My dearest son Brendan Bjorn,

I love you. With every shattered bit of my broken heart that remains, I love you. And I miss you. Oh, how I miss you!!! Your smile that lit up the room, your eyes which left no doubt they were saying just how much you loved me each time you gazed up at me or your brother, your laughter coming from down the hallway as you watched one of your favourite films. I miss it all.

The 10 days since you passed on have been as if time has stood still. Surreal. I can’t believe it’s been only 10 days, but then again, it seems only yesterday. Time has no logical flow right now. My head is spinning. My body is literally exhausted and aching. And my heart, well, what is left of it is screaming out for you to be here; for this to be a bad dream from which I can and will awake.

But I know it isn’t. God, how I know it isn’t.

Only 7 days ago today at this very time while I write this to you, your brother and I were at the funeral home preparing for the celebration of life we planned for you. I know you were there and you saw it all, for it was surely you who got me through those few days and the service. It was you who stood in spirit next to your brother as he found the words to thank you for your love and all you gave to us.

Thank you, for so many things, thank you.

I managed to go for a long walk today. You were on my mind the entire time. I saw you in the beauty of the wildflowers all along the roadside. I heard you in the birdsong. I felt you in the breeze. But still, the tears fell down my face as my longing to reach out and touch you unfairly can’t be met. The pain is indescribable. I think if it wasn’t for your brother, the pain would carry me away. It won’t, though, as he needs me now unlike ever before. My life now must be completely centred around him, as I know you would want it to be.

A friend who lost her disabled teenage son nearly 5 years ago said this to me:

“For us whose world literally revolves around our heroes, whose lives were literally intermingled, the “lost” feelings are almost unexplainable. We don’t know how to live any other way. Now the identity journey (similar to the one you probably had when his disabilities were discovered) literally spirals you.”

My sweet Brendan Bjorn, I am lost without you, spiralling, but I know I must not be lost. For Declan, I must not be.

What is lost within me is the identity my friend so accurately spoke of, and now I must somehow learn how to discover, once again, who I am as a person. After nearly 18 years, I am no longer a carer to a profoundly disabled son. I am no longer an advocate fighting for the rights of other carers as well as myself; no longer fighting for the rights of other disabled children as well as my own son. Just as when I became a full time carer to you, my precious, beautiful son, and I lost my long-worked for career, I now again have to find a new identity. I have to find myself in a world not devoted literally 24/7 around you.

This time, though, I have to attempt to find myself while also trying to not drown in the darkest depths of my grief. This time, though, I have lost you. And I have lost so very much of me. I have lost purpose and direction and, hell, I’ve even lost the income which kept our little family afloat. So much loss. So much loss.

Guide me, please, in the time ahead, my precious Brendan Bjorn.
Watch over me and your beloved little brother.

I love you, baby. With every shattered bit of my broken heart that remains, I love you.

Video celebrating the life of Brendan Bjorn, my beautiful angel son