I think I would be kidding myself if I expected this journey with my son Brendan Bjorn to be one of a clear, straight path. It’s not that I don’t see the joys, the positives, the love. Absolutely I do. Every. Single. Day. It’s in his eyes and his smile each time he looks at me. Such unconditional, pure, beautiful love that fills my very being and keeps me going.

Yet, this past week has challenged my strength to hold on to what is good. 

It has thrust me into a dark chasm within my own soul where light seldom finds a foothold. 

This week, I finally saw the x-ray taken a couple of weeks ago of his spine. There, right in front of me, was my fragile boy’s spine, twisting and turning like this journey we are on. Except these twists and turns are ones I can’t change with the ferociousness of being the Momma Bear that I am watching over my first born cub. These twists and turns are ones that now impact and increase his fragility as they pull one leg further out of socket and push the other leg further into socket where the bones are now clashing together.

And I wish I didn’t understand as much as I do.

I wish I didn’t understand how scoliosis can be so detrimental to other parts and functions in his body.

I wish I didn’t understand that if he was to get scoliosis surgery, his very fragile body might not survive said surgery.

I wish I didn’t understand that this is just one more twist, one more turn, on the palliative journey with my son who I cannot save but for whom I would instantly trade my life if it meant I could save his.

And my heart shatters.

This week did see some good news. We were approved for the housing list. The bad news is that the waiting list for housing in my county (Kildare) is 12 to 15 years. In 12 years, I will be 63, my other son, Declan, will be 20, and Brendan Bjorn will be an angel looking over us. Honestly, I can’t even think about 12 years from now. I am living day to day – sometimes hour to hour – on this journey full of twists and turns. The best I can hope for now is that I will find a suitable rental house where the landlord will take HAP (rental assistance) and the boys and I can have a safe, secure, warm home…at least for the 5 year HAP term. 5 years…in my world, that is a lifetime.

 

For Brendan Bjorn, and for Declan,
I have no choice but to navigate these twists and turns as best I can…
and so I will.
I promise them that,
no matter the darkness encountered. 

 

What would you do if you knew your child was going to die?

I know, you don’t even want to let your mind wander into such a dark, terrible place. But I beg you, just this once, please…please…try and walk in my shoes, if only for the next few minutes.

What would you do if you knew your child was going to die?

You don’t know when – it could be 3 years, 3 months, 3 days, or even tonight – but you know, without a doubt, that you will one day be burying your beautiful, precious child…

Would you give up the fight for as full a life as possible for your child, or would you make sure that he could do and see everything possible within his ability while he still can?

Would you humble (or is it humiliate?) yourself and beg for help to give your child everything they need to make their short life as comfortable, safe and secure as it can be, or would you put your pride and ego in front of your child’s life experience?

Would you crumble under the enormity of the impending loss and surrender to the struggle, or would you daily pick up off the floor what remains of yourself and glue those pieces back together, even if only temporarily?

Would you let pain and anger blacken your heart, or would you allow love to continue to flow knowing full well how vulnerable you’ve become?

What would you do if you were a friend to someone like me
who was going to lose their child?

Would you slowly drift away in a sea of inability to adjust and cope?

Would you turn and run in a sprint to a more ideal and much easier friendship?

Or, would you gather round your friend, steadfast and true, through what is sure to be a gut-wrenching journey?

This is my journey

I know that one day – 3 years, 3 months, or 3 days, no one knows – I will lose my son Brendan Bjorn. I have come to accept this ugly truth that I utterly abhor with every part of my being. It dawned on me tonight as I watched a video about supporting parents of sick kids, that families like mine with children who are palliative have already lost one thing that those families still have – HOPE. Unlike families who can rightly hold out hope for a cure for their child with cancer, I have the weight of knowing there is zero chance of my son being cured. There is no hope in this regard. And that is what I carry around every single moment on this journey. How I wish that hope still remained, and I envy those families that still have it.

This is one hell of a hard journey, and it is not for the weak of heart. I have lost friends and partners along the way. I have lost my home, my own good health, my career, my financial stability and any hope of a secure retirement. But, I will continue to fight for what my son needs in order to have as full a life experience as he possibly can in the unknown amount of time I am blessed to have him. And yes, to answer one of the questions above, I will humble and humiliate myself, if that is necessary, to give my son what he needs, for he is worthy of more happiness than most people I know. He is pure and good and innocent and whole in ways that the world rarely understands.

