories of our current trials in life which require that inherited fortitude and resilience?

I would like to think they will. 

 

mae bj memories

 

Carers, social welfare and the Republic of Opportunity

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A couple of days ago, I was a guest on the Ray D’Arcy radio show. While the original focus was to be on my family’s housing situation, we ended up talking about a number of issues – from my proposal that Carers earn a living, pensionable wage, to the lack of suitable social housing for disabled children like my son Brendan Bjorn, to the fundraiser I am doing to purchase a new wheelchair accessible van for my son. The show provided me with the opportunity to tell the public a bit more about what the life of a carer is like in general and to share my proposal for paying carers in Ireland.

Now, while I’m talking about opportunity, let me take this opportunity to address those in power in this Republic of Opportunity who actually have the ability to make positive changes for children like my son Brendan and for carers like me: 

Carers, social welfare and housing. As I explained on the show (see link above to listen to the podcast), there is a model program out of Colorado that I would like to see introduced here in Ireland for carers such as myself. In short, it is where full time carers would actually be employed as a nursing assistant through a home nursing agency. The State would fund the full time carer to get the training, and once the certification is passed, the carer (ie: now employee) is then hired by a local home nursing agency. Funding for these wages are covered by the State under the umbrella of disability care the medical card provides to all disabled children. The rate of pay for each carer is then based on the level of nursing care duties performed, the daily hours, and amount of days per week, said care is provided for the disabled child or family member.

With a program such as this, the carer is now employed.
But what does that really mean for the carer…and society?

The carer is now paid a liveable wage, and as such, more funds will go back into stimulating the local and national economy.

The carer is now not classified as on social welfare, and as such, is able to apply for a vehicle and/or home loan and be less dependent on the charity of others and on social welfare.

The carer is now able to pay into a pension for retirement years, and as such, will not be a total “burden” on the State as otherwise would be if they were never able to pay into a pension fund.

Those are just a few of the benefits of this program. There is another aspect to this as well, and that is finally recognising carers for the professional-level work they actually do. It is about respect, dignity, and giving carers the opportunity to create a self-sufficient life as they dedicate their own life to caring for a loved-one who cannot care for themselves. 

Yesterday, as I often do, I was watching the Dail in session on TV. I jotted down a couple of quotes from our Taoiseach, Leo Varadkar, as he discussed the 2018 budget:

  • “We believe work should pay and we make no apologies for saying so.”
  • “…rewarding work, protecting the most vulnerable and creating opportunity…”
  • And numerous mentions of “up early”, “working hard” and “opportunity”

I ask the reader to go back to what I said before I mentioned these quotes and think about my proposal for carers. Now consider this:

  • We work 24/7, yet are relegated to social welfare and the poverty trap it can often create. It does not pay, but it should pay, and I make no apologies for saying so.
  • We are the ones who are literally on the front line protecting the most vulnerable, yet we do not have the opportunity for our work being rewarded. This program would do that.
  • We get up early. We get up numerous times in the middle of the night. We work hard. In fact, we work damn hard. As for opportunity – many of us had to give up our opportunity called a professional career when, as fate would have it, we had a child born with severe disability…but we still want the opportunity to make the most out of our lives, with respect, equality, and fairness, commensurate with the work we do. 

Back to the Ray D’Arcy show. Someone called or texted in the following message. I leave it here with the following question: Is this what the government thinks of carers, too?

“We can’t give mortgages to people on social welfare or we’d have a whole class of people having 12 kids to get enough child benefit to qualify.”

I still have the dream of owning my own home, providing my two sons with a home for a lifetime. I still hope the county council will see my Carer’s Allowance and other social welfare payments as income, so that I can avail of their low interest mortgage loan program for people on their housing list and buy that dream house that is currently on the market. I still want to be self-sufficient, respected, considered equal by my government leaders, and live a life where the hard work I do is rewarded fairly. And I still want my youngest son to be able to see all of this happening and be proud to call me his mother.

with Ray D'Arcy

**As a result of being on the show, the past 2 days have seen the goal of a new, reliable and safe van coming ever so close. I want to take this opportunity to say THANK YOU, not only to Ray for being so kind and supportive, but to all of you who have so generously donated at hearing our story on Ray’s show. Bless you all!! 

