Reflections on the loss of a sibling, by Emily

On the 8th January this year I said goodbye to my youngest brother Joe, just 3 weeks after giving birth to my daughter. Joe was an incredible gentleman and the true definition of a warrior.

He was so much more to me than just my brother. Not to diminish the fact that he was an amazing little brother, but he was also my friend, adventure companion, confidant, sounding board, voice of reason and so much more. There are just no words of sufficient impact or meaning, nor will there ever be, to attempt to accurately describe to someone who didn’t know him just how important and amazing he really was.

Joe lived with a life-limiting condition called Duchenne Muscular Dystrophy. It is a rare degenerative muscle wasting disease that takes those who live with it far too soon. Joe was 27 when he passed away, yet believe it or not this is considered ‘old’ for those living with DMD. 

While I knew from a young age that a time would come in my life where Joe would no longer be with us, losing him still came as a shock. Although Joe lived with this cruel disease, we were so lucky that he had never actually been acutely unwell until a few months before he passed away. That is absolute testament to the exceptional standard of care that my mum and dad provided him with 24/7, for 27 years.

Visiting Joe in hospital 2 weeks after having my daughter, I would feed her in the hospital atrium before handing her off to family so that I could go and be with Joe. Time that I am so grateful that I had. I was able to just be there for him just as he was for everyone else, and that was so important to me. I could see just how poorly he was, and I knew logically that this was too great a fight for him from my years of working in healthcare. Yet, I just would not accept it.

“I could never ever have been prepared for life in a world where he no longer exists”

I held on so tightly to that 2% chance that he would pull through, because if anyone could do it he could. That was until 2:36am on the 8th January, when my dad called me to tell me that Joe had sadly passed away. I had been up just 36 mins earlier feeding my newborn daughter. The exact time that he closed his eyes for the last time.

I spent well over 20 years preparing myself, going through this prolonged grieving process while Joe was still here, all in preparation for this time. Well, let me tell you. There is nothing in the world that could have ever prepared me for this. Nothing. No amount of researching, hoping and praying that this day would never really come.

I spent so many years trying to arm myself with as much medical and practical knowledge that I could, so that I would be able to be ‘strong’ and ‘helpful’ when this time came and in all the steps along the way. In my mind that somehow translated that then I would be ok, so I could help everyone else. Hoping that in some way this would all be so much less painful because I would be ‘prepared’. But I could never ever have been prepared for life in a world where he no longer exists. 

I think living with this knowledge for so long, only made me believe even more unwaveringly that he would never really leave us. I truly thought he would go on forever, because he was too special and important to not be right here with us. I know that isn’t logical. But that is the biggest lesson I have learnt over the last five months. Grief is not logical. It doesn’t make sense, it isn’t fair, and it certainly isn’t something that you can ever prepare yourself for.

I have so many special memories with Joe, from years of trips and adventures together that I am eternally grateful I had the chance to make with him. My brain still won’t accept that I will never physically see him again, and I honestly don’t know that it ever will. So the memories are what I replay in my mind every single day. From the second I wake up, until I go to sleep every night.

That ultimately is what is left of us when we’re gone, isn’t it? The memories we leave with those who love us the most, and the legacy of the lives we’ve touched and enriched along the way. Joe enriched so many people’s lives through his advocacy for other people living with DMD, following his dreams and never being a victim to his condition. He truly, wildly and passionately lived by our family motto; “No regrets”. So, that is what I will do for the rest of my life, in his memory.

Emily Bewley

Find Emily talking about grief on Instagram – @scribblesofsanity