As for crumbling under the enormity of this all, yes, I do…and then I slowly pick up the pieces of me that remain and I attempt to put them back together again. Another hour, another day, another week, another year, and I continue on because I must, for him, keep it together. I have pain and anger and my heart is fleetingly blackened, but at the end of the day, love flows enough to give me the strength to carry on. While it leaves me vulnerable to more pain, it also leaves me open to soak in all that this journey has to offer.

Parents of a disabled child with complex, profound medical care needs are constantly fighting for timely care, appropriate services, and more support. It is truly a never ending battle that wears us down as we try to keep up with the daily care needs of our child. Adding these battles into the mix only serves to add stressors to an already very difficult journey.

Parent carers should not have to fight for basic equipment and supplies that keep a disabled child safe and healthy.

— Today I spent 2 hours trying to find out why my son’s nappy order was not delivered. He ran out of nappies this morning. I had not a single one in the house. It turns out the PHN (public health nurse) didn’t renew the order last week when I asked her to, telling her at the time he was nearly out. While making over a dozen phone calls trying to sort it all out, I had to resort to wrapping a disposable incontinence sheet, stuffed with kitchen roll, around him and seal it shut with tape. Just call me MacGyver. As it happened, the local health centre had a spare bag of nappies and a very kind neighbour drove into the village to get them for me since Brendan is on bedrest today due to his pressure sore getting worse. I won’t get his nappy order now for another 7 days, so will be seeking out more nappies early next week to get us through until then.

 

There should be more competence by those entrusted with delivery of care for disabled individuals, and children like my son should be given more respect than made wait for something as basic as incontinence products!

— For over a month now I’ve been fighting for my son to get the ordered renal ultrasound done immediately as he is holding his urine for 24 or more hours at a time on a very regular basis, complete with his lower abdomen becoming distended for hours until he floods himself and whatever he is lying or sitting on. The scheduled appointment has him waiting just over 2 months for a simple ultrasound because that department at the hospital apparently is so busy they can’t work in a fragile, disabled, medically complex, palliative, child in any sooner. Oh, unless I take him to the Emergency Department, have him reviewed, and they admit him to hospital. THEN he could get the ultrasound done, I am assured. I’ve seriously considered doing this, but I know it is a gamble taking him into an ED and waiting for hours while his highly compromised immune system is exposed to God knows what in that time. And nevermind that I also have another son I would need to sort out care for so I could be at the hospital for a couple of days.

There should be NO wait for children like my son to receive such a simple, but incredibly important, procedure. 

— For over 2 months now I’ve been trying to raise funds to purchase a safe ramp system for entry into my rental home, but the fundraiser is going at a snail’s pace. I can’t get Brendan inside the door unless my 8 year old son is on the other side to help lift his big brother’s wheelchair over the bottom of the door frame – and even then I’ve nearly fallen backwards, with Brendan in his chair, countless of times. Coming out of the house I must hold onto the door jam so not to lose control on the steep, short ramp.

There should be help in purchasing a safe ramp system for families like mine, for the sake of the disabled child. 

— For nearly 3 years I have rented privately, which means the bathroom cannot be modified into a safe, accessible, wet room for my son. I can’t afford to buy my own home and I am not on the council housing list, which even if I was, I hear it is many years long. I can’t even use a hoist to lift him in and out of his too small, unstable bath chair. This must change. It is unsafe for both me and my son. But what is one to do when there is no governmental assistance in this regard?

There should be help made available for families like mine who, because they rent privately, don’t have access to county council assistance. 

 

A carer’s constant fight.
We should not have to fight for these basic human rights of
dignity, safety, and timely and appropriate health care.
Why do we have to fight so hard?

The last two nights my son Brendan Bjorn has been cared for at LauraLynn Children’s Hospice in Dublin. I get 15 nights of respite per year thanks to this wonderful charity. The other 350 nights per year I am on my own, out of luck when it comes to sleep as I need to get up an average of 2 or 3 times each night to attend to my son, and there is no overnight respite available elsewhere.

I am exhausted.

Many people think I’ve had an opportunity to rest the past few days. What they forget is that I have been busy running around Dublin with my other son to give him time alone with me. Yes, of course, it is fantastic to spend this special time alone with him. He needs it and I need it. But guess what? I also need time away on my own…but I cannot get it. I need it. I want it. I can’t have it.

I am not recharged, refreshed, or relaxed. 

The first 3 days of next week, each day has a medical appointment. Back up to Dublin Monday, then Naas on Tuesday and Wednesday. The week after that, I actually have a procedure requiring sedation and I’m scrambling to sort out transportation to and from, and hoping I will get home before the boys return from school. Oh wait, that is if Brendan can continue going to school after next week because his pressure sore is once again becoming tender and red and looks about to break open…again. That means being bedridden…again. That means me being housebound…again…for God only knows how long.

