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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The stress of yesterday. The inability to plan for tomorrow.

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I bet many of you won’t understand this blog entry. And I bet many of you will say you understand, but in fact, you really don’t. You just think you do. Unless you have walked the exact same journey as someone else, you don’t really understand. You can try to empathise, sympathise, have compassion, but you don’t really GET IT.

Yesterday I got two bits of news that left me in terrible form last night. Today, I’m left angry at the systems which have created these issues. These issues, which I will address below, now leave me with an even more pronounced inability to plan for the near future.

And forget about the distant future, I can’t emotionally afford to let myself go there.

So, yesterday morning I had a very productive meeting with Brendan Bjorn’s new disability team here in Co. Louth and with the previous one in Co. Kildare to assure a smooth transition of care. That is the gold standard for continuity of care and I’m truly appreciative to both teams for making it happen. I’m very impressed with the Co. Louth team – they have been nothing but proactive, attentive and in tune with Brendan’s high level of needs. This, though, leads me to the troubling issue resulting from that meeting: Upon seeing that I cannot use the hoist to get Brendan from his bed to the wet room for a shower, it left the team with the conclusion that either the council needs to provide us with a completely disability suitable permanent home, or this home needs re-modified. Of course, the latter point is basically moot considering this is a privately owned rental home. So, unless the council wants to buy it and the owner wants to sell it, forget that idea.

Now what do I do about the housing situation…again?

Next up: yesterday afternoon. After having sent an email to the scoliosis team at Crumlin, I received a phone call. Here is what I learned:

1. The appointment for the sleep study coming up in 10 days is NOT guaranteed to happen. If they need the bed for another child, Brendan will lose his bed and that study will have to be rescheduled. Again.
2. They will ring me that day between 12 – 2pm to let me know if there is a bed available. It’s a Monday. Declan will be in school. I have no one to take care of him so it will mean I remove him from school on the fly as I load up Brendan to drive down to Crumlin from Dundalk.
3. There will only be an aide to sit with Brendan during the night, not during the day, and they require me to be there anyway to answer all the questions that will arise. This means Declan will have to miss school Tuesday as well. And it means we just as well not bother to drive the 90 minutes home for the night and then back down early the next morning and will find a place to stay in Dublin for the night.
4. The MRI isn’t scheduled until 4:30pm on Tuesday (and I was reminded a few times how lucky we were to get a cancellation. Sorry, but I can’t celebrate that “luck” resulted in what should be a standard level of good care.)
5. The 4:30pm MRI might not even take place, depending on how busy the department gets during the day. This would mean A) staying another night inpatient IF there is a bed, and B) Declan missing yet another day of school on Wednesday, that is IF the MRI were rescheduled for the next day. And let’s never mind the pets back at home in all this uncertainty.

Back to not understanding.

Unless you are a lone parent with absolutely no family to help mind your other child, you don’t understand the amount of stress that that lack of a support brings as you try, alone, to juggle both of your children’s very pressing needs.

Unless you are the parent of a severely disabled child with profound care needs, you don’t understand the sheer frustration in dealing with a clearly long broken healthcare system that doesn’t have a clue what it’s like to be the parent of such a child.

Unless you are at the mercy of the greed-driven housing market brought on by those with no compassion for families like mine, then you can’t understand the insecurity felt to my very core as I struggle emotionally knowing that I cannot provide the suitable, life-long home which is required for both of my sons.

I bet many of you won’t understand this blog entry. And I bet many of you will say you understand, but in fact, you really don’t. You just think you do. Unless you have walked the exact same journey as someone else, you don’t really understand. You can try to empathise, sympathise, have compassion, but you don’t really GET IT.

The silence of solitary confinement

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It has been 7 years since I worked outside of the home. It has been 10 years since I worked in my profession as a Child and Family therapist. And I can’t tell you how much longer it will be…if ever again. Instead, I am home 24/7 caring for my beautiful son Brendan Bjorn, who is now 13 years old, severely disabled with profound care needs and has a life-limiting condition. That is my job. Clarification: My unpaid job with no security and no opportunity for financial stability in the years to come.

