Lessons from other lands

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While Brendan Bjorn was in respite at the amazing LauraLynn Children’s Hospice last week, I spent a few days away to recharge my totally depleted batteries. If I think about it, I’d say my batteries needed changed, not just recharged! Whichever, while it was too short, it still did my heart and head good. Now it’s time to look ahead to what will be a busy summer with Brendan’s spinal fusion due to take place and with what I hope will very soon be a permanent move to the bungalow we have secured with a deposit in County Wexford.

Here’s hoping that I recharged those batteries well enough.

Before I look ahead, I want to put pen to paper on this past week away, for there is always something to learn in life, I believe. We as a society, as a culture, should be able to learn from others without defensiveness or insult. We should be able to accept other people into our fold without belittling or excluding those who are different. Here is why I’m starting off with those thoughts: 

A couple of weeks ago, I was on the phone with someone who made a point to remind me that I am not Irish. In fact, because I am very interested in genealogy and had my ethnicity DNA done a number of years ago, this person reminded me that I am “only 4% Irish” in my DNA makeup. Ok…so what? Should it matter? No. Does it matter to some people? Sadly, yes.

Fast forward to last week, when I was sitting around a dinner table with cousins in a different country. (Do I need to add my DNA ethnicity is 44% for this particular country? No, I didn’t think so, but for those who are keeping track, there you have it…I say with a giggle) Champagne was opened, a proverbial feast of traditional foods laid out on the table, and best of all, laughter and conversation flowed freely. Sitting outside overlooking the countryside while we had our dessert of fresh strawberries and ice cream, the newest member of the family – just 3 months old – entertaining us all, while the sun was working its way down the sky was pure bliss.

God how I needed that time and connection!
May it last me for the months ahead.

What I really want to share with you, dear reader, is what we can, and should, learn from other countries. As I mentioned earlier, we as a society should be able to hear these suggestions without defensiveness, without excluding who is speaking because they “are only 4% Irish” or for any other closed-minded or nationalistic reason. Let’s listen. Let’s learn.

And then let’s try to improve what needs to be done to better support families who have disabled children.

I was telling my cousins about how many homeless we have here in Ireland, and how thousands of them are children. They were literally speechless. Momentarily, that is. In Norway, everyone who wants a place to live will have a roof over their heads. End of.

I was telling my cousins about how I get no in home nursing assistance because the 2 available nurses didn’t want to take the 5 hours per week allotted for various reasons. Again, momentarily speechless. In Norway, considering Brendan Bjorn’s very profound care needs, at the very least I would have full time nursing care available in the home while I was at work, but most likely I would have it 24/7 so that I could also get out of the house for not just work, but to…to have a life of my own, as well. The way we are doing things here in Ireland is inhumane and in many ways, cruel and unsafe for all family members. Can you see how it would benefit the society as a whole, too, if parents like me were able to continue with their careers?

I was telling my cousins about how I am resigned to humiliating myself by doing crowdfunding to raise money to purchase the suitable bungalow that Brendan Bjorn requires because the housing waitlist is many years long across Ireland. In Norway, that suitable type of housing would be provided for us so that he could receive the best care needed, and my own health could be saved from having to care for him in an unsuitable, unsafe environment where I can’t even use a hoist.

I was telling my cousins about the whole 4% Irish ethnicity thing being thrown in my face. That was the one time they weren’t immediately speechless. Thank God for laughter in the face of ridiculousness. 

Now, if anyone reading this is getting defensive or annoyed at me and my 4% Irishness (yes, I say that sarcastically to make a point), please, don’t.

Just stop and listen.
Then let’s ask what are we in Ireland doing, or not doing, that they are doing in Norway? How can we improve what we are doing?
Is it a cultural and/or society viewpoint that needs changed as well as governmental policies? I think the answer to this last question is YES, by the way.

I end a week away with a heart that has been refilled with peace and love and laughter and purpose. I look ahead to the summer that will be filled with hard work and what will be extremely trying times, to be sure. But I’ve no doubt, though, that my 2 amazingly precious sons and I will see it through, together. 

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My family and the stuff of fairytales

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Every once in awhile, you hear a story about a truly astounding act of compassion by one person for another person. It is the stuff of fairytales. It is the story you hear on the news and say to yourself, “that would never happen to me.”

Well, it did just happen to me.
It just happen to my sons.
And it just saved my family.

We have just received one of these truly rare and astounding acts of compassion by a person who shall remain unnamed.

The astoundingly generous, unbelievable act of compassion?

A private loan to cover half of the cost of the Bungalow For Brendan. 

This amazing person understands that as a full time carer to Brendan Bjorn, I cannot qualify to obtain a bank (or even government) home loan, and has just given me the opportunity – indeed, the blessing – of a lifetime by extending to me this private loan and as such, to provide a forever home to save my little family.

I sit here typing this, stunned. In shock. Tears of indescribable joy flowing. Relief and happiness swirling around with the overwhelming feeling of knowing there are truly angels who walk this earth…and I’ve just met one. I have no other words to describe how I feel as my head is still spinning, but I’m sure in the days to come I will find those words to do justice to this great act of true compassion.

So, where it leaves us now is the need to raise half the cost of the bungalow, which would be €125K. As it stands currently, there has been 25K raised, so left to urgently raise is the remaining 100K.

That’s just 5,000 people donating €20 each. I hope beyond hope that this is attainable! I do think it is, and the thought of that brings such bright promise to my family’s future and for Brendan Bjorn’s health and quite frankly, to his life.

Tomorrow we go to view a bungalow. If it is suitable, a (refundable) deposit will be put down to hold it until the rest of the funds are raised, which of course needs to be as soon as possible.

Tomorrow will be such an important day for me and my two sons.

Today, our lives have just taken a turn for the better, finally, by the grace and goodness of this unnamed person. May this person receive blessings tenfold in return, for they have just made the stuff of fairytales come true!

 

bungalow fund payment options

3 ways to donate to the Bungalow For Brendan fund

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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