Disability does not equal disposable

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This morning I started my day with the typical cup of coffee while perusing social media. What wasn’t typical, though, was to discover a comment left on one of my blogs addressing the difficulty in finding suitable housing when faced with the requirements that come along with severe disability and profound medical care needs.

“Would it not be possible to place Brendan in a hospice so you and your younger son could more easily find a home?”

Even now, as I re-read that question over and over, I somehow can’t fully wrap my mind around it. That initial smack in my face continues to sting even hours after the first reading. There are some things that people should never, ever, say to a parent of a child with a disability and/or a life-limiting condition. This is one of them. 

Over the past 13 years on this journey with my beautiful son Brendan Bjorn, I have heard it all…

You should put him in a home and get on with your dreams and your life. (He was only a year old at that stage)

If I knew I was going to have a baby like that, I would have aborted it. (FYI – I didn’t know)

When is he going to die?

He doesn’t have any quality of life so really it would be better for all of you if he passed away sooner rather than later.

Some of those above comments were made by family members. The impact is tenfold considering the source. When it comes from a stranger, you can nearly forgive and forget – but still, the sting of that initial smack lingers as it intertwines with the heartache that a parent like me carries, hidden in the deep recesses of our soul, daily.

Here’s the deal: Don’t say those things, ever. Don’t suggest that we place our disabled children anywhere else but home. If we want to, we will, but it is not anyone else’s place to suggest such a decision should be made. Our disabled children are our children. Get that? They are not something that we could – or would – readily dispose of like yesterday’s newspaper. Again, they are our children.

Disability does not equal disposable. 

This journey is hard enough having to fight the system and the government for equality, fairness, specially required exceptional services (ie: disability suitable housing), much needed respite care, medical appointments and operations to be done in a timely manner, and so very much more.

This journey is hard enough when fighting the system and the government, that we are made to feel like our children are unworthy – if not even disposable in their view – so the last thing we need is personal commentary from family, friends, or social media followers suggesting the same.

Disability does not equal disposable. 

 

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First come first serve vs. priority. What’s fair in the world of disability?

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There was a house for rent last week that would have worked for Brendan Bjorn’s needs. There was a 2nd sitting room on the ground floor which could have been his bedroom. And while the house was furnished (we need unfurnished because of all his medical equipment and supplies), it could have worked. Not ideal, but again, we definitely could have made it work. I learned in an email after the house had been let, that the owner and his wife had heard of our story and very kindly wished us the best in finding a home.

But – and this is the crux of this current piece – they felt the fair thing to do was to rent it on a first come, first serve basis.

Part of me can understand that train of thought. In many aspects of life, that philosophy works. When you go to get a coffee at the local shop, you wait your turn in the queue. When you enter the drive through at McDonald’s with your kids, it’s first come first serve. I get it. But when it comes to the special, and often complex, needs of the disabled, applying the first come, first serve ideal usually doesn’t work.

There is a reason the disabled parking spots are closest to the store.

When it comes to people who are disabled and have complex, medically fragile needs, there is a reason they are (or should be) placed at the very top of waiting lists, be it housing or medical – because their very life can depend on that service NOT being first come, first serve. Think triage in a hospital ED. Those most in need get seen to first. Why? Because THAT is fair.

Look, I certainly understand that life is not fair. I will, after all, one day lose my first born child. So, no, life is definitely not fair.

I challenge you, dear reader, to consider where in the sand that fairness line should be drawn.

Do we relinquish the idea that those most in need, those with medical fragility or disability, should be tended to first?

Do we take away the parking places closest to the store and just let people with disability park where they may despite the hardship it would undoubtedly cause?

And should we apply the first come, first serve mindset in housing too, be it rental or social housing?

A point to contemplate: If the answer to this last question is yes, it means the most vulnerable people in our society are being left to fight for a place to call home amongst the thousands of other people who are also searching for a home – but those people can actually fight amongst the crowd. THAT is the difference between equal and fair.

I ask you, what is most fair in this often tragically unfair world of ours?

equal fair

 

Life this week in one sentence

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Sometimes, it only takes one sentence to encapsulate one’s current life situation.

“It’s your fault that we are gonna be homeless.”

Sometimes, it only takes one sentence to tell of a child’s innocent worry.

“Will Santa find us?”

Sometimes, it only takes the start of the sentence.

“When we become homeless…”

Sometimes, it only takes one sentence to cut like a knife.

“If you were a good mammy we would have a home.”

Sometimes, it only takes one sentence to demonstrate the embarrassment of a 9 year old child.

“I told a friend at school that we are gonna be homeless and then he told the whole class out loud and they all stared at me!”

Sometimes, it only takes one sentence – never before said – to convey underlying heartbreak.