I am scared and angry.

Last week I received the very unwanted news that Brendan’s scoliosis has drastically increased. Also last week, one of his 3 seizure medications had to be increased because his seizure activity has increased. He still is only urinating once every 24 hours or more yet still is having to wait over 2 months for a simple renal ultrasound to be performed. I am angry. I can’t help but wonder if he was able to talk and tell the doctors what that feels like, would he get the ultrasound done immediately? I bet he would. And if his scoliosis needs surgery, how long will he have to wait? Or, will he even be able to tolerate surgery? He is so fragile and growing more so each passing month, that I know he may not be fit for surgery. I am scared.

Back to reality tomorrow? In fact, I never actually escaped reality. It is always, always, heavy on my mind.

I have paid attention to politics since I was a teenager, and that my friends, was more than just a few years ago. My earliest memory regarding anything political is that of standing in my childhood home looking at scenes of the Vietnam war on the television and my mother explaining what was going on. I must have been 6 or 7 years old. I remember seeing the bracelets engraved with the name of MIA/POW soldiers that were worn by family members and I remember the protest songs on the radio. To this day, I still remember most of the words to those powerful songs.

Over the years, my sense of fairness and justice, especially for those who are oppressed or vulnerable, has grown tremendously. And whether it is ironic or not, nowadays I find myself immersed in the politics of my adopted homeland, Ireland, and raising my voice as an advocate for children with disabilities and their family caregivers as I am personally one of the thousands of families walking this challenging journey with a disabled child.

Why, many people ask, do you care about politics so much when you have your hands so full as a lone-parent to 2 young boys, one of whom is severely disabled, medically fragile, and in a palliative condition? 

Here is my answer:

I care about politics because in many ways I abhor politics. A bit of an oxymoron to be sure. But one must realise that if politics – and the elected political representatives – are ignored and left to their own devices, we can end up paying a very heavy toll. Certainly not all politicians are unscrupulous. In fact, I know and respect a number of politicians on this amazingly beautiful island of ours.

Having said that, the current state of affairs for families like mine is mainly one of struggle, desperately fighting for timely and appropriate medical care; waiting lists that add pain and suffering to the most vulnerable in our society; a lack of respite, overnight respite, and long-term care solutions for disabled children and their families; a lack of appropriate housing; a lack of useful home and vehicle modification grants/schemes for the disabled and their families; and, lest we forgot the family unit as a whole, an utterly unfair and borderline inhumane treatment of families who are left isolated caring for their disabled loved one, having been forced to give up their career, their savings, and any hope of retirement.

Families with a disabled child who are working as fulltime caregivers to their child (no matter the child’s age) are crying out for help from our government and their voices are not being heard. Platitudes are given. Public statements meant to appease are given. But all the while, nothing changes.

I care about politics because I care. I care what happens to my son, Brendan Bjorn. I care what happens to my younger son, Declan. And yes, I care about what is happening to me, as I wrestle with depression and anxiety and health issues of my own that are inextricably linked to being a fulltime carer without the supports mentioned above. I care about all of the disabled children of all ages, and their families, as we are all linked on this journey we walk together.

I care about politics because I care about the direction our country is going. So many scandals, tribunals, inquiries. So many homeless. So many on trolleys. So many on waiting lists, including my own precious son. So many voices being ignored for far too long – from carers like me to the disabled to the homeless to those struggling with mental health issues to the courageous whistleblowers, like Jonathan Sugarman  and Maurice McCabe, who are trying to do what is right and just to make this a better place to live.

We should all care. It truly is as simple as that.

Can you imagine how much better our beloved Ireland would be if our – and our politician’s – main character attributes were integrity, compassion, empathy, and a sense of duty to look after those who are more in need than ourselves?

Yes, we should all care, because at the end of the day, we are all just one accident away from disability, one economic crash from bankruptcy, and one tragedy away from homelessness.

I care about politics because, for me, sitting back quietly and doing nothing is not an option.

 

 

Caring can hurt. It can hurt like hell. And this morning, I hurt. No sugar coating or mindfulness today in this post. Just real life thoughts and emotions.

I awoke to the sound of Brendan Bjorn’s seizure mattress alarm going off over the baby monitor. He was in a tonic/clonic seizure with very hard convulsions. His 02 dropped into the 50s, complete with extremities turning blue, and I readied the rescue medication. He came out of the seizure just before I administered the medication, his O2 returned to normal, and he slipped into a hard-shaking postictal phase. I leaned over his bed and held him in my arms, gently stroking his hair, telling him it was ok. 20 minutes or so later, he stopped shaking and drifted off to sleep.

