Today is Brendan Bjorn’s last day of school for the 2016/2017 school year. Please don’t ask me what class he is in, because I honestly don’t know. I don’t think he has a class, per say, but in his special school is simply in a classroom with other children of similar care level. Yes, that hurts to think about, so no, I don’t like that question.

It will be a very long two months of school holiday for the summer. 

I no longer think of it as a “holiday” because what it means is that I won’t even get the rare few hours 3 times a week (that is, when he was actually healthy enough to attend school part time) to run errands, breathe in silence, or catch up on the endless housework that comes with running a small hospital.

There is always the 10 hours of respite per month. 

When people ask me how much respite I receive and I tell them 10 hours per month, without fail their mouths drop open and they then proceed to colourfully comment on what a shameful situation it is and ask how could I carry on alone without proper help. I nod, I say I agree, and I say I don’t know how I will carry on. And if I was to be totally honest, I don’t find the 4 or 5 hours of respite every couple of weeks to provide any relaxation. I come home to find items in my fridge in places I don’t normally keep them (which makes me feel somewhat intruded upon) because the nurse has obviously used something in there for her lunch. I come home and clean because I have an anxiety issue around “strangers” using my toilet. I know, I’m a bit mad in that way, but you’d understand if your first born child’s brain was severely damaged by a common virus and will ultimately die before he sees 18 because of the damage that virus has done. So, no, it is not the type of respite I need or want.

And today, as I think of the next 2 months, I honestly don’t know how I will carry on.

I have so many battles all going on at the same time right now that I feel like I am losing the war. I can’t pick my battles because all of them being fought are ones that MUST be fought – they are issues of life and death, of human rights and protection, of avoiding homelessness while desperately trying to create a stable, safe, loving home in which my two sons can securely live in peace. Behind the scenes and unknown to most who know me or my story, there is a battle which wages on and is beginning to bring me to my knees. It could be ended with one simple signature, and it is what I hope, pray, worry and fight for and about daily. But while I am being brought to my knees, I have faith in those around me who are dedicated to picking me up and helping to dust me off so that I can continue on – for my two beautiful boys – to see life win over death and human rights win over what would be a grave injustice.

Even so…I am blessed.

I am blessed by friends, old and new, who stand by my side providing support, kindness and love. I am blessed by the honour of having two awe-inspiring, amazing, beautiful sons who fulfilled my dream of becoming a mother. There are countless ways in which I am blessed, even amidst these tiring battles, I will always remember my blessings.

So, dear reader, even if I do fall to my knees as these battles wage on, please know that, for these two boys, I will always rise again.

 

Some hard questions. Some suggestions. Some possible solutions…

The questions…

Do you, the member of society reading these words, view my son as inferior?
Do you, the members of society reading these words, think of me as someone not worthy of investing time and energy in knowing because I focus so intently on trying to survive on this journey with my son who has such complex and profound medical conditions and needs that I can be hard to socialise with or get to know?

Do you, the leaders of government who decide policy, view my son as a burden on the State, a “lesser-than” human being who will never be able to contribute financially into the system?
Do you, the leaders of government who decide policy, think of me as an additional burden on the State (along with my son), because at this point in time I have had to put my professional career on hold to care 24/7 for my disabled, palliative son?

Do you, the taxpayer resentful of paying taxes to help lift up the less-fortunate, resent my son because your taxes help to keep him alive?
Do you, the taxpayer resentful of paying taxes to help lift up the less-fortunate, resent me because as a full time carer I no longer pay income tax via an earned wage?

The suggestions…

If you, society, haven’t had the opportunity to meet, interact, and get to personally experience the love of a special needs child, I suggest you do. This isn’t a rose coloured glasses view of this journey, this is a sincere suggestion because I firmly believe that if you view my son and other children like him as inferior, you have missed one of life’s greatest lessons of compassion and unconditional love.

If you, the government, view my son, me, disabled children or adults, and their full time unpaid carers as burdens on the state who only take and never give, I invite you to meet with me and other parents and organisations, such as Profound Ireland , who are leading the way fighting for reforms and fair, equal rights for the disabled and their carers that will be of benefit to all considered.