“I wish I had a brother – I mean one I can play with”

Sometimes, it only takes one sentence to express the inexpressible fear and turmoil in child.

“I don’t want to be alone tonight so can I please sleep with you?”

Sometimes, it only takes one sentence to shout out the life-changing, detrimental effects pending homelessness is causing.

“I hate life because no one cares what happens to us and if we end up living on the streets and die.”

And sometimes, just sometimes, it only takes one sentence to provide much needed reassurance.

“I promise you baby, I am doing everything I can possibly do to make sure we have a home for you and Brendan Bjorn, so don’t worry…don’t worry.”

I promise.

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Life can’t be wrapped up in a soundbite

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A few days ago, our country’s leader addressed the media about the homeless/housing crisis. For many of us, his words cut to the quick. Soundbites delivered with spin designed to create doubt among the public (ie: the voters).

This morning, I read the latest column by my favourite journalist, Gene Kerrigan. His latest piece, Pity the hapless, misunderstood Taoiseach, literally brought me to tears because he captured so much of what I feel. Read it, please. Toward the end of the article, Gene imagines our Taoiseach on Calvary with Christ and how – even about Christ – our Taoiseach would undoubtedly spin out those same soundbites, designed to create doubt amongst the people, about the rest of Christ’s story. You know, the parts that would make him “undeserving” of public support, sympathy, let alone worthy of receiving any help in his hour of need.

To Gene I say:
Nail on the head! Thank you for once again being a voice for those who cannot raise their’s loud enough to be heard.

To our Taoiseach I would like to say this:
About an hour ago I found myself in tears yet again. I was changing my 12 year old severely disabled and medically fragile son’s adult sized nappy. Runny stool was everywhere. As I attempted to clean him up, the runny stool got all over my dressing gown. In an attempt to finish the job at hand as quickly as possible so my son didn’t begin to have reflux and aspirate (as he does that if laying flat for even a few minutes), I leaned over his body at the wrong angle and my back went into spasm (I have degenerative disc disease now, on top of rheumatoid and osteoarthritis). Finally, he was cleaned up, despite the pain in my back, and I had to drop the soiled nappy onto the floor. It splattered everywhere because I hadn’t been able to seal it up while holding him in the position he needed to be in. That is the moment I began to cry. 

I’m not crying solely over runny stool. I’m crying because I don’t think you, as the leader of our country, care about people like me. I’m crying because Gene’s article brought home to me just how divisive your soundbites are when it comes to people on social welfare or in need of social housing – like me.

With all respect due, let me tell you a few things. As I have been on this earth longer than you, and as I tend to give motherly advice to those so much younger than I, please indulge me here.

  1. You can’t assume you know anyone’s full story. In all likelihood, no one will ever truly know anyone’s full story because no one can enter into another person’s soul to see what it is that drives them on, what it is that brings them to their knees, or what it is that fills their heart with love.
  2. You can’t suggest that everyone on social welfare or in need of social housing is “less than” you, because again, you don’t know their full story. Take me for instance: I worked full time while I put myself through undergraduate studies. Then I did it again, working full time while putting myself through graduate school to earn a Master’s degree. I used to have a profession, a business card, got up every morning (nice and early) and put on lovely clothes to head to my professional work. I was that kind of person you seem only to respect. But then my eldest son was born. You know, the one I mention above. His name is Brendan Bjorn, and for him, I had to leave behind all of those qualities of life and characteristics you praise. But if you saw me now – about to be homeless with 2 young boys, one of whom is severely disabled, me in a dressing gown still smelling of crap, well dare I say you wouldn’t think much of me. 
  3. Life. It’s not about getting ahead financially. In fact, money should only enter consideration when it comes to addressing our basic needs and a bit extra to make us comfortable. Once greed comes into play, the meaning of life gets lost. Trust me on this one.
  4. Death. It is never a good idea to use insulting, divisive soundbites in regard to anyone’s death. Ever. Death is called a loss for a reason. I’ve seen my share. Both of my parents are long dead. I’ve lost 5 pregnancies to miscarriage – one was a little girl with Down Syndrome. Her heart stopped in utero. And my beautiful son Brendan Bjorn…barring an early, unforeseen death on my part, I will one day experience his death as well. So please, don’t create more harm and hurt among the people with such insulting soundbites.
  5. Lastly, life can’t be wrapped up in a soundbite. Life is a complex and intricate experience that at the same time should be simple and whole. Life is not meant to be about who is better than, who is lesser than, who is deserving, who works hardest and gets up early or who is deemed unworthy. It simply is not about those things. Again, trust me on this one. I’ve lived a lot of life in my almost 52 years.