Looking back

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Hindsight, they say, is always 20/20. I believe it is, so long as we are looking back with vision cleared by way of the lessons having been learned. Lately, I’ve been doing a lot of looking back. Probably too much, to be honest.

As a parent, and I think especially as a lone parent, guilt often comes as part of the package deal. I’ve plenty of guilt these days, and maybe all the looking back I am doing is compounding that guilt. I suppose one day, when I look back on these recent struggles, I will have that 20/20 hindsight. I hope so, anyway.

What does one do when the present feels so disorientingly surreal and looking back brings too many questions of “what if” to dare examine? 

Looking back, I see an independent woman determined to make her life the best it could be. A woman who actively chose to become a mother. A woman who promised her son, and then her second son, that she would always do her very best for them. Yet, looking back, I also see a woman who trusted when she shouldn’t have, made some choices from the heart that she shouldn’t have made, with the result being those lessons hopefully learned in that all-too-clear hindsight that is 20/20.

Looking back, I remember a major turning point of my life 10 years ago when, being publicly humiliated and shunned by a Catholic parish back in America, I was told I was a “bad example to children” and “tarnished the reputation of the parish” because I was pregnant and unwed. It was a choice I made, and it is one, when looking back, I will never regret. No clarity of hindsight needed in this matter. It was, and is, the best decision I ever made – despite the critics, despite the judgements, despite the pious hatred, despite it all. And as I hear Brendan Bjorn, who is at this very moment lying in his medical bed, laughing at his younger brother, some of that guilt is washed away. Yet, it is still something I occasionally look back at because what happened then did forever change the course of our lives.

The present is, as I said above, surreal to me. I look at recent newspaper articles and see our private lives splashed out in colour and detail in a desperate plea for help…and the guilt is made tenfold at each glance I take. Guilt that I cannot independently take care of these two amazing boys of mine. Guilt that we now face homelessness, as the formerly strong, independent woman in me shakes her head in self-disappointment. Guilt that maybe, just maybe, if I had better learned lessons in the past, we wouldn’t now be in this situation.

I don’t know.

Can any of us really know, though, had we chosen the other “what if” where we would be in our life present day? I don’t think so. 

Looking back, and looking ahead, I must try harder to focus on the beauty of the days and the gifts that each of my sons bring to my life…to our life together as a family. That is what will keep the present days from being too surreal, and too dark. I’ve been given blessings untold by being the mother of Brendan Bjorn and Declan. Blessings that the world doesn’t read about in these stories of pending homelessness and struggle, but they are there, lest anyone think otherwise.

As I drove down the road the other day, contemplating all that is happening in our lives present day, I looked back.

There, in the reflection, was my answer – and my saving grace. 

 

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Because some lifetimes won’t be that long

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Tonight I sit here in the quiet listening to the wind outside whipping through the rafters upstairs, bringing a chill into the air. The wind chime’s dance sends soothing tones across the darkness. The boys are asleep but I can’t yet seem to find that peaceful escape of my own. Today, Brendan Bjorn became a teenager. I still can’t wrap my head around the fact that he is now 13 years old! Wasn’t it just a few years ago that he was a baby I could lovingly cuddle in my arms? Apparently not. Time flies, and all that.

As birthdays can make a person do, I am feeling sentimental, reflective, and my heart is heavy with emotion while my mind is spinning with concern. This past week, I’ve done everything I could think of to facilitate finding a long-term home for my family: I met with a government Minister in the Dail; I met with journalists; I continued to (unsuccessfully) apply for rental houses on the private market to avail of HAP; I wrote here about the type of house we need and why; I posted on Twitter photos of where we are now with explanations of how dangerous and unsuitable it is. Yet, despite my best efforts, nothing has changed. We still are on the verge of homelessness as I delay going into emergency accommodation for as long as I possibly can.

In this silence, it comes to me that I don’t want a long-term home.
And I certainly don’t want a rental home with a mere 12 month lease. 

