Equality, cherish, respect, compassion and trust.

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Today – 26 May 2018 – here in Ireland, the 8th amendment banning abortion was repealed as votes were counted and the overwhelming victory for the REPEAL movement was officially declared.

As I watch the news, I hear politicians saying that now women will be cherished, treated with compassion, respect, equality and trust. I have serious doubts which are founded in scandals of the all too recent past. All one has to do is think of CervicalCheck. Or think of the hundreds of women, many of whom are mothers, that are homeless. Or think of the women who are paid less than their equal male colleague. Or the mothers who must take to the media in their fight for necessary and timely medical care for their children with complex medical needs or a twisting spine with scoliosis.

Yes, this is a huge step on the way to achieving the equality, respect and compassion for the women of Ireland that the politicians are now boasting about having brought in with their campaigning. But, it is only a step. It is one piece of a much larger, complicated, jigsaw puzzle.

The politician who said *cherished* is leader of a political party that made devastating cuts to lone parents, most of them women, leading to homelessness, dire economic hardships, and left families struggling to survive. There was no cherishing of women.

The politicians who said *respect* and *equality* and *compassion* and *trust* are members of a political party that have, and continue to, turn their backs on thousands of women across Ireland in a multitude of ways –
…women who are now dying because of changing mandatory disclosure to instead be voluntary disclosure
…women who daily see their disabled children suffer in emotional and/or physical pain because a lack of timely or necessary medical interventions
…women who are ignored, lied to, blatantly dismissed in their pleas for help from their government…women who sit tonight in a hotel room, hub, B&B or even a Garda station with their young children because they are homeless
…women, even quite elderly women, who are left to languish on trolleys in hospital corridors.
…women who make up the majority of full time family carers for a disabled loved one and who are left alone, isolated, with no respite help, no wraparound support services, no ability to live a full life for themselves, let alone secure a stable future.
There is no respect, trust, compassion or respect in these all too common scenarios.

Yes, this repeal is a huge step. But yes, we have a long, long way to go to truly see those words so easily spoken by the politicians become reality for the women of Ireland.

Respect.
Compassion.
Cherished.
Equality.
Trusted.

Yes, we should, and will, celebrate this huge step. But when the celebration winds down, let’s remember to pick up our swords again, because the fight for those rightful ideals is still yet to be truly won.

 

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3 people, 2 months and 1 bungalow.

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It’s just been confirmed: Brendan’s spinal fusion operation is definitely going to happen this summer. Deep breath. It’s really going to happen.

Today, I met with the Orthopedic surgeon to review the pre-op testing done on Brendan Bjorn in February. We also reviewed the x-rays taken today of his spine, which show a marked increase in curvature since February. Urgent just became more urgent.

What does this news mean?

It means I have just TWO MONTHS to secure a suitable bungalow in which to continue caring 24/7 for my son once he comes home from hospital after his spinal fusion.

Just two months. I have been crying for over an hour now as it is all just hitting me.

To say I am experiencing high levels of anxiety is an understatement. Sheer panic is more like it. I absolutely cannot stomach the thought of Brendan Bjorn not being allowed back home after the operation because we currently live in an old, unsuitable – and therefore, unsafe – rental house! That just can’t be allowed to happen! Declan is in bits at the thought of it and I am having anxiety attacks nearly every day. I’m incredibly afraid about the operation. It’s a very risky surgery, but it will help save his life. The alternative is his spine continuing to crush his internal organs. So, it must be done despite the risks, despite my fears. The housing situation merely compounds that fear.

My little family is in turmoil and I’m fighting like hell to stop it all from spinning out of control.

To be honest, we are all suffering in our own ways.

It should be enough that I have to prepare for the fact that in two months, my first born child will undergo a very serious, major operation. But no parent should also have to simultaneously, frantically, try to secure a suitable forever home in which to continue caring for their medically fragile child 24 hours a day. That is the way it is, though. There will be no home loan I can obtain. There will be no social housing given in time. Those are the facts. So, I will try to prepare myself…and both of my sons…for this serious operation on Brendan, while also desperately trying to raise funds to buy that forever, modified, safe, suitable bungalow for him.

