Mother’s Day 2018

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Brendan Bjorn gave me the gift of becoming a mother when he was born on 1 October 2004. After 4 miscarriages, I held this beautiful baby boy in my arms and rejoiced at not only finally becoming a mother, but at the doctors saying he was perfectly healthy. As we all know now, he is not perfectly healthy. The past 13 years have been a journey I never expected, and frankly, had I been told before he was born of the many difficult challenges we would continually face, I would have told said there is no way I could handle that kind of life.

Yet, here I am.

Here we are.

We are surviving. 

Surviving, yes. Thriving, no. Experiencing life to its fullest potential, definitely not.

As a mother, I am happy that I’ve managed to give my sons the loving little family unit in which we find comfort, despite those incredibly difficult challenges that we continue to face. It takes a resolve of spirit most people will never understand unless you walk in our shoes. Having said that, I am sincerely disappointed in myself on this Mother’s Day (and most every other day, especially lately) that I have failed to give my two sons what they need in a secure, safe, forever home – especially Brendan Bjorn, considering his profound care needs. Yes, some days I even despise myself for being a “failure” in this regard. I admit this ugly truth here because it is part of my journey with Brendan and that is what this blog is about, after all. So, there is the truth of the matter on how I feel.

I also reflect back on my own mother. I lost her in March 1990, so coming up on 28 years ago this week. She was only 60 years old. Cancer. I miss her sparkling, bright blue eyes and the way they twinkled when she smiled. I miss the conversations we would have, especially in her last couple of years when she was sick, and how she revealed to me just what a loving, beautiful soul she was. I miss her gentleness in a world that is often devoid of even simple kindness. And I wonder, what she would say to Brendan Bjorn if she could stand next to his bed and stroke his thick brown hair? I can only imagine…and it makes me smile, though it’s bittersweet to think upon.

And what is Mother’s Day without thinking about the line of mothers that have come before us? I also think of min bestemor, my grandmother, who in her younger days before having a family of her own, spent her days living between Norway and America. Her first child was my mother. This morning I sit here looking across the room at the framed photo of her tenderly holding my mother in her arms, just as my mother held me and as I held Brendan when he was a baby – and continue to do so each time I carry him so carefully.

This Mother’s day is filled with poignant memories, administering medications and holding my son as he retched with ongoing feeding difficulties. This is my Mother’s Day, and at the end of the day, it is a day like every other day except for the fact that it’s a gift in and of itself, given to me by the teenage boy who lay in his bed in the next room from where I now sit typing about his journey.

So, to that most special boy who gave me that gift of being a mother, and who has taught me more than I could ever hope to teach him, I love you beyond words, my sweet, sweet Brendan Bjorn

 

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On this Mother’s Day, I also think of the many mums out there who have lost a child. This day must be so painful for them, on so many levels, as they remember the joys of their precious child with the heartbreak that comes with no longer having them to hold. My heart goes out to you all.

The ratification of the UNCRPD

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The UN Convention on the Rights of Persons with Disabilities. Tonight, 7 March 2018, Ireland’s government finally…FINALLY…agreed to ratify this tremendously important convention. Embarrassingly, we are the last EU country to do so. The next step is the Minister for Foreign Affairs must lodge documents of ratification with UN Secretary General. Then, in 30 days, it will be official.

I applaud my fellow disability advocates who have relentlessly pushed the politicians – politicians who have always held the power to see this ratification happen but didn’t.

I applaud the politicians who finally listened, who saw the need for this ratification, and who in turn made sure it would come to fruition.

But where do we go now as a country?

To be sure, the ratification of the UNCRPD is only the beginning. It is a tool we have needed to legally fight for the rights of people with disabilities. It is the way we will (eventually) see no more deprivation of liberty, because let there be no doubt in anyone’s mind, there has been – and continues to be – an ugly deprivation of liberty in Ireland’s disabled community.

There must be ring-fenced and increased funding to expand all services for people with disabilities. 