What I want is a home that will last our lifetime. 

One of the other things I did last week was to enquired about a low-interest home mortgage loan scheme offered by the county council to people on the housing waitlist. Quite disappointingly, I learned that I am not eligible to apply for such an opportunity because my income as a full time carer to my son is not actually considered as income. It is social welfare – a fact I despise. And, regardless of the security in the regular monthly payment from the State, it is not income that qualifies for any type of loan in the eyes of those who set financial guidelines. I was also told that it isn’t seen as secure finances because my “circumstances could change.” Yes, true, one day I will no longer be a carer because some lifetimes won’t be that long.

I then pointed out to this person on the other end of the phone that anyone at any time could lose their income, whether they work at a large corporation or the small shop down the road. It didn’t matter.

I then pointed out to the person on the other end of the phone that if I could obtain this low-interest home mortgage loan, I would get off the housing list, freeing up a space for someone else, and simultaneously give my two sons a family home that would last a lifetime…or should I say, two different lifetimes. It didn’t matter either.

Basically, it doesn’t matter that the work I do 24/7, which literally daily saves the life of this vulnerable, amazing child of mine, is that of a highly skilled nurse. It doesn’t matter that if I brought in less money working at a local shop, I would then qualify to apply for this low-interest home mortgage loan. Social welfare is not accepted, full stop. I wanted to scream, “But I don’t want a hand out, I want a hand back up!”

What I want is a home that will last our lifetime. 

The wind is still howling through the house and in my ever-growing tiredness, I will share something so close to my heart, and so unique to this journey, that I doubt many will understand. This is another aspect of finding a home for my family that weighs on my soul, one that I’ve never before voiced…

It’s the part about how some lifetimes won’t be that long. You see, I don’t want to ever have to leave the home where Brendan Bjorn will spend his last years with me and his brother Declan. I don’t want a council house where shortly after I lose Brendan someday, they tell me we must go and give it to the next family on the disabled housing list who needs a modified home. No, I want to stay there, in that home – in our home – where he was for his remaining time, which I hope and pray is a good number of years still to come. For the rest of my own lifetime, I want to be able to walk into Brendan’s old room and visualise his smile, to hear his laughter, to feel his presence. I want Declan to be able to reminisce, as his own cherished memories of his brother arise, when he enters this room or looks out that window.  I don’t want to ever have to leave behind the home where all those final memories will have been created. 

I know I couldn’t bear leaving it behind…

…because some lifetimes won’t be that long.

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THIRTEEN

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I laid nervously on the operating table unable to see what the obstetrician was doing beyond the white sheet draped across my chest to block the view. I was waiting for the surprise of my life – what would the gender of my long-awaited first born child be? This baby, after 4 miscarriages, would finally make my dream of being a mother come true.

Thirteen years ago today, I heard the words “It’s a boy!”

My heart lept! The tears streamed down my face. A boy. I had already chosen his name. He would be called Brendan Bjorn.
Seven pounds, eleven ounces and he was proclaimed perfectly healthy. I was finally a mother, thanks to this amazing little baby boy who I now held in my arms.

Thirteen years ago today, I couldn’t have imagined the journey that very baby would soon take me on, as within weeks, his condition and the resulting severe brain damage would cruelly reveal itself.

For so many years, after so many losses, I never thought I would be able to be a mother. 

For so many years, after so many near misses, I never thought my precious son would live to be a teenager.

But here we are today, 1 October 2017, celebrating this most special, incredibly momentous, thirteenth birthday. We won’t have a party. I’ve tried that in the past and had no one show up. (I know that some of my fellow special needs parents are nodding their heads in recognition.) We won’t have a bouncy castle in the garden. No trip to the cinema with friends. And sadly, not even one birthday card came in the post this year. I’m still holding out hope the few that should come are merely late, although I have a feeling that if they were to come, they would have been here already.

So be it. We have each other.