Two months. That’s not much time. But it must be done.

 

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Declan: 10 years and counting

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Today, 23 May 2018, my little boy Declan turns 10 years old!! He isn’t so little any more as he is nearly as tall as me now, but to me, he will always be my baby…my hard fought for, miracle, baby.

He is what keeps me going. He is what keeps me looking ahead with hope for any kind of a future. And when I am in a moment of utter despair, it is the thought of Declan that brings me out of it to fight another day.

Ten years ago today, as I held my little 5 pound newborn boy in my arms, my life had been turned upside down only 3 months prior. (Frankly, it’s been in a bit of a spin since.) You see, as a single mother to Brendan Bjorn with a professional career, I made the choice to have another child. As a result of that never regretted choice – as a result of me becoming pregnant against all odds – I lost my job. It wasn’t just a job though; it was a beloved career, a calling even, as a counselor to children in a Catholic School back in the States.

Five months into my very complicated pregnancy with Declan, I was fired for being pregnant and unwed. It apparently didn’t help that I refused to confess remorse to the parish priest like the other pregnant and unwed woman did but who was allowed to keep her teaching job. In retrospect, I think the fact that I missed so many days of work due to Brendan’s needs and appointments was too much for them to tolerate. You can’t fire someone protected under the disability rights laws. You can fire someone for not being *a good Catholic* as the church would so judge.

I was given notice on a Wednesday:
Friday was to be my last day.

I had a meeting with the principle and the parish priest upon my turning in my keys to the school. Did I have any last questions, they asked. Yes, indeed I did. I turned to the priest and asked, “How can you, as a supposed man of God, go to the altar and preach Christ’s teaching of love, compassion, forgiveness, and His love of children, yet fire a pregnant woman with a severely disabled child, leaving them with no income, no means to survive, and no medical insurance?” Needless to say, the priest didn’t like me asking him that question. Nor did he answer. But if looks could send someone to Hell, then I imagine that’s where I’d end up.

I was told I *tarnished the reputation of the parish* and was a *bad example to the children.*

Those words had a very detrimental effect on me. For many months to come, I was too ashamed to even be seen at the area shops, as it was all over the local news and radio: Fired, pregnant, unwed school counselor sues the Catholic Church. (That’s another story for another day.) I suppose those hurtful words still have an effect on me, as just remembering them brings up that sense of anxiety and upset within me.

And all the while, developing inside of me, was this beautiful, loving, compassionate little boy who would grow to be the most extraordinary brother to my angel Brendan Bjorn.

Today, that extraordinary, smart, funny, compassionate boy turns 10 years old! 

To Declan, and to the principal who was a friend and threw me under the bus, and to the priest who knew nothing about Christ’s teachings but certainly was more of a pharisee, I say this: I WOULD NOT CHANGE A THING! I would do it all over again.

Declan will receive gifts today, have a party, enjoy pizza and cake and ice cream. Little does he realise, it is me who will receive the best gift of all – the gift of celebrating 10 years of being blessed to be his mother! 

Happy birthday, my special and loving son Declan. I can’t imagine being more proud of you than I already am. I know your life has been filled with countless challenges and far too many sacrifices to Brendan’s needs. I know, and I am so sorry it has been especially difficult for you. I promise you, I will do all I can to see your life be all that it should be. I promise. 

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A Bungalow for Brendan: The last resort.

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I am putting whatever little pride I have left and laying it aside for my son, Brendan Bjorn. In only a few months time, he will be getting a spinal fusion. He requires a safe, suitable bungalow for his recovery or he won’t be allowed to come home. I simply cannot let that happen.

As it is now, we live in a rental house that is over 100 years old, where he cannot even get a shower. A hoist can’t be used in his small bedroom, the shower room and the adjoining hallway as both have 90 degree angle turns from one doorway to the next. In fact, I can barely get him into his wheelchair, let alone out the front door, because of the layout of the house and the size of the rooms. His wheelchair is bigger than most and is long as well. This house simply can’t accommodate the size of his wheelchair, let alone the use of a hoist system.

