Today marks 10 years since I wrote my first blog piece. At the time, Brendan Bjørn was in the hospital…yet again. He was going in for a procedure the next day, so I titled the piece, The Night Before. As I read it again now, I’m brought to tears. I can feel everything that I was feeling as I wrote it. The memories still so present. The pain, the struggles, and yes, also the joy at being blessed by being his mother. And I was truly blessed by him.
He’s been gone now for 3 years and 3 months.
I’m not the same person I was before.
I’m still not sure who I am now.
I’m not sure what my purpose is anymore.
Recently in our disabled community here in Ireland, another beautiful little boy, Harvey, left his parents and family all too soon. Like my son, he too had scoliosis and other health concerns and waited inhumanely, suffering, on the spinal fusion/operation waitlist. And like my son, this beautiful little boy garnered the attention of the media as his parents fought tirelessly for the timely, proper, healthcare their son needed. Also like my son, while their son did eventually get his operation, the damage done during such a horrifically long wait while his twisting spine did untold irreparable damage internally, it was heartbreakingly too little, too late.
Ireland is rallying around and calling for things to change for our children with additional healthcare needs. I hope and pray it will finally be the moment for that change!
Harvey’s passing and the flurry of attention to it on social media the past few weeks has triggered my anxiety and PTSD. I mention this only to highlight the toll this journey can take on a person, especially a lone-parent, nursing-level carer of nearly 18 years. The anguish of all those years of fighting, struggling to keep Brendan Bjørn alive, to receive all the healthcare and services he needed – and deserved – comes rushing back to me in waves that nearly drown me emotionally at times. Looking through all of the photos in attempts to help support this media storm call to facilitate needed changes has been extremely difficult for me. I’ve tried to publicly share on social media, once again, Brendan Bjørn’s own scoliosis journey and the grave injustices that occurred along the way.
It’s been another toll taken, though.
As I write this blog piece on the 10 year mark since my first blog piece, I contemplate what I need to do now for my own well-being. I think it’s time to earnestly, diligently, work on finishing the book I started about our journey. I think it’s time for me to honour Brendan Bjørn in that way. This blog will undoubtedly be a part of the book, but I’m thinking I will be less active in writing here now. At least, that’s the plan as I try to navigate life as it is now, with new struggles not written about here, but which are nonetheless equally challenging for me.
So, on this 10 year blog anniversary, I’ll end it with the final paragraph of that first blog. I dedicate this piece to all of our angels gone too soon.
“But I tuck the covers around him as I sit here on this hospital bed, looking at him while attempting to clear the “somethings” out of the air so I can see him more clearly. And there he is….the most beautiful angel fast asleep without a care in the world. Suddenly, for that moment, all is calm and all that remains is everything – unconditional love.“
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