Today, Declan and I will surround our beloved Brendan Bjorn with smiles and laughter. We will sing happy birthday to him while the candles on his birthday cake flicker in front of his beautiful face. It is a cake he cannot eat. They are candles he cannot blow out. We will make the wish for him, blow out the candles for him, and enjoy the cake on his behalf. And through it all…through it all…I will do everything I can to keep the sweetness from turning bittersweet.

Thirteen years ago today, my world was turned upside down. The life I thought we would have instead turned out to be nothing even remotely close to what I had envisioned. There had been, and continues to be, struggle, anguish, heartache and pain as I attempt to not fall flat while literally and figuratively carrying this fragile child of mine on this journey. But there has also been, and continues to be, tremendous beauty, learning, the deepest of joys and the purest of loves as we navigate our way together to wherever it is this journey will lead us.

Brendan Bjorn.
My first born son with a life-limiting condition is THIRTEEN today.
THIRTEEN! 
What an absolutely priceless gift he has given to me.

 

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Understanding the housing needs of a severely disabled child with profound care needs

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Even though I feel I’ve written ad nauseum about my unsuccessful search for disability suitable housing, I realised this morning that many people still don’t “get it” – and that includes those who hold Ministerial positions within our government. What better time than now to try and explain, one more time, exactly what is involved and needed for a person that is severely disabled with profound care needs, such as my son Brendan Bjorn.

RENTING:

Securing a rental lease is not only a nearly impossible (or so far, totally impossible) task in today’s desperately competitive private rental market, but for families with a disabled child it amounts to merely putting a plaster on a hemorrhaging wound. Here’s why:

  • HAP – the majority of landlords don’t want to get involved with it.
  • HAP – it doesn’t cover the full cost of rent when considering the type and size of house required for a severely disabled person with profound care needs.
  • Renting is a short term solution to a long term need. Pardon me, a right.
  • Renting a house does not provide security. A vulnerable family such as mine could be given notice to vacate after a 12 month lease, thus back at the impossible task of trying to locate – and secure – a suitable rental house…yet again. Homelessness is highly likely in this scenario.
  • Renting someone else’s home does not allow the family to avail of any home modification grants. But even more importantly, it means the family cannot modify the home to safely and properly care for the disabled family member.

Here is just one example of what renting looks like – a shower chair sitting unbalanced in a bathtub; no safety rails; unable to use a hoist as the doorway is too narrow and the hoist legs cannot go under the tub. Dangerous, inhumane and risking the life of the disabled person as well as the health and safety of the carer who is forced to carry the disabled person in their arms across a wet floor, through doorways, from one room to the other:

brendan in bath chair edited

Here is what having a proper, life long home looks like – A wet room with ceiling hoist track system; shower trolley bed; ease of access from bedroom to wet room. Safe, respectful and best practice standards for both the disabled person and the carer:

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There are many, many other aspects to this situation that could be addressed, but for the sake of this article, I’ll just demonstrate with one more photo.

Subject: size of the house required. My son’s supplies and equipment literally take up one room all on their own – and I don’t mean his bedroom. I mean a separate room meant solely for supplies. Currently this is what my kitchen looks like:

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So, when one considers this, that’s a 3 bedroom house. But then there is my other son to consider. He must have his own bedroom because every time I go into Brendan in the middle of the night and have to turn the light on, it wakes Declan. At least once a night, every night. Now we’re talking about a 4 bedroom house being required. The cost of rent just went double what HAP would provide. (I’d refer you now back to the above list regarding why rent does not work for a family like mine)

If a family with a disabled child is fortunate enough to own their own home, there are grants for modifications. Even so, families have had to fundraise to cover full costs of modifications…but at least they have that opportunity.

If a family with a disabled child is fortunate enough to have a suitable home via county council social housing, the council can/will make the necessary modifications to meet the care requirements of the disabled family member.

But if a family with a disabled child is left to the private rental market, they are left at tremendous risk of homelessness. If not homelessness, they are more than likely forced to settle renting an unsuitable, unsafe house (as the photo above demonstrates).
No chance for required modifications.
No security of tenure.
No safety for either the disabled family member or the carer.

Is this really what we want for the most vulnerable members in our society?
I ask, but I’m nearly afraid to hear the answer from those who have the power.