As I type this difficult blog piece, it is a quiet Tuesday morning. My youngest son is still soundly asleep in the comfort of his bed. My eldest son, Brendan Bjorn, is in Dublin for a few nights at the only Children’s Hospice in Ireland. He’s there on a “crisis admission” so I can have some respite. I look at that word, crisis, and my first thought is that it’s too dramatic. In fact, it isn’t, for how else are we to describe that point of exhaustion after 17 years of lone parent, nursing-level caring, when the carer says aloud, I don’t want to do this anymore?
It is indeed a crisis.
I wrestle with not wanting to do this anymore to feeling like I simply can’t do this anymore. I’m not really sure which one it is. I only know that I am exhausted, my body is aching, my mind is weary and my spirit sees the point of either breaking or being free again to be what it could be, or should be, to live fully; not merely exist as a carer working around the clock with no end in sight.
Is there an end in sight? When is it? There is no answer.
Brendan Bjorn has, since my last blog piece, had his formula feeds slowed even further, his gut unable to handle what it was even a few weeks ago. He’s now down to 40mls per hour. I’ve spoken with the relevant members of his healthcare team and disability team. I’ve asked for an advanced directive to be written up now, before he might turn 18 in just 15 months time. It needs to be done while I’m thinking from a place of logic, not emotion. My precious, beautiful son has been through so very many struggles on his journey. He doesn’t deserve to go through any more of them. He deserves quality, comfort and to simply be surrounded by love – not invasive interventions or pain or yet even more operations.
No, he’s had enough done to him to prolong life. Now is about peace and comfort.
Until that time comes…whenever it may come…I must also consider myself. How can I carry on this work? For how long can I continue? I’m taking this time to reflect and consider as well as attempting to relax and remember myself.
When Brendan Bjorn turns 18 in 15 months (that is, if his journey is meant to go until then), he will lose the respite at the Children’s Hospice. He will also lose his Special Needs School. Currently, those are the only two places which give me some reprieve while he is in either setting.
What happens when he turns 18 and there is no place for him to go? What will happen to me?
These are not selfish questions. I’ve come far enough on this journey now to accept that these are necessary questions. Mind you, it’s taken me awhile to get to this realisation. If I don’t ask them, no one else will. And if I don’t take care of myself, no one will be there to take care of Brendan Bjorn. I can’t allow that to happen.
This point of fact is what the government and related disability sector services don’t seem to realise. Maybe they do realise it, but just don’t care. I’m afraid I think it’s the latter.
But I do care. I must be proactive and figure out what I can do – and indeed what I can no longer do – then see what can be done. I’m at a point in this journey where I would actually consider residential community living for Brendan Bjorn if such a place in Ireland existed. The government seems hellbent on closing them all down, which is a complete disservice to families such as mine. (Search the fight that St. Mary’s of the Angels has had to undertake to remain open)
If, God forbid, I died tomorrow, the government plan would be to put my son in a nursing home which is the worst solution possible. Who ever thought that would be a good idea? It terrifies me, which is one reason I’m now going to actively seek a sensible, compassionate, appropriate solution to the “what if” and “when I can no longer care” questions.
There has long been a saying amongst the special needs community of the world who have had to fight tooth and nail for the supports they and their severely disabled child require. I’ll end this blog piece with that quote. Some of you may understand. Some of you won’t and may find it shocking. Let me just say, none of us should ever have to say this – but we do. We do so because we know that so often, there is tragically no place for our special children to go if we can no longer care for them. Let that sink in.
“May I live at least one day longer than my child with special needs”