There must be absolute priority given to disability suitable and appropriate housing for people with disabilities and the families with disabled children. 

There must be more options for adults with disabilities on where to live if they need care but home care is not an option for whatever reason.

There must be a vast improvement in the waitlist timeframes for all medical and therapy consultations and treatments. I would suggest a maximum waitlist of 60 days. 

There must be more grants made available for daily living needs, be it an accessible vehicle, home modifications, or mobility/care equipment. 

There must be proper wrap-around services for people with disabilities and/or the families of children with disabilities – mental health counseling for the family; annual medical checkups if requested; social services as needed; housing supports; respite, in and out of home, as requested; palliative care support for families; and so much more.

There must be more special needs schools and classrooms established across the country – rather than families waiting months if not years for their child with disabilities to simply avail of the basic right to an education.

There is so much more that needs to be improved, reformed, implemented, and brought up to a standard of equality, that I couldn’t do it all justice in this short blog post. As I said above, this is just the beginning. This is the tool we needed to have the ground on which to base our fight for equal rights – often basic human rights – and for the extraordinary needs that many people with disabilities have in order to live their lives to the fullest potential.

I can’t end this piece without mentioning carers, the often silent voices that are forgotten in the discussion of disability rights. Many carers, like myself, are the voices of the profoundly disabled who cannot speak up for their own rights. We speak for them. We fight for them to not be deprived of liberties and human rights while we try to hold our heads above water to attend to their every need at the same time. I applaud all of you. The UNCRPD is for us, too. It isn’t solely for the person with a disability looking for equal rights in the workplace or equal access to public transportation (both extremely important issues, don’t get me wrong).

No, the UNCRPD is also for children like my Brendan Bjorn, and, it is for all of us who are responsible for our profoundly disabled child’s care.

This is our tool, too. And we will use it well. 

 

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A blizzard, some bread, a boy and a bed.

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Ireland is under a Status Red weather warning for a blizzard that is bearing down on our lovely little island. People are buying bread in droves, which I find funny having been through many blizzards while living elsewhere. But there is something about all this that I don’t find funny. A boy and a bed. More specifically, my boy and his bed.

Brendan Bjorn is bedridden (as most of you know) with a pressure sore just below his left buttocks which prohibits him from sitting in his wheelchair. Today is day 128 of him being bedridden. Yeah, 128 very long days. Anyway, his bed is electric and articulates to keep him safe from aspiration, keep his body – challenged by scoliosis, osteoporosis, hip dysplasia and severe cerebral palsy – safe, comfortable and in proper position. The mattress he lays upon is also run by an electric motor. It is a specialised air mattress designed for pressure sore relief. He is also fed over a 24 hour period via a feeding pump. You guessed it, that pump requires electricity to keep it charged.

What happens if we lose electricity in the blizzard?

We are on the priority list with ESB (for those of you not in Ireland, that is the national electricity supplier). However, being on that list will not keep Brendan’s bed and mattress from working if the power goes out. There is no backup power supply. There is no generator to be given.

What would happen if his mattress begins to deflate?

There is no good option, and the only option would be me carrying him to the sofa. That is a dangerous option when it comes to his well-being. It’s a no option, option, as such.

What do I think needs to be done?

For families like mine who have a medically fragile loved one being cared for at home – especially with such profound care needs – I think there must be implementation of an organised, clear protocol to assure best care will be able to continue. For example: Brendan has a disability team locally on which is a social worker. I suggest that the social worker make contact with each family in this situation prior to a major weather event to address what needs they may have if power goes out. If not the social worker, how about the life-limiting illness outreach nurses that children like Brendan are assigned to and who are supposed to be monitoring their overall care?

There needs to be a backup plan for families like mine, but instead, we are left without contact. No plan. No check-in to see if all is ok. Nothing but silence. Where is the Minister for Disability or the Minister for Health or the Minister for Children? Silent…

But I am not silent. So, I add this issue to my ever-growing list of reforms that must be made for families with disabled children who have profound care needs. It is past time for proper, gold standard, wrap-around care services to be implemented in Ireland.