Brendan is currently bedridden 22 out of 24 hours in the day due to an ongoing pressure sore issue, so it is imperative that proper hygiene be maintained. Once he undergoes the spinal fusion, showering will be even more imperative to guard against infection.  Bed baths do not provide that. He is a fully incontinent 13 year old boy, so the ability to safely, securely, get him to and from a shower room is a must. Having a 4 post Gantry overhead hoist system is required for this to happen.

Brendan deserves a suitable, safe, forever home where I can care for him properly, safely, and completely for the rest of his life. 

I’ve exhausted all other possibilities.
This is the last resort to get the required Bungalow for Brendan.

Social housing: I’ve been assured there are no suitable bungalows available in the social housing stocks, nor will one be acquired, especially not in time for Brendan’s spinal fusion operation. I have sought the assistance of TDs, county councillors, and have been in the media. There simply are no suitable houses available and the housing waiting lists are years long, as we all know.

Rebuilding Ireland home loan: I have tried since last year to have RI make an exception and approve me for their low interest home loan available to people on the local county housing lists. But, and again, I am assured that I cannot – and will not – be approved because as a full time family carer, therefore I am *unemployed without an income* and an applicant must be employed for at least 2 years and provide evidence of that income. I’ve even discussed this on national radio and in newspaper articles. I have tried to say I will take on a loan, but to no avail. It simply will not happen.

Renting: There simply are no houses on the private rental market that are disability modified to suit Brendan’s complex care needs. Even IF there was, it would be a temporary fix to a lifelong requirement. Personalised modifications tailored to Brendan’s unique needs cannot happen in a private rental house, full stop. Renting is not a realistic or suitable option, especially as his care needs have grown more profound over the last few years.

For months now, I have had a number of very caring people encourage me to do what would be a massive fundraiser to literally purchase a Bungalow for Brendan. And so, as time grows ever shorter and in fact is now at a crisis point of needing this bungalow within the next few months, I have reluctantly agreed to ask the public for help.

I am humiliated, humbled, and ashamed in so many ways, yet for my precious son, I will take those feelings upon myself. I would do anything for Brendan Bjorn, and he deserves nothing less. I know that social housing (also funded by the public) should be the option, but it just isn’t there. I am so sorry it has come to this – a public fundraiser.

With that, there has been a special account set up – an in care account for an incapacitated person – solely for donations toward purchasing a Bungalow for Brendan. 

There are 3 ways a person can donate, if they want and if they can:

1. By sending your donation as a gift via PayPal to email: bungalowforbrendan@gmail.com

2. By making a deposit via online transfer to, or in person at, any AIB branch to Brendan’s special in care account for an incapacitated person:
IBAN: IE57AIBK93137303785065
ACCOUNT: 03785065
SORT CODE: 931373
BIC/SWIFT CODE: AIBKIE2D

3. There is also this option of donating here via GoFundMe, but be aware that GoFundMe do take approximately 3% of each donation.

If we are blessed to be able to purchase a bungalow for Brendan, this will be our forever home – Brendan Bjorn, his younger brother Declan, and me. Declan and I will create memories in the home, with our beloved Brendan, which will last us through our lifetimes. And Brendan, who hasn’t been able to go to school this entire school year due to the pressure sore and, as such, is primarily homebound, will be able to receive the safe, appropriate and loving care that he so rightly deserves in his own home for the rest of his years ahead.

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When you’re fed up with nearly everything, there’s nothing like a good rant.

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Hold my coffee while I have a rant, please. I need to have a rant because I’m fed up with nearly everything.

The first thing is – or shall I say, was – my hair. I was attempting to grow it out again. Why? Some misguided notion that I’d be more feminine or attractive or in fashion or something if I had longer hair. But you know what? I don’t give a sh*t anymore about what anyone thinks. I like my hair short and it’s a hell of a lot easier to deal with short than when it’s long. So, today I got so fed up with it that I got a haircut…and ohhh how good it feels.

That’s the least important matter that I’m fed up with, though. 

I’m fed up with moving around in a desperate attempt to find a suitable home for Brendan Bjorn and his complex care needs. As such, I will move us one more time, and I am determined that the next house we move to will be our forever home!
Forever.
Home.
Not a temporary rental house, but a truly lifelong family home. I am so inexplicably fed up waiting for governmental assistance, that I now have zero faith left that they will provide what is required for Brendan’s best care.

