Fighting the battles to avoid losing the war


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.


june 23

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