Today across Ireland, thousands of family carers are tucked away in their homes, quietly struggling to do all they can to keep their loved one alive praying the electricity doesn’t go out, while outside a blizzard begins to rage. It’s not about bread. We can all live without bread. What we carers need is proper wrap-around supports, and we need them now.

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When housing is a matter of life or death

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Brendan Bjorn spent 2 nights in hospital earlier this week to undergo a series of tests in advance of scheduling a spinal fusion operation. The results of these tests will determine if he can safely tolerate such a long, intensive, difficult operation. I pray so, because the alternative to a spinal fusion is horrific…letting time take its course while he would continue to slowly be crushed internally by his ever-twisting spine. Please, re-read that last sentence and let the thought of that soak into your mind. If you do that, you’ll get a glimpse of the nightmare that constantly repeats in my own mind.

One of the issues that arose in discussions with various medical staff was after care and our current housing situation. Yes, if you follow this blog, you know that we only moved into this rental home last month. However, I quickly discovered his bedroom is too small, and that the layout of his bedroom in conjunction with the wet room, doorways and hall, don’t work with a floor hoist, which is what I have. He needs a ceiling track hoist system, full stop.

The floor hoist I have is once again useless because of where we live, which means I continue to lift him as needed. I have chronic back pain as it is (thanks to degenerative discs) and have learned the hard way that I cannot safely carry him from his bedroom to the wet room. So, he will no longer get the proper showering a wet room provides. I will have to give him bed baths for now, and that rips me up inside because he needs – and he DESERVES – to be showered properly.

The medical team made it very clear to me this week that once he has the spinal fusion and is at home recovering, a hoist is 100% mandatory. I will NOT be able to or allowed to lift him on my own without a hoist. The danger is far too great. As well, he will need to have access to a proper bathing via a shower trolley in a wet room. As I said above, I can’t do that in our current rental house because I can’t carry him safely.

So, where does that leave us?

It leaves us needing to move into a FULLY SUITABLE HOUSE. 

Brendan’s medical team, disability team, and various people in politics are all working on letters to appeal to the County Council for this urgently required housing. As I seriously doubt there is any such house in their supply, I would imagine it would mean the coco acquiring a bungalow currently for sale and making any modifications, if needed. But will they do that? If so, how long will it take? I have to ask because my son’s life hangs in the balance. My son’s life is literally dependent upon having the proper house. I’m going to repeat myself…

My son’s life is literally dependent upon having the proper house. 

It’s not that I want a mansion on the hill. It’s not that at all. I just want to save my son’s life, for as long as I can, and make it the best it can be while I am blessed to have him in my life. If I could qualify for a home loan, I would buy my own house in a heartbeat! And frankly, I want to do it on my own! But, banks won’t consider Carer’s Allowance, DCA, et al, as income. It is welfare. I hate that word. And I hate that as a full time carer being relegated to welfare, it therefore resigns us to poverty, no future savings, no stability, no security, and no sense of self-worth for having once-upon-a-time worked my way through University and then through graduate school. No, none of that means anything anymore, nor does it do me any good.

Today, it is all about struggling to survive and fighting for my son’s life.

I sit here this morning feeling lost, tired, and lonely. At times, the disappointment I feel in myself for having not been able to provide the needed home for my son – for both of my sons – is overwhelming and I go to a dark place emotionally. This is the raw truth of it all. It isn’t always a journey of hope and positive thinking, although I try my damndest to make it so. But this week, it isn’t. No, lately it is all about struggling to survive and fighting for my son’s life. My beautiful, precious, amazing angel of a son, Brendan Bjorn. 

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To speak, or not to speak, is that the question?

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I recently sent out a tweet about a conversation I had on the phone with a prominent news reporter here in Ireland. I did not, and I shall not, name this person. Why? Because of fear. Full stop. Fear of this person’s employer, the clout and backing this company has, and those involved with this company. So, let me just say this:

When speaking to a parent of a child with disabilities, one must ask themselves if the words they are going to use are appropriate, considerate and above all, compassionate.

