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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Asking the hard question: What happens when the adorable baby surrounded by hope grows up?

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What happens when the adorable baby surrounded by hope grows up?

Yesterday, I read a bluntly honest article about this very question. This article, written by Victoria Smith, highlighted the international support surrounding baby Charlie Gard in the UK (who has now sadly passed on) and it addressed what many of us with older disabled children experience. Without holding back, readers like myself were taken through the range of emotions faced when community support disappears – as it inevitably does – once our disabled, medically fragile children are no longer babies that are surrounded by hope.

So what happens when the adorable baby surrounded by hope grows up?

Well, the first step to do in answering that very important question is to read the article I’ve just mentioned. In my opinion, it speaks volumes. In fact, when I shared the article on my social media accounts, I had a number of fellow special needs parents chime in…

Sadly once our kids get past that cute baby stage it’s almost impossible to engage the type of publicity little Charlie got. Also the possibility of a CURE engages interest. Maintenance of comfort and wellbeing does not attract the public interest to any great degree. I would say to people not to throw in the towel on trying but over the 37 years of being a carer I can see this a hard slog to get the attention for a child or adult who has little chance of ‘PROGRESS’ ” – Mother of R, age 38

Honest article.

A sad fact but a true one

And it is a sad fact, and a true fact, that families like mine are very often left to struggle alone in the years to come as our disabled child ages. Our local community (forget about the international community), even our own families and friends, disappear as quickly as they came…as quickly as the hope which once surrounded our precious child disappeared.

We are then often faced with isolation and loneliness because not only has the hope of a miraculous cure or recovery faded away, but so too has our once passionate support network.

We must ask and discuss WHY this happens.

Here is my take on the subject:

Babies represent life, full of hope and endless possibility. People across the world, from all backgrounds, can relate to this all encompassing, life-affirming symbolism of the hope for the future in seeing a lovely new born babe. When a baby happens to be seriously ill, as was little Charlie Gard, people will channel that hopeful energy into support, financial or otherwise, to (subconsciously?) do all they can for that hopeful belief in the future to not fade away…to not die…because that would mean facing our own inevitable mortality.

Having said that, there is absolutely nothing wrong with this level of support. In fact, it is part of what makes humanity great! It is essential for the greater good.

An entire community, country, even world, will get behind the fight for the care of a cute little baby, but when that baby grows over the years into a severely disabled young adult, then adult, where are all the people running to help that child and the parents? They aren’t there. There was no miraculous cure, no sudden healing. The hope of the future which they held onto is no longer there for the public, the community, the extended family and friends…and so they stop fighting for the care, they stop supporting the “cause” and they all too often disappear altogether from the lives of the family.

Let our voices as parents of disabled children with profound care needs be heard:

  • Don’t give up on our children, no matter their age.
  • Don’t ignore them. Don’t write them off as no longer being a “worthy cause” to invest time, energy or even funds, because not only were they never a “cause”, but because they were and always will be a beautiful soul dependent upon others to care.
  • Don’t forget us, the parents, who are isolated as we try to hold on to hope –  a hope that is now transformed into simply hoping to provide the best quality of life possible for our fragile child…that child who was once the adored baby surrounded by so much hope.

 

 

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In the shelter of each other

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I first moved to Ireland in 1995. At that time it was a much different place than it is today. Back then, people seemed to be more connected, better realising that we are all dependent upon each other to make it through this often tumultuous journey called life. Don’t get me wrong, that sense of community is still present. All one has to do is look at the selfless efforts of the people out feeding the homeless at night or those who volunteer to answer phones taking calls from people who are desperately trying to hold on to any reason to live. But as I sit here listening to Brendan Bjorn’s movie playing in the distance while he lay in his bed and I watch the grey clouds rolling in, it strikes me how deeply, painfully, we are struggling.

We, the collective we.
And we, my little family.