If you, the resentful taxpayer, still resent those unable to contribute to the tax base via income tax contributions, no matter what logical arguments have been put before you, I implore you to examine how many millions of euros unpaid carers save the system each and every year by the tireless work they do in lieu of the State providing care assistance.

Some possible solutions…

If carers were fairly remunerated with a pensionable wage equal to the level of caring work that they perform, they would be able to pay income tax, no longer be relegated to the often frowned upon “social welfare recipient” status, and be able to join the private property housing market. There would be less of us on the social housing waitlists. There would be more of us on a livable wage recirculating money into the economy. And there would be the knock-on effect of carers having less mental health issues due to the current incredible financial stress, thus helping relieve an already struggling mental health system in Ireland. In fact, I go so far as to suggest that many physical and medical issues would also be avoided by not having these current financial and related emotional stressors.

A disabled child (of any age) should not be consigned to poverty because society or the government – or both – sees them as being inferior.

Nor should families be consigned to poverty because the parent(s) had to give up their paid professional career to provide full time caregiving to their disabled child, especially considering the parent(s) are given no other options such as full-time nursing care which would allow them to continue to work full-time.

And understand this clearly, if the disabled were not considered inferior, we would not be in this position of poverty. 

It MUST be understood that full-time, unpaid, family carers such as myself have had no choice but to enter into this role. It MUST also be understood that many of us are performing work equal to that of professional nurses, physios, occupational therapists, pharmacists, and more…often all of those professions combined into one role carried out around the clock with no supports. Many of us are highly skilled carers who have levels of experience that in the employment market would demand a wage which would provide a very decent standard of living.

Carers should be paid a pensionable wage commensurate with the level of skilled work they perform.

If the system, services and policies surrounding the disabled and their carers continues with the status quo, the long term economic cost will undoubtedly be far greater than if the above suggested reforms were implemented. The current system perpetuates poverty (both presently and in the retirement years as carers with no pension become elderly); it perpetuates a dependency on social welfare; it contributes to increasing mental and physical health issues within the family units; and, it contributes to the discriminatory and oppressive societal views of the disabled and their family carers as being inferior, unworthy, and a burden to be resented.

It is past time for reforms to be made,
but it is never too late to make those reforms. 

 

For those of you following my blog, you know that I have been desperately, and unsuccessfully, searching for a new home to rent using HAP (the rental assistance program). In my last piece, I mentioned learning that my sons and I didn’t get selected for a home we applied for because the owner knew someone else who had applied. Well, as irony would so have it, yesterday – upon returning from the Homeless Demonstration in Dublin, I got word that again we didn’t get selected for a house we viewed just the day before. The reason given was that there were many suitable applicants and she could only choose one. The disappointment I feel is nearly beyond description.

I am left wondering if landlords have a heart at all.

The rental market in Dublin and the commuter belt area where I live – and need to stay in for Brendan’s medical care and services – in north county Kildare is brutal. I’ve seen group viewings of only a 20 minute timeframe. I’ve seen houses for rent in the area at 3 and 4 times the price compared to other areas of the country. I’ve had estate agents tell me the owners won’t remove the furniture out of what would be Brendan Bjorn’s bedroom so that I could put in his medical bed and equipment. Seriously, it cannot get much more inconsiderate and selfish than that, can it?

Finding a house to rent that is suitable for a person with disability and all their needs is painfully hard to do. 

Don’t get me wrong, there are suitable houses out there. I’ve seen a number of very suitable bungalows for rent – but at twice the amount allotted by HAP, if not more.

This leaves me asking WHAT ARE FAMILIES LIKE MINE TO DO?

If we become homeless, Tusla will be notified because of Brendan Bjorn’s very fragile, complex disabilities and health. I understand that, and frankly, as a mental health professional who has dedicated her entire career to helping children, I fully agree with that happening. Having said that, if Tusla is called in because we become homeless, that would likely ruin any chances I have of one day re-entering my profession working with children. It is a double-edged sword of which I don’t want to be impaled. 