I spent the last 2 days in hospital with my son Brendan Bjorn while he underwent a number of tests to determine if he is a safe candidate for a much needed spinal fusion. During those 2 days, I received a return call from the reporter in mentioned in the above tweet. I couldn’t take the call as I was talking to a nurse at the time. The next morning, I texted this reporter to explain why I couldn’t take the call and asked if I could be of assistance.

I received a reply text. No.

Four lengthy texts later, and this reporter had said what she wanted to say to me. Nowhere in these 4 lengthy texts was an apology. On the contrary, she was “astounded” at my voicemail to her in which I told her I was highly offended that, in discussing a possible film shoot of Brendan, she used the term “lump laying there” (as in, she didn’t want him to look like just a lump laying there in his bed).

Anyway…the texts went on to say how she has been nothing less than 100% compassionate in dealing “with people who are disadvantaged” in any manner; how I misrepresented everything she stands for; how I ascribed thoughts to her that she doesn’t hold; and how in her view, my misconstruing what she said was in turn offensive. So, let me put that out there for the record. Maybe I did? Maybe I was?

I then asked her if she was denying using the term “lump.” She said she didn’t remember every single word she used. Fair enough. I can accept that. And I nearly did, until this…

“…I think it’s important to portray them as real and sentient and cognitive in every report I’ve ever done…”

I sat there in the chair next to Brendan Bjorn’s hospital bed as the anger – and the hurt – welled up inside of me. Real??? I can assure you, my son is oh so very real. Sentient??? One look at any photo of my son (of which there are many public photos) with that amazing smile on his face and you can clearly see, he has feelings. HE’S A HUMAN BEING, FOR GOD’S SAKE! And cognitive??? Lord above, do I need to speak to this, too? Of course he is “cognitive” although his cognition level is not that of a typical 13 year old boy.

Now, I write this particular blog not to be hurtful to her, as she has clearly told me that I have been. If indeed I have been, my apologies, truly. I stopped and asked myself the title of this blog…To speak or not to speak? I choose to speak. Why? Because I want people to understand, to learn, and to gain even an ounce more compassion when it comes to those of us on this journey with a child who is disabled and/or has a life limiting condition. That is all. That is why. And so, I hope those of you reading this will come away with a bit more of those qualities, because we parents need all the support we can get. The last thing we need is to have our child described in such ways, especially when the person using those words knows you are sitting in a hospital room with your child.

Words do indeed matter. Please, choose them carefully. 

 

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The struggles of my youngest son

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Often times, people tend to forget that stuck inside this house with me while I care 24/7 for Brendan Bjorn is a vibrant, amazing, and sensitive 9-year old boy. My youngest son, Declan Dale, is trapped inside along with me, unable to even go for a walk. He’s been home for 9 days now on break from school and we have done NOTHING.

Let that sink in: We haven’t been able to go ANYWHERE for 9 days while he’s been on break. Did you get out of your house in the last 9 days?

If as an adult I am screaming inside of my head at being housebound, I can only imagine the turmoil he is going through inside of his own mind as a young boy. 

No one came to visit.

No one rang to chat to him.

No one invited him anywhere.

So, we row, as any two people would do trapped in a house for 9 days together, no matter how deeply they love each other. As such, our relationship suffers…and it musn’t. We are all we have – each other.

Brendan’s disability team social worker came this week, so I correct my above statement about no visitors. But really, does that count? No, not really. She came to chat with Declan, to see how he is settling in, because I told the team he isn’t settling in well at all.

My little boy, Declan, is changing because of everything revolving around his big brother, Brendan Bjorn. Yes, yes, it in part is making him stronger, more compassionate and all the rest. BUT…it is also stifling his growth as a boy. His potential – physically, socially, emotionally, intellectually – is not being met because of being housebound. Today is day 116 that Brendan Bjorn has been bedridden.

My heart is breaking for Declan. My sweet, sweet boy.