For the past 17 months, behind the scenes of my often all too public details of life, I have been fighting (with the help of a solicitor and barrister, to be fair) a situation that could have very well resulted in causing Brendan Bjorn’s death. That’s all I will say on the matter for now. Anyway, a few days ago, the weight of the world was lifted off my shoulders and I received word that the matter was resolved in my favour…but far more importantly, in Brendan Bjorn’s favour. And let’s not forget Declan, who upon being told the good news had tears in his eyes of sheer relief, as he carried a burdensome load of worry that no child should ever have to do!

There is a quote (attributed to the Irish, and I’m going with that since, well, I live in Ireland!) which has always resonated with my spirit, that part of me that sees the world in a holistic, connected sense. The quote is this:

It is in the shelter of each other that the people live.

Read it one more time and let it soak in just a bit more.
It’s a powerful statement, isn’t it?

My shelter the past 17 months has been the grace of friends and charities who saw fit to remember that it takes the now seemingly old-fashioned sense of an intertwined community to survive, if not even to thrive. It takes compassion, reaching out, reaching down, reaching up and giving. It takes being someone else’s shelter when they no longer have the ability to provide their own. And yes, it takes love. Good old-fashioned love of fellow human beings.

It is in the shelter of each other that the people live.

And today, while that tremendous weight has been so thankfully lifted, I still worry about my little family becoming homeless. The past 17 months of this struggle has found us at rock bottom – or what I hope to God is rock bottom – and that has left me shaken to my core. I don’t know how else to describe it. Honestly, I don’t think I have ever been under such soul-destroying pressure.

I must now try to rise back up, dust myself off and do everything within my abilities for these two beautiful boys that I am blessed to have as my sons. It may take the community to help see us rise back up, and for that I am humbled (ok, utterly humiliated) as I follow the advice to put out a call for a helping hand. I have nothing to offer in return at the moment, nothing other than my experience, knowledge, and voice to help other families on this journey with special needs children. I have nothing to offer in return at the moment but the ability to give in kind that spirit of community which adheres to the understanding it is in the shelter of each other that the people live. 

 

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*** For those of you who have been the shelter for my little family in these past months, my undying thanks and love – Tracy

Thinking of little Charlie Gard and his parents

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My thoughts have been filled this past week with the story of little Charlie Gard and his parents, Chris and Connie. My heart has been heavy in knowing that they are, at this very moment as I type, preparing themselves to say goodbye to their little boy as he transitions to be an angel watching over them rather than one whose hand they can hold. They’ve not even had one year with him, yet their journey with a child who has a life-limiting illness has undoubtedly taught them – and hopefully the greater community – about true unconditional love.

For Chris and Connie, I hope many things…

I hope the moment Charlie passes will be one of peace, surrounded by love and light.

I hope they are nurtured and lifted up by family, friends and their local community in the coming days, weeks and months as their journey takes a turn down a different road.

I hope the weeks and months to come will find them able to increasingly embrace the beautiful lessons that Charlie was here to teach us all.

I hope they will carry on his loving legacy in good works for children who also have life-limiting conditions, for there are too few voices amongst our community.

I hope that life will bring to them acceptance of this journey despite the indescribable heartbreak that comes with losing a precious child.

And I hope their relationship as a couple will grow stronger through this storm, and that their future will be one filled with enduring love.

I have been amazingly blessed to have my son Brendan Bjorn for over 12 years now. I understand that one day, some month, some year, I will lose him. I have fought tirelessly for services and proper care for my son – and continue to this day to fight – so I have nothing but respect for Chris and Connie’s efforts as they fought with everything they had in them to see the best for Charlie.

It is not the natural order of things, a parent having to bury their child. I even believe it to be the most cruel of life’s possible journeys because surely there can be nothing as painful.

To Chris and Connie, I would say one last thing:

Hold on to and cherish the beautiful moments; to the endless, unconditional love as it will last a lifetime; to that gift which Charlie brought into your lives. For these are the parts of this heartbreaking journey that enable us parents able to continue, and in time, even thrive as we share the story of our special angel. If I could give you one gift, Chris and Connie, that is what it would be.

