This may be the hardest lesson yet that my son is trying to teach me

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I have often said that one of my earth angel’s gifts, here amongst us healthy human beings with all our failings, is to teach valuable life lessons. Undoubtedly the greatest of these lessons is that of experiencing and embracing true unconditional love. After many nights and days and months and even years of uncontrollable sobbing – complete with anger, disappointment, guilt, and every other emotion imaginable – I came to a place of understanding this beautiful lesson taught by my precious Brendan Bjorn. And this lesson isn’t just for me. It is for everyone who lets him into their life and allows him to touch their heart. If you truly do that, I promise you will never be the same.

But there is one lesson that I think goes unlearned.
This may be the hardest lesson yet that my son is trying to teach me. 

What is the lesson? 

Every day, 24 hours a day, my son’s life is in my hands. Literally and figuratively. He depends on me for every single care need imaginable. He depends on me to survive. He depends on me to accurately measure his numerous medications. He depends on me to take the utmost care when I move his fragile body from one position to another. And he depends on me to know what he means by that smile, that look, that grimace, or that cry.

My son depends on me. Full stop.

And herein lies the lesson that I cannot seem to learn – or that I resist with all my might: Being dependent. 

I don’t like to depend on others. Over the years, I’ve seen it either get thrown back in my face as a reminder of indebtedness or an excuse to no longer be there to help as if there is a quota on such things. No, it’s just easier to be independent, and so it is what I have always strived to be.

But then the reality of being a lone parent with a severely disabled child arises and shakes me from those past ideals of independence. 

Next week, a new wheelchair accessible van arrives for Brendan Bjorn. It was made possible ONLY by the goodness of others. I had to depend on others…and without meaning to sound ungrateful, part of me cannot stand that fact. I feel weak, less-than, and like a disappointment to myself and to my Father’s voice in my head who always lectured about working hard and being self-reliant.

I’m starting to realise maybe, just maybe, it isn’t being dependent. Maybe it is interdependency. Just as Brendan Bjorn gives so much to me, to his brother Declan, and to those who love him, what blossoms is an interdependency, because we do indeed receive so much from him in turn. In caring for him 24/7, it has left me unable to be self-reliant. That is simply a fact of life I have to come to terms with, if only others would too.

We all depend on each other for different things, giving what we can to each other, to the best of our abilities. Is that dependent or interdependent? 

I haven’t learned this lesson fully yet, but maybe I see a glimpse of what it could be. 

 

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Sometimes all it takes is a moment

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I fell in love today. All it took to catch my eye was a series of 18 colourful photos on a website. Just the right size – not too big, not too small. Yes, just right. A little bungalow with a lovely manicured front garden, a large back garden for Declan to play in, and just 10 minutes from my best friend of 22 years and 15 minutes from what would be Brendan Bjorn’s new special needs school. Yes, it was love at first sight.

And all it took was a moment.

I fell off the unstable, unsafe portable wheelchair ramp that is precariously perched on cement blocks going out my front door today. The bag of rubbish in one hand went flying as I landed down on the tarmac drive somehow with my elbow first. I’ll survive, of course, and I’m sure my once-athletic ego is more bruised than anything else. But it reminded me of how it is far from safe – and how I have to get the boys into a proper, safe, long term home as soon as possible. I could have been taking Brendan Bjorn out of the house when I fell, and that thought doesn’t sit well with me.

And all it took was a moment.

I fell asleep last night worried about the pressure sore that has once again broken through Brendan’s tender skin. As I type this, he lays in his bed somewhat on his side so to avoid any contact that could make the sore worse again. He has a new wheelchair seat designed for pressure sores. He hasn’t been in it that much, in fact. So, last night as I fell asleep, I lay there wondering how did this happen? Why did the sore return so quickly and for no obvious reason?

And all it took was a moment. 

I fell into a dark place today, feeling hopeless as every person with the power to do something about our housing situation has, in the past few days, only said that they couldn’t do anything to help. I know different. I know all it would take is a bit of outside-the-box thinking and the will to do it, and it could be done. I’ve spent hours this week emailing and phoning people, organisations, government officials, and nothing has progressed. So, as I sat here in the quiet this morning, the worry and stress had me wanting to just give up trying.

And all it took was a moment.

I fell in love today with this adorable little bungalow surrounded by a beautiful garden. Do I have the money to buy it or the ability to get a mortgage loan? No. But I can dream about it. I can picture Brendan Bjorn sitting on the wooden deck in the back garden, laughing while he watches his little brother Declan kick his soccer ball from one end to the other. I can imagine having friends over, sitting outside on that same wooden deck, the BBQ going, the music playing, and the good memories being made. Yes, I can choose to dream.

All it took was a moment and I felt the inspiration to keep fighting for that dream.

 

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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. 

 

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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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