I have given up on that hope. So, it is up to me to sort it out.

Before you hand my coffee back to me, there are other things I’m fed up with, too…

I’m fed up with:
not being able to shower my son;
not being able to use a hoist;
not being able to go anywhere for longer than 2 hours because of his pressure sore;
not getting any in home respite nursing;
not being able to ever get out to exercise on a regular basis;
being in chronic physical pain;
not being able to go visit friends at a moment’s notice – make that, ever;
not being able to take my younger son wherever he needs/wants to go;
not receiving mental health counseling supports for myself and my younger son;
being lonely and isolated as a full time carer;
not being able to breath well since moving into our current old rental house;
not having our new GP take my concerns seriously, dismissing them with condescension;
not having a government where the Ministers actually care enough to help those in need;
and not living life to its fullest, but instead, merely existing day to day, waiting for things to get better…someday. 

Reading that list of things I’m fed up with, you probably wouldn’t be too surprised to hear that this list only scratches the surface. Oh yes, when I said I needed a good rant, I indeed meant it.

It’s healthy to have a good rant now and again. Bottling up all those frustrations isn’t good for the mind or the body, and it’s definitely not good for the soul. Sometimes, after a good rant, a person feels a bit of recharge and therefore better able to face some of the issues they face.

With that, I’ll thank you for holding my coffee while I had my rant. Seems I have just a few things to get to work sorting out, so I best get to it. And now that my hair is cut and I’ve had a good rant, I feel just that wee bit lighter. 

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…and the day isn’t over yet.

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It was my usual early morning start today with Brendan waking up a bit after 6am. It was the start of what has been a very busy day. 12 hours later and the day isn’t over yet.

Once I got Declan off to school, I started getting Brendan ready to head out for the first appointment with our new GP. Getting him ready takes about an hour. Loading him into his wheelchair, then into the van, takes about another 15 minutes. It’s not a quick task, to be sure.

In the midst of getting Brendan ready, the post came. A letter changing the appointment time to see his new Paediatrician. (Insert a rise in blood pressure) The appointment with the new dietician was scheduled for immediately after the original appointment with the Paed. Now, they were 3 hours apart. Brendan is on a 2 hours maximum restriction sitting in his wheelchair because of his recently-healed pressure sore looking very red again. Considering the 30 minute drive to the hospital, the 30 minutes back, and the time taken in the appointments, he’d be stuck in his chair – on his pressure sore – for approximately 5 to 6 hours…and that just can’t happen. So, I rang to change the dietician appointment, but had to resort to leaving a voicemail. No surprise there and no reply since.

I’ll never stop saying that sending a letter to a patient to notify them of an appointment, or a change to an appointment, is a frustrating and nonsensical way of doing business. Ring the patient, tell them what dates/times are available, and let them choose. Happy days for both parties!

Brendan and I got to the new GP clinic no bother, that is until we went down the path to the side of the building to find the door to the lift up to the clinic. The path was barely wider than Brendan’s chair. We get to the door. It opens outward. I couldn’t reach it and with the narrow, walled footpath, I couldn’t turn him around. So, I backed him up down the path, turned him around, and wheeled him backward back down the narrow path to the door. I pulled the door open, held it open with one hand while trying to pull his chair in with the other hand. Yeah, it was pretty much a disaster. Just another example of how wheelchairs are not considered. Accessible? Yes. Barely accessible? Definitely better put.

We get to the lift, go in, and the doors won’t shut because Brendan’s chair is fairly big in comparison to a lot of wheelchairs. So, I had to lift him up in his wheelchair and wedge him in at a 45 degree angle, with me stuffed in the far corner of the lift. Finally, the doors closed and up we went.

Shall I mention that *barely accessible* issue again?

The GP was running late and without me saying too much, the appointment was rushed toward the end. I didn’t get to tell him some of things I was really hoping I could. I left feeling like he was glad to see me go. Now, I’m not saying that’s how he felt. I’m saying that is how I felt in the rush for him to see the next patient.