Today, as I drove back to our newly acquired rental home in Co. Louth after collecting Brendan Bjorn from respite in Dublin, I did a lot of thinking. The title of this blog came to me as I was driving, in fact, as I was trying to put into words how I feel today. Alas, the title of this blog is what it is. Being a lone parent carer 24/7, especially considering today is day 106 of Brendan being bedridden with this terrible pressure sore that won’t seem to heal, is its own form of prison. Not just prison, but solitary confinement. 

My mind wandered even more the further we drove. The film Notting Hill came to my mind. It’s not the romantic part of the film I was thinking about, though, before you all think I am total sap (which may in fact be true anyway). Instead, I was thinking about why that is one of my favourite “feel good” films to watch – the friendship amongst the characters in the film. There’s one particular scene that came to mind where Julia Roberts’ character is invited over to dinner by Hugh Grant’s character. They are sitting around the dinner table – all of the new and old friends – talking, laughing, joking with one another, and there’s even a serious moment or two. I smile just thinking of it.

THAT is what I desperately miss – the camaraderie of friends, the joy of sitting around a dinner table and just being together.
THAT is the silence of solitary confinement I find most difficult on this journey of being a full time, lone parent carer. 

Last week, I had the pleasure of being on the Echo Chamber Podcast to talk about all things carer. As I listened back to myself speaking, my ever self-critical internal voice cringed. “God…I used to be a much more fluid public speaker” said that voice. And it’s true. Solitary confinement can do that to a carer because we can go literally days on end without speaking to another adult, never mind the kind of conversing had where your intellect is actually stimulated to a level it has long forgotten.

THAT is also what I desperately miss – vibrant, verbal conversations that stretch your mind in ways nothing else can.
THAT is the silence of solitary confinement which, as time goes on, slowly hides away your former self, leaving you to wonder if it will ever been seen again.

Brendan Bjorn is back in his bed here at home now as I type out these fairly random thoughts. My other son, Declan, will be home in just over an hour. Time to get busy. Tomorrow, there will be a meeting here at my house between the new disability team and the previous one. Yes, yes, I will have adults to talk to then. But I just want to talk about something other than caring, at least once in awhile.

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100

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Today is the 100th day that Brendan Bjorn has been bedridden with the pressure sore which has drastically changed our lives the past 12 months. It is the 3rd time it has opened, and it is the longest time period of it remaining open.

I am exhausted. 

In those 100 days, he has only been out of his bed and into his wheelchair for transporting to and from overnight respite on occasion and for 2 trips back and forth from Kildare to Louth for our move. Those seldom trips have worsened the pressure sore each time. Yes, I feel guilt over that and am now considering cancelling the 2 nights respite coming up next week because of it.

I’m not sure what to do.

I need the break, especially considering all I have left to do regarding settling into our new rental home.

But, is it worth it?
Is it selfish?
Am I going to be putting my precious son at more risk for prolonged time being bedridden?

The self-talk of a carer…a carer in crisis, as we hashtag on Twitter.

Two days ago, I gave Brendan Bjorn a shower in the loaner shower trolley which had just arrived. He was far more comfortable in the trolley compared to the old, unfit, unsafe shower chair we have had for years now. However…as the rolling floor hoist cannot be used to bring him from his bedroom into the wet room, it is again – STILL – me who must carry him in my arms from one room to the next. Then, back again after the shower. The hoist is useless in this house and remains idle, sitting in the kitchen as I type this, and is only in my way.

While the shower trolley is a vast improvement for showering, the situation is still not safe for either of us as I carry him precariously in my arms.

So, I dream of a ceiling hoist from bedroom to wet room…and a wet room large enough to accommodate such a dream. If I owned this house, those modifications could be made. But alas, I am merely renting, subject to the insecurity of a lease and restricted on what I cannot do to make this a fully suitable home for my disabled son.

I actually really like this character-filled house that is over 100 years old. And on this 100th day of my son being bedridden, I wish it was the previous 100 that I was celebrating as mine, not the latter 100 which I am writing about with heartache that is mine.

 

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