I believe in the power of the people. I believe in politics being able to bring about positive change. I belong to a political party that shares this belief and works toward that greater good for the people of Ireland. While I used my seldom given respite nursing time to march alongside these individuals, I felt the community spirit that is what will save this lovely country of ours. It has to save it. Families are suffering far too much and depend on folks like this to help them. Families are being torn apart, discarded, and forgotten.

And dare I say, those of us who must add disability into our family equation and our search for appropriate disabled-accessible housing are suffering even more so. 

My 9 year old son, God bless him, is being hit hard emotionally by this insecure, unsettled, search for a long-term house to call home. He is struggling, forced to be a part of adult issues of which no child should ever have to concern themselves. It isn’t fair on him, and as his mother I feel terrible guilt and pain at not being able to relieve him of all his worries. And then there is my precious angel Brendan Bjorn, who lives in a constant emotional world of innocent happiness and doesn’t realise the storm we are in. That is certainly one aspect of this journey for which I shall be forever grateful.

So, the search for that long-term, safe, suitable, home for my little family continues… 

 

Carer’s Week is just about over. I’m not sure it really started for me. It was just another week. Another week of me struggling to keep my head above water as I fight for proper, timely care and services for my son Brendan Bjorn. The waves continue to crash down on me and my sons, and at times I am not sure I can reach the life buoy. Yes, it is Carer’s Week and it doesn’t mean anything special to me as a full time, lone parent carer…and I find that disappointing on many levels.

Day One of Carer’s Week:
By noon on the first day of the week, I learned I didn’t get selected for the rental house we applied for because the owner knew another applicant. I also learned that the urgent spinal fusion operation my son desperately needs would be a wait not of 4months, but of 15 months or longer. The day also marked Day 30 of Brendan being on total bedrest due to a pressure sore at the base of his bottom, not allowing him to sit in his wheelchair. That of course also meant Day 30 of me being housebound. (And people wonder why I seem a bit mad?) The day finished up with me having to miss the viewing of another rental home because I only learned the viewing was that very evening, and only for a mere 20 minute timeframe. Another house gone. And on yet another house for rent, I was told the owner would not remove the furniture out of the ground floor bedroom so that I could put Brendan’s medical bed and equipment in what would be his room. Strike 3 on the houses. Lastly, more vomiting as his gut won’t accept feeds fully, no doubt complicated by the force of his body crushing down upon his gut with the scoliosis. Feed rate slowed down again in attempts to help.

Day Two of Carer’s Week:
Day 31 of Brendan Bjorn being bedridden and me being housebound. I received a call from the Urology registrar (the one I thought was the consultant until at the end of the appointment when he told me the consultant left 20 minutes before I arrived and he was just the registrar!). The registrar told me the consultant (again, who has never met Brendan) wanted him to be inpatient for 3 or 4 days to teach me how to catheterise Brendan every 4 hours. I was stunned as this is not what we had discussed. I then rang the Paediatric Nurse Liaison, and in tears told her about the call. It turns out that the registrar and consultant didn’t even confer with Brendan’s paediatrician. No, he wasn’t going inpatient. In fact, he’s being referred to a different urologist. The evening ended with more vomiting and again an even slower feeding pump rate.

Day Three of Carer’s Week:
Day 32 of being housebound while Brendan Bjorn is still bedridden. Spending the previous 2 days trying to keep formula down, I once again – for the 3rd day in a row – had to lower the speed at which feeds enter his body. More vomiting and he didn’t even get his daily total due. I rang the scoliosis surgery scheduling office. The referral to be placed on the waitlist hadn’t even been made yet, but sure it’s only been 2 weeks. Ugh! Next task was emailing the Minister for Health, Simon Harris. I have yet to hear a reply, but a number of supportive tweets have been sent his way by other people asking him to reply to me. So, fingers crossed, he will. I won’t be giving up, anyway. Another call to another nurse for supplies. I finished last night, day 3 of Carer’s Week, cleaning up more vomit before going on a Twitter chat about caring. Frustration overload.

Day Four of Carer’s Week:
Today! 