 

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Why I get out of bed. Why I fight.

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Last Sunday, an article was published highlighting Brendan Bjorn’s need for an urgent spinal fusion. For him, it is a matter of life and death. With severe cerebral palsy that has left him with no muscle tone in his trunk, his spine is literally crushing down upon his internal organs. His lungs don’t function as they should and are more prone to infection, especially considering he already has lung disease. His stomach cannot process feeds any more except at an incredibly slow pump rate into his PEG line. His intestines and bladder, all feeling the pressure of a body toppling down upon itself. His bottom ribs are hitting the top of his pelvic bone. His femurs are not sitting in the hip sockets as they should, in fact, the left side is dislocating. And as his body twists and compresses, he loses weight with the inability to take in the nutrition he needs and pressure sores have been a result of the weight loss and changing body alignment.

Like I said, it is a matter of life and death. The operation must happen urgently. 

As of this writing, he still isn’t on the scoliosis surgery wait list. The consultant needs to sign a form is what I am told. Yes, he will be backdated to the time of the appointment with the consultant (June 2nd), but until he is on the waitlist, I don’t know how long of a wait we are looking at…and how much of a fight I must prepare for in order to make it happen as soon as possible.

My two sons are my life.

Even though most mornings I wake up and don’t want to get out of bed (that is the harsh truth of life at the moment), I get up because I must. I get up because these boys need me to fight for them. I get up because these boys are both struggling in their own unique ways, and by God, I will do what I must to assure their individual lives are the best they can be. I don’t mean materially. I’m talking about quality of life – health (both physical and mental); security in having a safe, suitable home long term; having the support of friends, community, and schools to encourage and nurture their individual growth.

I have recently decided to return to Kilkenny. I’ve missed it. Declan has missed it. And Brendan has a fabulous special school that is excited to have him return. As such, our fruitless search for a rental home in this impossible private housing market has now shifted from North Kildare to Kilkenny. After 15 months in Kildare, we are happily going back to Kilkenny.

Today I will be doing a radio interview with the local Carlow-Kilkenny radio station regarding our search for a suitable rental home. I hope it will result in our finding a secure, disability suitable, long term home. Brendan Bjorn so desperately needs it. Declan so desperately needs it, too, as he has a weight on his shoulders that most adults cannot even comprehend. I need it, too, because the thought of pending homelessness fills my mind constantly, and that affects my ability to fight to put out all the other fires in front of me on this ever challenging journey.

Here’s hoping this week brings good news on housing, on the surgery wait list, and on our overall security. I have to believe that good will always triumph over all that is bad. 

 

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I’m too tired to care

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There are days when physically I am just too tired to care. Lately, it isn’t just a matter of being physically tired, although I certainly am. What I am meaning is that I am beat down on every level, and all the while, apathy is creeping in as my spirit moves closer to total resignation.

And at the end of the day, I’m too tired to care to fight any further.

I was away for 4 nights while Brendan Bjorn was at LauraLynn Children’s Hospice. Let me rephrase that…we, as in my 9 year old son and I were away for 4 nights. The difference is definitely noteworthy. This mini-break was for him, for our relationship, for our bond. It was to give him that important one-on-one time with me that he doesn’t often get when I have to devote so much time, energy and attention on caring for his older brother. We went to the beach, horseback riding, and swimming. We drove from the east coast to the west coast and then back again. We argued, we laughed, and we cried at times as we talked of our life and the challenges we are facing.

4 nights away, and I am more tired than before we left.

4 nights away, and I cut the time short a day because I just couldn’t handle any longer.

4 nights away, and I’m aching for time to find my centre, to catch my breath, and to remember exactly who Tracy is inside.

I’m never free to be me…just me.

