One month on


Today marks one month since the boys and I moved into our forever home suitable for Brendan Bjorn’s complex care needs. I don’t think it has quite sunken in to my mind yet as I’m kept so busy still trying to unpack, clean, care, and simply be.

It’s been 4 months since Brendan Bjorn had his life-saving spinal fusion. However, he remains bedridden and unable to venture outside of his home because he is now on another waitlist, this time for a new custom moulded wheelchair seat suited for his new shape post surgery. His pressure sore has finally healed over as of a few days ago. Now it’s waiting for the seating that will enable him to experience the world outside of his bungalow. No child should have to wait for such a required healthcare item.

As I sit here taking a break between duties to write these thoughts, I considered my own history of moving from one house or town to another. By the time I was 5 years old, I had lived in 4 different houses in 3 different towns due to my dad’s job. By the time I was 10 years old, I had moved again, now a total of 5 different houses by that age. I don’t know if that’s an unusual amount of moving because that’s just my reality. It is just the way it happened. By the time Brendan Bjorn was 10, we had moved house 8 time…and that fact breaks my heart. Even so, today I take such comfort in knowing the moving stops here and now. This is it.

This will thankfully be the last home he will know.

This will also be the home where he will, some year, pass away and leave Declan and I surrounded by the most beautiful, loving memories of the boy we both so deeply love and admire. 

And as I look around at this moment, that realisation fills me with a peace that is indescribable and likely only silently, innately understood by other parents who are on this journey with their own precious child.

One month on and no more moving.
A place of new beginnings.
A place of endings.
A place for life and love.
What an amazing feeling of contentment having this home brings to me.

31 January


The grey area between being a parent and carer


This morning while I was giving my son, Brendan Bjorn, a bed bath and a shave, my mind once again wandered into the thoughts of being a full time carer. I trimmed his nose hairs oh so carefully. Yep, it needs done. He has thick, dark body hair and can’t blow his nose, so I need to keep his nasal passages as clear as possible. I also did some manscaping, as they call it. Yep again, it needs to be done. And again, he has thick, dark body hair and as a fully, doubly incontinent young man in nappies 24/7, it is the best way to keep that area clean when he passes what is always very loose stool.

Is that too much to write? 
Is that too much for you to read?

That’s just reality sans the sugar coating. It may not be your reality, but for so many of us who have become more than solely parents, it is our reality. I know men who care for their adult daughters during their menstrual cycle, just as I care for my young man with his more personal care needs. Make no mistake, this is reality.

In my advocacy work for disabled children (of all ages) and family carer rights, I’ve been told on more than one occasion that the work carers like me do is merely being a parent. Is it?

As I cleaned, trimmed, clipped, and cared for my beautiful, precious son this morning, I thought a lot about that statement. First off, no, I don’t agree with it. Having said that, when we decide to have a child, there is no guarantee that dream of the healthy baby being born will be the reality. It is always a gamble, a risk, that it won’t happen the way we hope, and I think anyone entering into parenthood should understand those risks and be ready to adapt, just in case life has other plans than the dreams of the pending parent.

BUT…being a full time carer is vastly different than being a parent to a typically healthy child. 

I think we need more discussions on how to treat parent carers.
There are questions to be asked; reforms to be made.

Should the parent of the child who needs full time care due to severe disabilities have to give up everything when crossing into that grey area from parent to carer? Surely there are other ways that the parent can continue contributing to society and their family with working full time, if that’s what they choose. Why can’t the parent carer be supported with home nursing or nursing in a daycare centre while they are out maintaining their career, their social life, their life as the person they once were before becoming *just a carer* who had to leave themselves behind so to care? Would the government (as some do in other countries) not see that it is to their benefit as well to support an active, contributing, member of society via nursing care during work hours? More jobs. More income. More taxes coming in. Less social welfare. It just might also result in carer parents who would have less struggles with depression and physical health issues related to being confined to home caring 24/7, which would in turn also save money from the public purse down the road.

As I float unseen in that grey area between being a parent and a carer, having left my former self behind, it all seems so achievable and logical to me. I wonder if it is?