I’m just off the phone with a TD’s office staff to discuss the scoliosis surgery waitlist. He’s suggested that I email every TD in County Kildare. So, it looks like that will be my task for the day in between caring for Brendan and searching online for a home to rent. Oh, speaking of which, there was one house – a bungalow!! – that came up on Daft today. Problem? It is €1,750 per month and HAP only provides €1,050 per month. I cannot afford the €700 per month difference. So, it looks like another very rare chance to rent a bungalow home suitable for Brendan’s many special needs will go by the wayside.

Oh yeah, and it is Day 33 being housebound. 

Tomorrow will be the end of Carer’s Week. It means nothing to me now. I will take Brendan out of his bed in the afternoon so that we can go look at a rental property I should be able to afford. It is not a bungalow. In fact, his “bedroom” would be the area at the side of the kitchen where the dining room table normally goes. But, if we get it, it will have to make due…because it is better than being homeless.

Carer’s Week.
The problem is, no one cares for the carer while they fight to provide the best care possible for their precious loved one. 

And for my Brendan Bjorn, I will fight like hell.

 

 

This morning I scrolled through my Facebook memories app that shows what was posted on that day however many years ago. I haven’t spent much time on Facebook lately, preferring the less drama-filled and more politically-minded social media of Twitter. Must be the “always advocating for social justice” spirit in me. Anyway, Facebook memories…

One memory popped up on my timeline that brought me to tears this morning.

I know, I know. I’m not exactly one who hides their emotions, be they tears of joy or tears of sadness. And this must be the “bleeding heart that’s worn on my sleeve, love and peace and can’t we all just get along” spirit in me. Anyway, back to the Facebook memories…

It was something my youngest son, Declan, said when he was just after turning 4.
Yeah, FOUR YEARS OLD!

Declan has always been different. He possesses a truly innate compassion and other-worldly understanding of life that at times blows me away. He’s definitely an old soul if ever there was one. I had forgotten about what he said, this Facebook memory post from 2012, until this morning as I scrolled down memory lane with coffee in hand.

Then it all came flooding back to me.
That’s when the tears started to flow, both in joy for who Declan is and in sadness for the raw emotional truth surrounding what he said.

So, I just want to share this with you, those of you who read my blog and have been so kindly following my journey with my beautiful son Brendan Bjorn. I’m sharing this because, well simply put, I think it is awe inspiring and comes from such a place of unconditional love that most of the world rarely sees – or allows themselves to see.

I would wish for all of us, that we hold onto these moment, these memories, and let them touch our hearts, filling them with what can only be described as love in its purest form.

So with that, a cherished memory from 2012, courtesy of my son Declan…

 

 

All one has to do is pick up a newspaper, turn on the news, or go on social media and it’s clear – there is a real struggle between those who are well to do and those who are desperately trying to make ends meet…or even just trying to find the ends, forget trying to make them meet. When disability is thrown into that equation, the struggle becomes even more pronounced. The extra costs to a family that come with having a severely disabled child are often unseen, unconsidered, and not understood by those who could help alleviate this seemingly endless struggle to survive. These costs aren’t just monetary, though. Often times, families such as mine struggle in other ways.

I’ve been searching for a suitable, accessible, rental home that will be closer to Brendan Bjorn’s school in north county Kildare and his medical services in Dublin. As his health declines, this is a vital move. It is also a financial move, as I cannot afford rent out of pocket – my pockets are empty – so I will be using the assistance of HAP. As it stands, the rental market is troubled with low supply, high rent prices, and inadequate rental assistance amounts. Now, imagine adding to those challenges the necessity of it being a disability-friendly home. That means a newer build with wider doorways and hallways, a bungalow or a 2 story home with a full bath and bedroom on the ground floor (nearly unheard of), and well-insulated to guard his fragile health. Oh yes, and somewhere close in cost to the €1,050 that HAP allows. I’ve phoned and emailed a number of letting agents. Many have been, how shall I say, not very helpful. Many don’t reply and those that do basically tell me it’s an impossible ask. I know what I require is complicated, but what can I do?

And I am left wondering if the only time those with the power to provide proper assistance for families like mine are actually able to put themselves in my place…and I don’t mean the disabled parking place.

