What would YOU do in my situation?

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In recent weeks, I’ve received a lot of criticism for the very ambitious goal to crowdfund for a suitable, thus safe, bungalow for my severely disabled son, Brendan Bjorn. I knew I would open myself up to such criticism if I launched such a campaign, but at the urging of friends, I decided to take the leap. I had 2 choices:

  1. Raise the funds to purchase the required bungalow
  2. Don’t raise the funds and this summer see my first born son not come home to me and his little brother Declan after his spinal fusion operation.

What would YOU do if you were in my situation? 

I really want people who are critical of this fundraiser to think about it, please. If you have children, imagine one of them with Brendan’s same complex, fragile, numerous medical issues. Imagine you have no family to rely on; no one you can turn to for your son’s housing requirement. Imagine you were told it would be years waiting on the social housing list. Imagine you have tried for over a year to be approved for the low interest housing loan scheme provided but the government but unable to obtain it because, as a full time unpaid carer, your social welfare payment isn’t considered as income, nor is your work considered employment despite it being a long term permanent position.

Imagine that the last time your child was in hospital, just a few months ago, you left for a couple of hours with a hospital aid sitting at his bedside who was to be attending to his needs, yet you returned to find him partially slumped over in his bed while the aid sat trimming her fingernails with all the nail clippings scattering on the floor.

Imagine knowing that if your profoundly disabled, non-verbal son with intractable epilepsy, high aspiration risk, and who is unable to reposition himself if he slips into an unsafe position, is left in the care of anyone else, it will not be safe and his life would be at risk because nowhere, no one, will provide the intensive 24/7 care that you will, and that you do.

What would YOU do if you were in my situation?

There have been some people who have been circulating defamatory accusations privately on social media. The proof in hand, there is nothing I can do about it legally as taking anyone to court is prohibitively expensive. So, all I can do is continue to be as transparent as I always have been, which is probably far too much. I’m an open book, so if anyone has any questions, message me privately and I’m more than willing to discuss those questions with you. Gossip is just that – “casual or unconstrained conversation or reports about other people, typically involving details which are not confirmed as true.” It is the hateful smears of people who, for whatever reason, get a sense of joy or superiority from bringing down others. Sadly, at the end of the day, it is my son – both of my sons, actually – who pay any price as a result of those who seek to harm my efforts to obtain this medically required bungalow for my son. I have no choice but to rise above it.

What would YOU do if you were in my situation? 

Some parents seek to give their children what they need by risking their lives crossing a desert, a river and into another country in hopes their children will know a better, safer, more prosperous, life.

Some parents seek to provide a safe, finally peaceful, life for their children by risking their lives putting them on an inflatable raft and crossing a dangerous sea.

Some parents move from county to county as they desperately try to get the best services, school, medical care, and/or housing for their disabled child with many kinds of special needs.

Some parents resort to crowdfunding to try and save or improve their child’s life, be it for a wheelchair, a medical treatment, a home modification, or yes, even a disability suitable house. I am not the first, and sadly, nor will I be the last. Not until governments of all countries see that those most vulnerable people in their society are those most in need of their assistance will crowdfunding for such requirements end. Until then, parents in my situation go to any measure to protect and provide what their child needs. And sometimes, that means turning to the public for help.

What would YOU do if you were in my situation?

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Living to fight another day

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A few days ago, I sat in this very seat where I am as I write this now, and, I wrote. Instead of writing another blog piece, I wrote a letter stating my last wishes on what I wanted to happen with my two sons after I died. Let me rephrase that: after I took my own life.

Obviously, I didn’t do it. Thankfully, I didn’t do it. Please God, I never will.

Today, a few days on, I feel stronger. I also feel terribly disappointed in myself for having been at such a low point. And, I am more awake to the fact that I am, in some ways, just as vulnerable as my beautiful son laying in his medical bed only a short distance from me now. But alas, I can get up to fight another day on my own behalf. He cannot. So, I must do the fighting for two people.

No, let me once again correct myself: for three people. 

A person should never have to fight to want to stay alive. Nor should people set out to destroy another person’s character. But, as I’ve found out in recent weeks…they do. Sad, twisted, narcissistic gossips who seek attention and adoration can indeed cause severe damage to other people’s lives. And they did. Not just to mine, but as a result, to my sons’ lives as well. That, my friends, is an unforgivable offense.

But hear this: I shall not be brought to my knees again by such people. Why not? Because I have these two innocent, precious sons who I love more than life depending on me to fight for them.

And so I shall. So I shall. 

Words can be an immensely powerful tool. They can bring laughter, induce love, create heartache, facilitate joy, or bring someone to her knees to the point of wanting to let go of life itself. As words have such power, people must truly take care when writing…especially if they are writing about other people…especially if they are writing falsehoods intended to destroy. Wars have been started by mere words. Lives lost. Loves lost. Yes, words are indeed an immensely powerful tool.

May we all use them solely for the good.
For love, truth, healing, compassion and genuine friendship.

So, a few days on from hitting rock bottom, and I am back treading water again. Some might even think it’s a good thing I am such an experienced swimmer in the turbulent ocean of life. I now can’t deny I need a life raft on occasion, but I have again been reminded I must reach out to grab that life raft when the waves are too powerful for me to keep swimming unaided.

For that reminder, and for the blessing of my two sons and for true friends, I am incredibly grateful.

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Having thin skin

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Brendan Bjorn and I have something in common: we both have thin skin. His is literal. Mine is figurative.

Yesterday, after spending less than 3 hours in his wheelchair, Brendan developed the beginning of a new pressure sore about half an inch above his previous one. It developed despite having a dressing on it and despite being in his chair for such a short timeframe. I am heartbroken.

The skin is only slightly opened, but it will now restrict him to full bedrest.
AGAIN.

The weather is glorious today as I look out the window and see people out walking while cars go steadily by. The three of us won’t be going anywhere on this 3-day bank holiday weekend.
AGAIN.

Brendan’s skin in the area of the pressure sore is now very thin. So thin that it will most likely always be a challenge for him. Hopefully, after the spinal fusion this summer, it will relieve much of the pressure that his currently twisted spine is placing on his pelvic bone. Hopefully the sores will be fully healed when it comes time for this life saving operation – or it won’t be allowed to take place due to infection risk. We often survive on hope, I think.

Me? I also have thin skin…the figurative kind…which has been stretched and pinched and poked at the past number of days. When it comes to my feelings and what other people would do or say in an effort to cause me harm in some form, I’ve had thin skin for as long as I can remember. Things like this get under my skin, I internalise them, and once again in that figurative sense, I am brought to my knees. And in all honesty, I once again became so low that I wondered what was the point of going on. You see, when you already deal with depression and anxiety and then have maliciousness directed toward you, that thin skin doesn’t provide much of a barrier.

I sprayed a skin barrier called Cavilon onto Brendan’s pressure sore this morning after gently cleaning and drying the area. As I slowly rolled him back over, I mused wishing there was a skin barrier for emotionally thin skin. Then I looked up at him. He was looking down at me, smiling as he does so beautifully.

YOU are the protective barrier for my thin skin, I thought to myself. You and your brother, and the two of you are why I keep getting up off of my knees and carry on.

What an absolutely priceless gift he has given to me once again. 

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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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