I think I would be kidding myself if I expected this journey with my son Brendan Bjorn to be one of a clear, straight path. It’s not that I don’t see the joys, the positives, the love. Absolutely I do. Every. Single. Day. It’s in his eyes and his smile each time he looks at me. Such unconditional, pure, beautiful love that fills my very being and keeps me going.

Yet, this past week has challenged my strength to hold on to what is good. 

It has thrust me into a dark chasm within my own soul where light seldom finds a foothold. 

This week, I finally saw the x-ray taken a couple of weeks ago of his spine. There, right in front of me, was my fragile boy’s spine, twisting and turning like this journey we are on. Except these twists and turns are ones I can’t change with the ferociousness of being the Momma Bear that I am watching over my first born cub. These twists and turns are ones that now impact and increase his fragility as they pull one leg further out of socket and push the other leg further into socket where the bones are now clashing together.

And I wish I didn’t understand as much as I do.

I wish I didn’t understand how scoliosis can be so detrimental to other parts and functions in his body.

I wish I didn’t understand that if he was to get scoliosis surgery, his very fragile body might not survive said surgery.

I wish I didn’t understand that this is just one more twist, one more turn, on the palliative journey with my son who I cannot save but for whom I would instantly trade my life if it meant I could save his.

And my heart shatters.

This week did see some good news. We were approved for the housing list. The bad news is that the waiting list for housing in my county (Kildare) is 12 to 15 years. In 12 years, I will be 63, my other son, Declan, will be 20, and Brendan Bjorn will be an angel looking over us. Honestly, I can’t even think about 12 years from now. I am living day to day – sometimes hour to hour – on this journey full of twists and turns. The best I can hope for now is that I will find a suitable rental house where the landlord will take HAP (rental assistance) and the boys and I can have a safe, secure, warm home…at least for the 5 year HAP term. 5 years…in my world, that is a lifetime.

For Brendan Bjorn, and for Declan,
I have no choice but to navigate these twists and turns as best I can…
and so I will.
I promise them that,
no matter the darkness encountered.