After the appointment, Brendan and I took a quick stroll along the boardwalk. Wouldn’t you know, he ended up with a dirty nappy. It wasn’t pretty. In fact, when we got home, I ended up having to remove the seat and back of his wheelchair to remove the covers so to wash them. Then I had to scrub down his wheelchair on one side. Yeah, you get the idea of what happened. As they say, sh*t happens…and trust me…it did!

I also received confirmation today that I will not be able to get a Rebuilding Ireland home loan because I am a full time carer, and being a carer 24/7 is not “employment” in the eyes of the government. The struggles that full time family carers face as they are relegated to social welfare is soul destroying. 

With only a few months left to get a safe, suitably-modified bungalow for Brendan before his spinal fusion, this is truly a crisis situation.

Declan goes off tomorrow evening on his first camping trip with Scouts. That’s me tonight – finishing up the packing of gear and double checking the long list of items he’s to bring. Homework, dinner, and here I am, sitting down for a few minutes before carrying on with the bedtime routine for both boys, washing up, wheelchair re-assembly, laundry and finishing off the camping gear packing.

…and the day isn’t over yet. 

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Why I don’t give up

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I’ve had people ask me why I don’t give up – Give up advocating for disability and carer rights. Give up pointing out the failings of the government when it comes to those rights. Give up fighting for suitable housing so I can properly care for my son. Give up going public about our struggles on this journey. And, I’ve even had people ask me why I don’t give up Brendan Bjorn.

I don’t give up because if I do, who will take my place?

I know that some people get tired of my posts about disability on social media. I understand that, although I think they should ask themselves why they get tired of it. Why don’t I give up talking about it? Because the fact is – you or someone you know, maybe even someone you love with all of your heart, is or will become disabled at some point in your life. I think at the core of people’s avoidance of this subject is fear. Fear that *it* could happen to them, to their child, or to a loved one. Trust me, I never could have dreamt I’d be on this path today…but here I am.

So to those of you who may have issue supporting the disability rights cause, I ask you to consider what I’ve just said and then do all you can to assure reforms are made sooner rather than later. This isn’t just my future. It’s yours, too. 

In 2007, I established the CMV Foundation (dissolved as of 2015) because I couldn’t give up my desire to have the world know about CMV and to protect their unborn babies. I was filled with rage at the specialists not warning me about CMV. I was consumed with grief and heartbreak over the news that my perfectly healthy son was, in fact, not. Honestly, if I didn’t start the charity and become such a passionate advocate, I think I would have imploded with all of the rage, grief and heartbreak. 

And as I sit here today, not much has changed in that regard. 

I can’t give up my fight for housing, because this is the last dream I can make come true for my precious son: To provide him with a safe, warm, dry, suitable home in which he will spend his remaining years with me and his little brother, creating memories that will last us through our lifetimes. So, I can’t give up. I won’t give up, because he deserves this, at the very least.

It was this week 5 years ago that I took Brendan and Declan on a trip to Universal Studios in Florida. I looked at the photos on Facebook this morning as they popped up to remind me of the trip, and I cried. Oh, how I cried bittersweet tears as I realise Brendan will never travel outside of Ireland again, his body having grown far too fragile for such adventures.

But, it does my heart good to know I took him on as many adventures as I could!

Disney World and Universal Studios. Up into the mountains and to oceans and lakes. He’s seen Old Faithful blow, fireworks light up the sky and felt snow fall on his face. He’s been fishing and has flown a kite. He’s travelled in airplanes across America and Ireland and the UK. He has met a President and celebrities and has been on TV across America – and his share of media here in Ireland, too!

I am truly happy he got to experience those things while he could.
I just hope I’ve given him enough adventures to fill his lifetime.

So, I can’t give up. The fight continues, not just for our own personal journey and for what Brendan Bjorn so desperately requires, but it also continues for me and for you…all of you I don’t even know…because I will be disabled one day. And you just might be, too. I want it to be better now, for Brendan, and for us whenever we may need it to be.

Life isn’t always what we dream it to be, but so long as we do our best to make it all it can be for those we love, then we can dream new dreams.

 

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