I am left wondering if anyone truly understands the position that families like mine are left in when in need of a suitable, accessible home?

Might I suggest here that a committee, or some type of official, national body, that assists families with disability housing needs be formed as soon as possible to help these families locate a home. 

On another note, next week is Carer’s Week. There will be a wide variety of events across Ireland for carers to attend – lunches, coffee mornings, walks, pamper events with manicures and massages, nights out with music and dancing – all to celebrate and treat the much deserving carers. But, how many of the nation’s carers can attend? I can’t. I’m housebound while my son is bedridden. I have no one to relieve me so I can go to any of those events.

I will spend Carer’s Week caring. And I won’t be the only one, I am sure.

I don’t think carers in my situation, that of being a lone-parent carer, are considered when it comes to scheduling events for carers. If we were, there would be respite nursing made available. There would be spa vouchers given to homebound carers to schedule a bit of pampering when their schedule actually allows. There would be a gift basket or a gift card sent to the housebound carers home, just to let them know they are not forgotten.

I am left wondering, did the organisers truly try to put themselves in our place? 

Look, if the organisers of such well-intended events for carers are not even fully understanding the isolation, the struggle, and the inability to get out of the house that disability places on the entire family, then how can we expect the government officials who are not touched by disability, to understand? Having said that, I do not believe it is an excuse for either or them, or for anyone, to not understand. I believe in the greater ideals of community spirit, togetherness, and support through understanding. Maybe I’m not realistic in my beliefs, but I’d like to say it would make this world a far better place if more people shared those beliefs.

The most vulnerable should not go unheard or unassisted.
There must be equal, fair, humane treatment and rights.
There must be understanding.

Those with the power to make a difference
need to put themselves in our place,
and not just when they park.

 

If a tree falls in a forest and no one is around to hear it, does it still make a sound?
If a mother cries out loud and no one is around to hear it, does she still make a sound?

A few days ago I took my son Brendan Bjorn to an Orthopaedic consult appointment to review his worsening scoliosis and hip conditions. I stood there chatting with the consultant, and like the professional special needs mother that 12 years on this journey has evolved me to be, I asked all the relevant questions…

Spinal fusion surgery?
As a matter of urgency on a priority status?
Because his severe cerebral palsy has left his trunk with no muscle tone whatsoever?
Ok…ok…

Ok, is this a rod or fusing the spine or what? A rod, complete with screws, plates, et al.
Ok, will it be able to be lengthened? No, not at this age.
Ok, he doesn’t tolerate anesthesia well, how long is this surgery? It is very long, but you will be meeting with the anesthetist to discuss the procedure and voice your concerns.
Ok, how long will he have to wait for this urgently needed operation? I don’t know. There is a waitlist, but we want to get it done before his scoliosis fixes and becomes far more difficult to repair, and far more difficult on him.

Ok…I was ok, but now I’m not ok.

I was OK for a couple of days, but last night it hit me – this is a very risky operation, especially for a child as medically fragile as Brendan Bjorn. While on an intellectual level I completely understand that this operation will greatly improve his quality of health, and therefore the quality of his life, on an emotional level I am terrified in my understanding of possibly losing him during this procedure.

And I cried out loud.
No one heard me. 

At the end of the day, I will go forward with the spinal rod being surgically placed in his back. If I don’t, his spine will continue to crush down upon itself, in the process crushing down on his internal organs, including his lungs, and his lower ribs will continue pushing down on his pelvic bone. If I don’t, the pain and discomfort and related medical problems will only continue to increase. I couldn’t bear to think of that happening, just as I can’t bear to think of the worst happening as a result of anesthesia complications. It is a decision I haven’t made lightly, but now that I have, I hope the operation can be done very soon – before his spine fixes in the twisted, curved position it is in now and before it does more damage.

Tomorrow is another day. Tomorrow I take my son back to the hospital, this time for a urology appointment to discuss why his body has started to hold urine for 24 hours at a time and what can or can’t be done about the situation. At least it will take my mind off of everything else we face currently, even if for only that moment. Tomorrow evening, I will probably cry out loud again as these things that weigh on my heart and mind will come flooding back to me in the silence that surrounds me after my boys are asleep.

