There comes a time when I don’t know how to articulate all that is filling my mind. I sit here alternating my stare between the computer screen and the wall and my words simply fail me. It’s times like these when I know a thought or emotion, or probably both to be honest, is too much for me to carry. It all needs to be lightened, enlightened, and illuminated.

You see, I found something out today that has left me still sitting here in shock, at least I think that’s what it is.

My son has lost 5 pounds in 18 days. My fragile, palliative, beautiful son.

And I am gutted. I am afraid of what this weight loss will do, what it means, and what it could lead to.

Brendan Bjorn spent the majority of the past 2 weeks in hospital. Once again, as it did in August 2015, his body has grown even more unaccepting of the formula which sustains him.

It was only today that he could handle his full-strength feed at the pump rate and amount that he was at 2 weeks ago.

It was only today that I gently carried him in my arms as I stepped onto the bathroom scale to see with my eyes the number my heart had already guessed.

It was only today that I weighed my 9 year old son, Declan – who is 3 1/2 years younger than Brendan Bjorn – and discovered he now weighs 21 pounds (9.5 kilos) more than his big brother Brendan Bjorn.

And I am gutted. I am afraid. 

My sweet angel has been on total bedrest since coming home from the hospital a few days ago. The grade 2 pressure sore must be healed before he can again sit upright on his bottom, which is where the sore is located. It is healing, but slowly. The loss of weight and the lack of nutrition isn’t helping anything, and in fact, it is hurting.

I feel like I am juggling 100 balls in the air all at once and a gust of wind comes whipping through and I can’t do anything to catch the balls or stop the wind no matter how desperately I try. I scramble to pick up the balls from the ground while I turn my back to block the wind from blowing more of them astray. I was doing alright while they were all in flight circulating in rhythm thanks to my long-practiced juggling skills. But all it takes is one unexpected gust and disaster looms.

There is positive to focus on, I do know this, although lately I seem to not write so much about the good parts of this journey. I feel badly about being remiss in this way. So, that being said, the positive:

The past couple of weeks I have seen an outpouring of caring from my community – friends (old and new); networks of strangers-turned-friends who are all like minded people caring about our lovely little island; and the fellow mothers in my local townland. All of these people have come in one form or another to show support, lend a hand, and lift me up. Some gestures small, some gestures large, but all equally appreciated and heartfelt. It is this sense of caring and community that I fell in love with 22 years ago when I first came to live in Ireland. I hope it will always continue in our community, for it is truly what is best about us. And as I raise my son Declan to carry on this thread of caring that interlinks us all within our community, I can see that there is a good chance it will indeed continue on.

Another night and all is quiet for the moment. I seem to have found my words, along with a bit of light, enlightenment and illumination. The pain remains. The fear remains. No one ever said this journey with my son was going to be easy, but oh how thankful I am for all it has given me.