Tonight as I gave Brendan Bjorn his evening dose of no less than 7 different medications, I was chatting away to him as I typically do. “Christmas is only a bit over 3 months away, Brenny!” I said with anticipation of my favourite time of year. And, as he typically does when I chat to him, he smiled broadly while staring into my eyes, soaking it all in. I started thinking then – Christmas…already? One thought led to another and before you know it I realised I had nearly forgotten something no mother should ever forget:

It’s only 25 days until Brendan Bjorn turns 13!

Once I got past the dismay in myself forgetting this tremendously important milestone for my first born child, I began instead to think about what the day, October 1st, will mean. Well, for me, it will mean nothing short of a miracle.

If you had asked me this time last year, I would have said chances are Brendan wouldn’t see 13. His health was in that serious of a decline. But here we are, thankfully now able to count down in days to the special birthday when he will become a TEENAGER! This amazingly gentle, fragile child who has shown his indomitable spirit time and time again, is going to be a teenager. I am truly overcome with emotion as I sit here writing this in the quiet of the night.

When you are on this journey with a child who has such a precarious life-limiting condition, each day you have is one that you couldn’t count on having.

25 more days.

It is also 25 days until my little family find ourselves living somewhere other than where we currently are, although where we will be is completely unknown. We face homelessness and may very well end up having no choice but going to live in a hotel. Now there is a sentence I never thought I would write about myself. 

As I finished giving Brendan Bjorn his medications earlier tonight, my thoughts went from his birthday to where will we be for his birthday? Will he be safe? Will we be in a home? Or will we be in a hotel, him in a flat hotel bed without a specialised pressure relieving mattress, his health…his life…then put in serious jeopardy? My heart sank.

My joy at his milestone birthday disappeared as quickly as it came.

25 more days.

This journey with Brendan Bjorn has taught me that one day can completely change a person’s entire life. This journey has also taught me that you can never be sure what is going to happen from one day to the next.

So, with this journey’s learnings, I can only hope that these next 25 days will change our 3 lives for the better, not for the worse.

I can only hope that come Brendan’s milestone 13th birthday, we are safe, secure, and happily together in what will be our long-term family home.

Only 25 more days until October 1st.