My back, complete with discs that are degenerating in a number of places, hurt.

My heart, complete with a mother’s love for her first born child who she will one day lose, hurt.

My mind, complete with the overwhelming stress of fighting for timely, appropriate care for my son, fighting to make ends meet financially, fighting to keep my other son happy and content and secure, hurt as it spun in a myriad of swirling thoughts and emotions.

My body, complete with the newly diagnosed very high cholesterol, low thyroid, and return of higher than normal rheumatoid factor thanks to the auto-immune disease of rheumatoid arthritis, hurt all over as it just wanted to go back to bed but knew it wasn’t allowed.

My soul, complete with the wide range of emotions that come with this difficult journey, hurt.

I sit here now as I type these thoughts and I watch my precious angel over the video monitor next to me on the couch. And I wonder…oh how I wonder…about so many things…

I wonder if I will get the energy up to do the exercising that my GP has requested I begin doing on a more regular basis. I know I must, because I must keep my health as good as possible so I can continue to care not only for Brendan Bjorn, but for my youngest son as well. I wonder if there will be another seizure today. I wonder if we will end up in the hospital. I wonder if Brendan will receive timely care for his just discovered drastically increased scoliosis. I wonder if his pressure sore will begin to heal or will it worsen. I wonder if anyone will ever recognise what family carers like me go through on a daily – hourly – basis. I wonder if all this fighting just to survive will ever ease.

And, I wonder if our life will ever be secure, peaceful, stable, and without so much hurt.

My son Brendan Bjorn is 12 years old. He has very complex, profound care needs, which I provide on a daily and nightly basis as a lone-parent Carer. The care level he is at is referred to as Palliative Care. In short, his condition is life-limiting and the care level he is at is no longer one of attempting to heal or cure, rather it is one of making his life as whole, comfortable, painless, and as fulfilling as it can be.

What Palliate Care means…

Palliative Care is to be a holistic approach which also includes the family members.

Palliative Care is meant to integrate the psychological and spiritual aspects of care, including grief counselling, prior to loss.

Palliative Care is intended to enhance the quality of life and allow the person to live as actively and as fully as possible.

Palliative Care is meant to be a team approach, to involve a support network of doctors, therapists, social workers, mental health professionals, nurses, and various social supports.

Palliative Care is meant to provide the best quality of life possible for the person with the life limiting condition – and their family – while they walk on this journey together.

What Palliative Care does NOT mean…

Palliative Care status does NOT mean the person, in this case my own precious son, is to be given up on, set aside with no hope, and thus put at the bottom of waiting lists for care.

Palliative Care status does NOT mean that my son doesn’t deserve the chance to have as FULL a life as he possibly can. Yet – and this may ruffle some people’s feathers – I see time and time again that some agencies, charities, government bodies, and even the public (for example, via such tools as online fundraisers), are much less willing to assist in providing needed care items or support for a palliative child compared to a child that does have hope of surviving into adulthood. In fact, I have had people actually say that directly to me. And you know what? After 12 years on this journey, I believe that to be generally true. But hear me:

Just because my son is in the Palliative Care level of his journey, it DOES NOT MEAN he isn’t worthy of LIVING LIFE TO IT’S FULLEST POTENTIAL. Nor does it mean he isn’t worthy of obtaining the special equipment that will facilitate him having that fullest life experience possible – items such as a proper ramp into the house, a safe bathing system, a reliable and safe wheelchair accessible van, and a home modified for hoist and wheelchair usage.

Palliative Care does NOT mean my son will die tomorrow – God forbid. Yes, he could do, and that is the hard, cold fact that I am faced with every single day. BUT HE COULD ALSO LIVE FOR 2, 3, 4 OR MORE YEARS TO COME! No one knows, no one can predict when that time will come, so in the meantime, his life should be surrounded with the gold standard ideals of what Palliative Care is all about, and to do anything less is simply inhumane. 

Palliative Care does NOT give license for anyone to give up caring about my son. In particular, many government policy makers who seemingly would rather ignore his many profound, complex care needs. I am often left wondering, do they secretly hope he will pass sooner rather than later to become less of a “burden on the State” or do they just not care about such sick children at all?

Palliative Care does NOT mean the family’s needs should be ignored. In fact, it is written into that gold standard of what Palliative Care is to be as written by the World Health Organisation. Yet, if that aspect of proper Palliative Care is ignored, it is not just the person with the life limiting condition that will suffer, but it is the Family Carer and the family as a whole unit that will suffer, all which ultimately diminishes the level of care provided to the person who needs it most. In this case, my son, Brendan Bjorn.