I need in-home respite desperately so I can take him hiking, shopping, out to eat, anywhere…just OUT! We have a nurse coming next week to do an assessment. I still don’t know how many hours per month the HSE will approve because Brendan requires 2 people together to provide respite for him – a nurse and an aide. So, we wait…again, still, always waiting.

Tomorrow, I wait for a call from Crumlin to see if there will be a bed for Brendan to get a sleep study done. If there is, I’ll need to pull Declan out of school and run down to Dublin with the boys, where we will stay overnight. Declan will miss school on Tuesday as well because other tests on Brendan will be run. These include a sedated MRI schedule for 4:30pm – that is, if the department can get to Brendan. So, Declan will wait, again, in the hospital all day, doing nothing, missing school, his potential being stifled. We won’t get home until late Tuesday evening, which will mean Declan will go to school Wednesday morning exhausted.

Declan has 2 weeks off of school for Easter break coming up. Instead of being able to plan something fun with him, we wait to see if I will even get a few hours of respite within those 2 weeks so I can get out of this house with him. We wait to see if Brendan’s pressure sore will finally be healed so that he can get out of the house, too.

God knows I wrestle daily at how I have failed Declan. He deserves the security of a forever family home. I can’t buy one. He deserves to join Scouts, a soccer team, have a garden where he can run and play. He deserves so very, very much! I wish I could give him all that he so rightly deserves – a childhood of security, peace, comfort, and stability. He has enough to be worrying about having a brother he knows has a life-limiting illness. He shouldn’t have all these other worries as well.

My sweet, sweet boy, Declan.

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What you don’t know

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I wonder what people will think when I write about how I just spent 20 minutes looking for my bluetooth earpiece to no avail and ended up in tears, now sitting here on the sofa to calm down. What do you think?

What you don’t know is that for over a week now, my rheumatoid arthritis (RA) has reared its ugly head and pretty much every major joint in my body is in pain.

What you don’t know is that I have a few phone calls to make and holding the mobile phone up to my ear for too long sends shooting pain through my thumb joint where the RA is the worst.

What you don’t know is that I want to call the social worker on Brendan Bjorn’s disability team because my anxiety is off the wall after having been told by the letting agent yesterday that she wants to come by next week to inspect the house for damage because of a harmless cat…only 1 month after we have moved into the house. Despite me knowing the house is far cleaner than it was when we moved in, the thought of someone coming into every room and scrutinizing what I am doing, in what I consider to be my family’s private space, is highly upsetting to me.

What you don’t know is that an hour ago I took 600mg of ibuprofen and it hasn’t touched the pain I’ve felt in my lower back for the last 3 weeks plus. Washing the dishes earlier today left my back in spasm just slightly leaning over the sink, you see.

What you don’t know is that my 9 year old son Declan has had this entire week off of school but has not gone out of the house at all because I am still housebound with Brendan Bjorn being bedridden (day 114). And that kills me inside. Easter week is coming up as the next school holiday and, again, I will have no respite enabling me to take my little boy out into his world.

What you don’t know is that in 4 days, Brendan Bjorn may or may not be going into hospital for a sleep study and the following day he may or may not be going under sedation (always risky for him) for an MRI, all in preparation for a needed spinal fusion operation. The stress of not being able to plan and organise our lives for next week only piles on top of the worry I have over the sedated MRI risks. In a life with no guarantees, I just wanted these appointments to be guaranteed so I could plan…and knock my anxiety level down a peg or two.

What you don’t know is that last night, 30 days after having moved in, I had a nightmare about being evicted out of the house over the fact we have a cat. I was crying, begging her to let us stay. It was one of those dreams where the other person seems to not be able to hear what you are saying and despite you screaming, nothing is heard. I know it is my anxiety coming out in the form of dreams, but that manifestation speaks to my reality.

What you don’t know, is that I grow more and more weary of having to fight for what should be basic human rights. (But you know I won’t give up)

Time to see if some paracetamol and a cuppa will help ease the pain before I get back to my day of caring.

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