It’s the day after Christmas and the house is quiet…for now. Tomorrow, Brendan Bjorn will spend four nights at LauraLynn Children’s Hospice for respite. But, it will be so much more than that. While there, they will help assess if he is to be transitioned to a new level of palliative care on his life-limited journey as his intestinal function continues to decline and he isn’t getting enough fluids.

And as I watch the sun reflect on the windows of the building across the street from me, it feels like more than just another day to me.

I’ve been numb the past week. Nearly emotionless. And for those of you who truly know me, I’m nothing if not full of emotion.

I think my mind is safeguarding my heart right now.

I’m ok with that, because sometimes my heart does need protecting. I can’t crumble. There’s too much to do, to be responsible for, and to take care of: namely, my two beautiful sons. So, today, the day after Christmas, I will prepare for our short journey tomorrow. I will gently bathe my eldest son in his bed, pack his medications, his specialised formula and PEG feeding supplies, his adult-sized nappies, etc, etc, etc.

And, I will try to breathe.

I will also try to remind myself (repeatedly, most likely) that it is ok to feel numb, to be without emotion right now, if that is what it takes to get through the days to come and to be there for those I love.

And it’s time to start the day.
Here is to those days after Christmas, and those days to come.

The past week has been exceptionally hard. And considering things were hard to begin with, that says a lot.

I’ve always been one to look ahead and have a plan or two, set goals and do what I needed to do in order to see them fulfilled. Practical and self-directed in that way, some would say. At the present time, that core part of who I am is wrestling with the reality that there is so much left unanswered about what will unfold in the next number of weeks and months, that it is causing me untold internal stress. In other words, lack of sleep or, when I do sleep, it’s filled with panicked dreams, and when I’m awake I am exhausted and having anxiety attacks.

In short, this is an incredibly difficult time. Here’s why:

I want answers I simply can’t seem to get. And, I want answers to questions that simply cannot be answered because life just has to unfold and be revealed – the present path Brendan Bjorn is on in particular.

So, I try to plan around what, in part, actually can’t be planned. Then I try to plan around what could be planned, but because of lack of services and answers around his care, I can’t do that either. Enter the exhausted, anxiety-filled state I’m in.

Fact: Brendan Bjorn isn’t getting enough fluids since his formula feed was decreased a few days ago. Unless the new gut motility medication begins working and I can increase his feed again, it would mean he needs IV fluids.

Questions: That fact then brings the questions of where and how that would happen? And when? Would it be a permanent care facility as we’ve discussed for when he turns 18 or is this going to be occasionally topping up his fluid levels somewhere and then he comes home? What of the extended residential respite to give me rest and him to receive 24/7 care as his needs have greatly increased with the nigh time vomiting and choking episodes? Will that happen or will he be left at risk at night with his increased medical concerns? No answers. No answers to any of it.

More questions. Is he moving on his journey into a palliative/hospice level of care now? This is a question which is in the process of being assessed, but as it’s Christmas and as we’ve been waiting over a year for a GI (gastrointestinal) consult, who knows when that will happen. And again, I lose hope. And again, more questions. If he is in rapid decline, how will that transition occur and where and when and…and…and…so many questions. Remember, I like to have plans.

Then there are the practical questions roaming without check in my head.

When/if Brendan Bjorn permanently leaves my care and our home – for whatever above reason – I will lose the vast majority of financial supports coming into our home. Then what? How will Declan and I stay afloat? I’m 56 and in chronic pain and waiting on various consultation appointments myself. How could I work full time, and who would even hire me at this point? My professional career is a long lost cause. What would and could I do? Yes, more unanswered questions.

Christmas, one of my favourite times of the year, is in less than a week. I have one beautiful son who is beyond excited and even at 13 sits at the Christmas tree, looking at the presents, and is filled with joy. I have another beautiful son who is struggling to survive, the quality of his life being slowly taken from him. And here’s me. I’m in the middle, trying to plan and trying to take life day by day.

I look up at the sitting room wall covered in family photos as I write this piece. For those two beautiful boys, that’s what this is all about and why I worry about so much left unanswered.

This morning, 4 December 2021, I woke to find Brendan Bjorn had vomited overnight. You see, if you haven’t been following this blog before now, his gastrointestinal system continues to decline. His body grows more frail as his difficult journey finds him now with an Advance Directive to guide his care.

Anyway, not only did I find one side of his neck, shoulder and back covered in vomit, but his face was speckled with patches of petechiae (where the blood vessels under the skin break due to physically straining). The likely scenario is that he was gagging; choking on his vomit.

I was asleep.
I didn’t hear him.
He was alone in his apparent, likely, struggle.

Today I will spend my day monitoring his O2 sats considering the possible aspiration overnight, in addition to his daily complex, nursing-level care needs.

The thing is: I’m not a nurse on schedule with an 8 or 12-hour work shift. I am his mother / carer who must also sleep at night. And so, nights like last night grow more and more common as his health grows more and more fragile.

I fear that one morning I will wake to find he didn’t clear his airway and he will be gone.

Can you imagine that fear? That worry? And even that guilt that resides within me every single day as I feel like I am not – and cannot be – all that he needs? I try to be. God knows how I try to be.

I’ve decided that starting on 1 January 2022, I will begin an awareness campaign on social media to highlight the Real and Raw aspects of being a Carer to a profoundly disabled young adult. It won’t always be pretty, and indeed it isn’t meant to be. I hope to shock some people (public and government) into the realisation of just how complex, difficult, and even ugly (ie: not so pretty) this very high level of care is, especially for a lone parent, aging carer with their own health issues.

So, on Twitter look out for the #RawAndRealCaring hashtag and feel free to follow me at @addressinglife on Twitter and the Profound Ireland advocacy community at @ProfoundIreland starting on New Years Day. Those with the political power to reform the disability and caring sectors of our society must begin to understand exactly how much needs to be changed. Our profoundly disabled loved ones deserve full, proper, equal supports and services. They deserve to have the right to their human rights be met just as anyone else in our society…but they are not. Nor are those of their family carers.

It’s time to change that.

It’s the last month of 2021, a year which, for the most part, seemed a repeat of 2020: Pandemic. Virus. Isolation. PCR tests. Vaccinations. Fighting the system. Not getting services and help. Rinse and repeat.

But, December is a happy month for me. Well, in normal times, that is. I like it.

My birthday is in 12 days and I will be 56 years old. I still can’t believe I am “that” old, but the way I look at it is this: It’s far better than the alternative! Many across the world didn’t live to see another year. I am truly grateful and blessed to still be here, no matter how surreal our world, our lives, have become.

And, Christmas is just 24 days away. I still get excited and feel great joy at the season, all it holds, and all it means. Declan is beaming with excitement, too, anxious to open the presents under the tree. I will cherish this excitement in him while he still holds it in his youth. It’s beautiful.

Finally, New Year. What will 2022 bring for us? We have some plans, and definitely have many hopes, but alas, the pandemic will determine which of those can come to fruition. Hopefully all of them will, because God knows we could use it after the last two years.

It’s been a very, very hard two years.

I know in my heart that if some things don’t change this year, I may not make it in one piece to see next Christmas. That’s the cold, hard truth. The exhaustion of caring has now left me with more health concerns which need explored and treated. I’m waiting – like so many others in this country – for appointments with consultants. I’m actually still waiting for a x-ray of my lungs to happen and it’s been over a month. So, yes, there are some aspects of my family’s life that must change as we hang on by our fingertips, struggling in too many ways.

I’m going to desperately try and hold on to that inkling of hope I feel simply from it being Christmastime. At this point, it’s all I can do.

May December be good to us all.