One of the downfalls of being a writer is that, sometimes, attempting to verbally express what is on the mind doesn’t work so well. Tonight (8 March 2017) I will be on live television to talk about being a full time carer to my beautiful son, Brendan Bjorn, who is severely disabled with a life limiting condition that leaves him medically fragile and completely dependent on me for all of his very profound care needs.
So, in case words fail me, this is what I really want to say.
I have a dream. It isn’t the mansion on the hill or the Jaguar parked in front of that mansion. No. I have a dream of addressing the full Dail chamber – all the Ministers, all the Deputies. All of them. And next to me sits my son in his wheelchair. Here is what I would say:
“What I don’t want: I don’t want to hear from any Minister that it is not in their remit. I don’t want to hear that proper care and services for my son is “subject to available resources.” I don’t want to hear any spin or how the matter will be looked into or how you will do what you can. I want action. I want positive reforms. I want you all to remember that serving the people is why you were elected. And by God, my son is just as worthy of your attention as anyone else. Yet both he and I, as a carer, are left to try and eek out an existence on what amounts to €1.46 per hour for the 24/7 nursing level care I provide. Please, hear that figure again. And now tell me, would you do your political job for that wage? I didn’t think so.
Do I sound angry? Should I apologise for my angry-toned message?
Yes, in fact, I am angry. No, I will not apologise. I won’t apologise because I am fighting for the rights of my disabled son – and for the thousands of disabled children I know across this lovely island of ours. I am fighting for carers (like me) who are working tirelessly despite being so exhausted they often cannot think straight; whose bodies are breaking down (like mine) with the daily lifting and care of their disabled child; who are in chronic pain (like me), but continue anyway; who cannot afford the wheelchair accessible van or proper accessible ramp (again, like me) so must resort to depending on the graciousness of the public via fundraising campaigns.
And I am fighting for the parents who know they will lose their child one day, just as I will, but who in the meantime want to make every moment for their angel as potential-filled as possible…but cannot afford it.
I ask you now, our elected representatives who have children, to think on them at this point. Now, I ask you to imagine that one of them will die. Yes, I said that horrible, unthinkable, devastatingly painful thought. IT IS A FACT I LIVE WITH DAILY. And, it is a fact that my youngest son lives with as well. Yet we have no access – let me restate that – we have no free access to a qualified mental health professional as we live this life filled with palliative care, seizures, and steadily declining health of a little boy we so desperately love.
What I do want:
- A weekend of respite once every 4 to 6 weeks so I can sleep through the night and maybe sleep in until 7am, and on the other weeks, I just want 5 hours of respite once a week so I can maybe go for a walk or take my other son to the cinema. (Currently, the only overnight respite available is through charities. If that is what the government wants to do, I then ask that you properly help fund organisations like the remarkable LauraLynn Children’s Hospice so there can be more facilities across the country to provide the thousands of families like mine the overnight respite we so desperately need.)
- A fair, equitable wage (not social welfare) for the nursing-level work that I do…and I want it to be pensionable because currently carers like me have no security for our future.
- Access to free, qualified, mental health counseling for the family.
- Financial assistance, such as other EU countries provide families like mine via grants, for a wheelchair accessible vehicle.
- An accessible house with a modified bathroom so my son will be safe rather than me carrying him into the bath and setting him on an ill-fitting bath chair set precariously into the bathtub; hallways and doorways wide enough that I don’t have to constantly struggle with his wheelchair and could actually use the hoist that now sits uselessly at the end of the narrow hallway.
- Equality and fair, basic human rights. Families in my world wonder if our children have them. More to the point, we know that they don’t. In this current political climate, is this how you want our families to feel about our special children?
- And for all of the families who have adult-aged disabled children that they continue to care for, even after 20, 30, 40 years, they need proper, high standard, residential care centres for their adult children to live a full, well-cared for life. My son will never reach that stage, but I do hear the plight of these long time carers, and they must be heard, too.
If I could get anything I wanted, it would be to magically heal my son, Brendan Bjorn. But, obviously, I cannot. So what I ask is that for the remainder of his precious life, he be able to have the care, the access, the services, that he so rightly deserves…and that I, as his sole, full time carer, have the supports and means to give him all that he deserves, in this limited amount of time that I have been blessed to have him.
Please, hear this, and hear all the carers across Ireland – all 200,000 plus of us.”
So, that is what I would say as I looked down at my angel boy sitting next to me, surrounded by the Deputies who know me and support me, while I faced the Ministers who do not know me. I might even be inclined to take my fragile, 33 kilo, nearly 5 foot long son out of his chair and place him on the lap of one or two Ministers in hopes of evoking empathy. Unless, that is, they want to accept my long-standing invitation to come to my home for 24 hours and do a round of caring.