If a mother cries out loud and no one is around to hear it, does she still make a sound?

 

Brendan Bjorn has been home from the hospital for 7 days now. It’s only been 2 days, though, that his body has been able to accept full strength formula at the normal pump rate. It’s also 7 days now that he’s been bedridden in an attempt to get the pressure sore to heal before he can again sit in his wheelchair. It is healing, albeit slowly.

As for me, I’ve been house-bound for 7 days now. I think many people tend to forget about that part of our journey. They don’t think about what that does to me or my mental health.

And what about my 9 year old son Declan? All he’s seen the past 7 days is his school and home. I sometimes think, at least he gets to go out for a bike ride to school and back.

It isn’t enough.
It isn’t enough for Declan, and it isn’t enough for me.
7 days you might not understand.

We did actually get out for an hour a couple of days ago. We went to look at a rental home. Not just any rental home, this one was a bungalow with all the bedrooms and a bathroom on the ground floor. For a family with disability, this is an amazing find. A new start with a long term 3 year HAP lease. They even suggested putting in a cement ramp at the front step for Brendan. I was over the moon. Declan and I walked around the house – our second visit to the home – and decided where his bed would go, where this and that would go. We walked around the neighbourhood and saw all the local kids playing who could become his new friends. We drove home looking forward to our future…finally.

Later that evening I took out the lease to look it over and sign it. Tucked away on the tenth page of the 19-page lease was one sentence that killed all we looked forward to: “Unless the Landlord previously approves in writing, not to keep any pets in the property.” My heart sank. I re-read it. Ok, I thought, it sounds like I might just need the written approval first. I grabbed my mobile and texted the owner…and waited anxiously for the reply. It was a no. A flat out, unbending, no. I pleaded. I offered more deposit money. Again, no. And with that, we lost only the second bungalow rental we’ve been able to find.

I of course had to have a talk with Declan. The first thing he asked when I told him the news was why the owner hated us. I explained it wasn’t us, it was just that they don’t want our pets in the house. The next thing he said was that he wasn’t getting rid of his cat, who indeed was lying there next to him on his bed. He had tears in his eyes. No baby, you’re not getting rid of your cat.

7 days.
It has been a very long 7 days stuck inside a house.
You might not understand.

There is a book’s worth of information that could be written about the strains on emotional and mental health that result from all the challenges  that come with this journey of having a child who is severely disabled, very medically fragile, and palliative with a complex life-limiting condition. I’ve covered some of those issues in previous blogs: Depression, anxiety, loneliness from social isolation, and diminished sense of self-worth from having to leave one’s professional career behind to become a full time carer. These are just some of the main challenges family carers like me face on a daily basis.

There is plenty that people outside of this journey don’t understand. One of those very important, and seemingly not understood, aspects is this emotional rollercoaster that families like mine are on. We are often hurting. We are often depressed or filled with anxiety. We are often grieving – grieving a life we aren’t equally free to live and, for me and Declan, grieving what we know will be the loss of our most beloved Brendan Bjorn.

You might not understand.

Last week when Brendan Bjorn came home from hospital, I had a heart-to-heart talk with Declan. I asked him what his wishes are for when it looks like “that day” for his brother comes. Can you imagine having to talk to your 9 year old child about the impending death of his big brother? Let me tell you, it is gut wrenching. This is the nature of our relationship, though, me and Declan, and he took it well and held my hand as we both cried. Yes, he absolutely wants to be there if he can. Yes, we don’t want it to happen for many years to come. We are a strong little family, me and my two sons.

This morning before school, Declan randomly went up to his cat, Magni, who was curled up in a ball asleep on the couch, and he said, “I love you, Magni. You’re not going anywhere, don’t you worry.” And with that, it all came flooding to me: We need these pets. Magni is Declan’s rock, his soft place to fall, his friend when no one else is around. And my dog, Thor, is the exact same for me, as well as being the guardian of the house who makes us all feel safe. No, they won’t be going anywhere, Declan, don’t you worry. We need them as much as they need us.

It’s been 7 days you might not understand.