Today is four months since my son, Brendan Bjørn, took his last breath with his brother and me by his side. Four months today since everything I had centred my life around for nearly 18 years left me in a tailspin filled with grief, pain, and uncertainty.
I have gone into Brendan Bjørn’s room only a handful of times in the past 4 months, although I walk by it daily. I’ll glance in as I walk by. The bed gone. The wheelchair gone. The dresser still there with his television on top just begging to play Finding Nemo one more time. Instead, there is only silence coming from his room.
No more laughter.
No more whirling drone of the feeding pump.
No more beeps from the various alarms.
There is only silence surrounding everything that was left as it was that day 4 months ago.
His clothes remain stacked up on a table. They are all dusty now. They’ll clearly need a wash before I donate them. I can’t do that yet.
His bedside locker still there, covered in the daily medical care items which are now destined for the bin, yet I can’t bring myself to complete that task, either.
Instead, I hold on to this unrealistic status quo as if I can make time stand still. But of course, I can’t. Time keeps moving along whether I move with it or not. I suppose that’s why I don’t go into his room and only give a quick glance as I pass it: If I stay or look too long at it, the emptiness will engulf me, reminding me that he is gone; reminding me that what I built my life around for nearly two decades no longer exists.
Parents like me who are (or have been, in my case) long term carers to their disabled child not only are left to grieve when their precious child (or adult child) dies, but they are left without a career to return to after so many years working full-time, around the clock, (unpaid, mind you) at keeping their child alive. They are often suddenly left with no income stream at all. They are suddenly reminded that they are aging and have health issues from the toll caring work took on their own bodies. They are also suddenly cognisant of the fact that there was no pension accruing for that elusive thing called retirement.
All of these lead to feelings of desperate fear and uncertainty about the future, while trying to simultaneously navigate the road of grief. There are no street signs telling you which way to go or what speed to even attempt.
It’s like an unlit tunnel in which you hope you’ll soon see a light to guide you forward.
Yesterday, I got a memorial tattoo done in his honour. I think he would have loved looking at it. He so enjoyed seeing everything in his surroundings! I can imagine his big, happy smile. I’m looking down at the tattoo now as I type. People have long said I wear my heart on my sleeve, and so now, I truly do. I always will. For you, my beautiful angel Brendan Bjørn. As always, for you.