I had 4 phone calls and 2 texts just today. All of them had to do with Brendan and his care needs from various providers and medical staff. And I was on “respite.”

I am never on respite. I am always on duty.

I don’t know anyone who understands fully exactly what we are going through. To be alone as a single parent with no family on this journey is hard enough, but when obstacles continue to be placed on the road in front of me, one after the other, it quickly becomes too much…and I am becoming too tired to care.

As I spent a few days in the Westport, Co Mayo area, the beauty of my surroundings made me long for what I cannot have – a home…a home where I can actually find peace and recharge my spirit in the mountains and at the ocean. My artistic nature is grounded, settled, in such a place. And for a moment, I wondered if I could move so far away from the Dublin area, but alas, Brendan can’t manage that kind of travel with his health as it declines. So, I lost hope, again, that I could consider such a dream.

And with that, I shoved another piece of Tracy deeper into the abyss of forgotten self in place of the invisible carer.

The last house I viewed was as close to perfect as I’ve yet viewed, considering it wasn’t the nearly non-existent bungalow to rent, for all of Brendan’s special care needs. Yet the owners seemed to think it wasn’t and told the letting agent that no, we needed a bungalow, so they were not giving us the lease. It’s not the first time I’ve been told this excuse. As apathy sets in, I don’t care what I’ll hear anymore because I am giving up hope that there are any landlords who will have a heart and realise I simply can’t compete against the average prospective tenant. I’m angry, hurt, scared, and ready to give up.

I just want a home to raise my sons in peace, safety, and security. I want to be able to stop fighting crowds of people at viewings for rental house after rental house that I inevitably don’t get. I want to stop fighting every step of the way for services, assistance, timely medical care…everything! I want to stop fighting so that I can spend the precious time Brendan Bjorn has left with us focused solely on him, Declan and our little family together, now, while we can.

Is it not enough that we have to face a daily realisation that he is going to die some day? Is it not enough that we don’t know if that day will be tomorrow or next year?
Can we not just be given that much in this tumultuous life of ours?
Is that too much too ask for?

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When 3 minutes is far too long

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Last night, just before midnight, Brendan Bjorn’s seizure alarm went off. I ran to his room and found him losing colour and in a full blown tonic clonic seizure. I can never be sure how long he may have been seizing before the alarm sounds, because sometimes it doesn’t pick up the repetitive, convulsing movements.

The fact that he was beginning to turn blue told me it had been too long. 

I put on the O2 sat monitor…he was at 70.

I grabbed the oxygen tank, turned it on and placed the nasal cannula around his head.

Declan was now right by my side, but this time it was different…

He began crying, shouting for Brendan to please not die…“Brenny, you’re my brother! Please don’t leave me! Come on, Brendan, be ok!”  

I put my right arm around Declan while holding Brendan in my left arm, and I told him not to worry, that I was right here with him. It didn’t help. He ran out of the room saying he would call an ambulance. He was frantic. This has never happened before…in all the years of him witnessing his brother have seizures, has seen paramedics rush into the house to help him…but last night, something was different.

I called Declan back into the room and explained I needed to give Brendan his rescue medication to stop the seizure. He stayed by my side all the while begging his big brother to hold on and not leave us.

The rescue medication worked, or maybe it was just the timing with the seizure ending, but he stayed with us…thankfully…thankfully.

Once I got Brendan Bjorn settled and asleep after the postictal phase of the seizure episode, I had a gentle talk with Declan. I’ve never seen him react this way and, honestly, I found it equally as upsetting as the seizure, if not more so. One thing that was clearly evident is that Declan has a bond with his brother like no other I’ve seen.

Despite being nearly 4 years younger, he is his brother’s keeper. 

This morning, both boys are fine, although Brendan Bjorn is understandably a bit more tired than usual. Declan is already on his PS4, sitting near his brother, and his world is right again.

As for me, I’m still trying to figure out if I can let myself relax. Ok, not exactly relax, but at least breathe a sigh of relief…

 

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