 

25 days to a milestone

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Tonight as I gave Brendan Bjorn his evening dose of no less than 7 different medications, I was chatting away to him as I typically do. “Christmas is only a bit over 3 months away, Brenny!” I said with anticipation of my favourite time of year. And, as he typically does when I chat to him, he smiled broadly while staring into my eyes, soaking it all in. I started thinking then – Christmas…already? One thought led to another and before you know it I realised I had nearly forgotten something no mother should ever forget:

It’s only 25 days until Brendan Bjorn turns 13!

Once I got past the dismay in myself forgetting this tremendously important milestone for my first born child, I began instead to think about what the day, October 1st, will mean. Well, for me, it will mean nothing short of a miracle.

If you had asked me this time last year, I would have said chances are Brendan wouldn’t see 13. His health was in that serious of a decline. But here we are, thankfully now able to count down in days to the special birthday when he will become a TEENAGER! This amazingly gentle, fragile child who has shown his indomitable spirit time and time again, is going to be a teenager. I am truly overcome with emotion as I sit here writing this in the quiet of the night.

When you are on this journey with a child who has such a precarious life-limiting condition, each day you have is one that you couldn’t count on having.

25 more days.

It is also 25 days until my little family find ourselves living somewhere other than where we currently are, although where we will be is completely unknown. We face homelessness and may very well end up having no choice but going to live in a hotel. Now there is a sentence I never thought I would write about myself. 

As I finished giving Brendan Bjorn his medications earlier tonight, my thoughts went from his birthday to where will we be for his birthday? Will he be safe? Will we be in a home? Or will we be in a hotel, him in a flat hotel bed without a specialised pressure relieving mattress, his health…his life…then put in serious jeopardy? My heart sank.

My joy at his milestone birthday disappeared as quickly as it came.

25 more days.

This journey with Brendan Bjorn has taught me that one day can completely change a person’s entire life. This journey has also taught me that you can never be sure what is going to happen from one day to the next.

So, with this journey’s learnings, I can only hope that these next 25 days will change our 3 lives for the better, not for the worse.

I can only hope that come Brendan’s milestone 13th birthday, we are safe, secure, and happily together in what will be our long-term family home.

Only 25 more days until October 1st. 

 

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The good, the bad and the ugly.

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It’s been a fortnight of very mixed emotions. There has been good, there has been bad and unfortunately, there has been ugly…

Some of the good:

  • Brendan Bjorn has been steadily gaining weight since his PEG feeds have been increased over a very slow 20 hour timeframe. It’s working!!
  • A legal matter has finally been resolved after a nearly 18 month wait, during which time we were left without any assistance such as Carer’s Allowance, One Parent family, winter heating allowance, and household benefit package (part of Carer’s). By the grace of friends and charity, we have survived.
  • Recently, Declan volunteered to be a part of the MyNameIs campaign against child homelessness in Ireland. I helped him make a video to raise awareness. When we had spent a week in Dublin this past January, Declan was tremendously moved at seeing the vast amount of homeless people sleeping in doorways as we walked daily from Stephen’s Green to his class at the Gaiety School of Acting. This campaign has provided him – and all of us – an opportunity to speak out. I am tremendously proud of his compassionate heart!
  • I found out that my blog has been selected to be on the longlist for an award in 2 categories – Health & Wellbeing and Parenting – with Blog Awards Ireland. Exciting stuff! Now to make the shortlist!

The bad…

  • There are 7 days until school starts and I still haven’t secured a rental home in Kilkenny that is suitable for Brendan Bjorn’s special requirements. The stress brings on panic attacks and hives and I comfort eat which doesn’t help the weight or blood pressure, but it’s the truth. (There is a joke somewhere in there, I know, but will leave it for another day!)
  • The Environmental Health inspector came out to our current rental. Let’s just say the report won’t be pretty. I didn’t expect it would be. Once you have birds flying around in the dormer rooms, you know it’ll be bad.
  • My well-worn accessible van died on the side of the M9 last week, leaving me and the boys stranded for a couple hours while we waited for the tow truck. In those 2 hours, I was on the phone non-stop trying to find an accessible taxi or an accessible van even to hire. It literally took me that long to find one! €280 to the taxi man and we got back to north Kildare.

The ugly…

  • Social media. People can be quite cruel as they hide behind their keyboard and fire off slanderous statements, lies, and try to create hurt where none is due. I was at the receiving end of such ugliness recently and a friend let me know. I won’t lie, it hurt like hell to see, but I am grateful for someone looking out for me in this way. The ugliness is a reflection of those who spewed it. I will remember this as best I can and move forward from here.
  • Last week, we had a rental bungalow pulled out from under us after being told we had been chosen for the lease and paying the deposit. I had already begun the process of getting Declan enrolled in the local school, told Brendan’s special school we found a place and would be there the first week of September, contacted a moving company, and all the other many tasks that come with moving a special needs household. But then it was pulled out from us for reasons that can only be considered as excuses considering the agent told me a friend of the landlord expressed interest in the house after I had already been told the lease was mine. To me, this is ugly business. You simply don’t do that to a family, especially to a child who has walked through the home and had begun planning in his mind how things would look. A child, who after months of fruitless searching with his mother and having finally been told this is his new home, began to feel secure in thinking he was settled at last. You just don’t do that…if you have integrity and ethics.

 

Yes, it’s been a fortnight of very mixed emotions. There has been good, there has been bad and unfortunately, there has been ugly. All the while, the constant that keeps me going is the love I have for my 2 beautiful sons. They will be my inspiration, motivation and what fills my heart for as long as I live…and my heart couldn’t be more full of love for them than it is every single day! 

 

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Please don’t tell me life is unfair

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The house has been silent for nearly 2 days now as my 9 year old son, Declan, is away spending time with his Godmother at her homeplace in Longford. I haven’t handled it well. Last night, I found myself sobbing in a heaping mess curled up on the sofa after I spoke to him on the phone. He was having great fun, you see, and in my isolation stuck in the middle of nowhere with Brendan Bjorn, it was like a knife through my heart. He was having great fun, and once again, I wasn’t able to be the one having it with him. I don’t think most people can understand how I feel, so this is what I’m going to try and explain in this blog post.

I want to be the one who is free.

I want to be the one who is free to take Declan to local hurling matches no matter the weather or the rocky path to the pitch.

I want to be the one who is free to go for a walk every day with him come rain or shine.

I want to be the one who is free to run through the shopping centre carpark as we try to catch the film on time.

I want to be the one who is free to introduce him to hiking, a past regular activity of mine that I’ve not been able to do in nearly 13 years now.

But I’m not.
I’m not free.

I am a lone parent carer who is as restricted in her actions as is the precious son for whom I care 24 hours a day.

I am a lone parent carer who is never invited over for dinner, for a cuppa, to a show or to anything, frankly.

I am a lone parent carer who lives in isolation in a run down rental in need of repair in the middle of a bogland where no one would even notice if I didn’t set foot outside for a month. (Yes, that has happened, before you ask)

I’ve written a number of times about the mental health struggles of being a carer. When you add having no spouse/partner, that struggle is multiplied on many levels. When you add having no family, it is again multiplied. And when you add having no peers, no friends, who are nearby to socialise with, to support you, to comfort you, to help you, that struggle reaches an unsustainable level.

Yet, despite having voiced all this before, silence remains.

Even yesterday, when I replied to a tweet by a well-known counselor/therapist about the depression and isolation that comes with being a lone parent carer, the reply I received was “I’m really sorry to read that, Tracy. Life is very unfair. I’m at a loss for words.” I myself am a trained counselor/therapist, so I understand mental health quite well. This is how I know just how dark of a place I am in at the moment. And it is also how I know to tell someone that “life is very unfair” is nothing short of a cop out, especially from a trained mental health professional.

This person missed an opportunity to reach out.
But alas, no one really does anymore, do they?

Please, don’t tell me life is unfair.
I see the absolutely cruel unfairness of life every single day when I look at my precious son Brendan Bjorn as his body seizes, as he loses weight, as the scoliosis continues crushing down on his insides, as he becomes bedridden with pressure sores.
I see it and I live it. Alone.

What is unfair is that my 9 year old son has only a fraction of the mother he should have because she is left alone to try and be a full time nurse 24/7 to her other son.

What is unfair is that people feign to care but aren’t willing to help carry the weight.

What is unfair is that my severely disabled son, whose years on this earth are limited, doesn’t get out to see the world nearly as much as he should because his mother is exhausted, depressed, and some days simply too worn down to even get him out of bed.

What is unfair is that I can’t afford to buy a proper WAV (wheelchair accessible vehicle) with an automatic transmission so I’m not in pain every time I drive.

What is unfair is that I can’t afford to buy a secure, life-time home for my two beautiful sons to spend their remaining years together, while they have them, so to create memories which will last Declan a lifetime when that is all he has remaining. Instead, he worries about homelessness.

What is unfair is having a letting agent scold me yesterday for being “impatient” when I followed up on a rental application, seeing  me again in tears. A day in my shoes might fix that uncalled for attitude.

What isn’t fair is having to worry about homelessness, surgery waiting lists, having enough money to buy groceries and pay bills, when all I should be worrying about is making sure the remaining years I have with Brendan Bjorn are filled with as much love and quality of life as it possibly can be.

Please, don’t tell me life is unfair unless you walk in these exact same pair of shoes, because that isn’t fair. 

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