Dear Brendan Bjørn, today marks 18 months since you left us. I don’t know where the time has gone. Yet, as time is often so elusive, it seems like just yesterday I watched you struggle to take your final breath. 18 months. How can that be right?

Time has flown by while being at a standstill.

Your brother and I, as I believe in my heart you know, have had plans to make this house that I sit in typing at this very moment, a place of respite for other special children like yourself. A place to give exhausted parents, like I was, a bit of a break from time to time. Both of us want to honour you in this way – to have that be your legacy.

I hope it can still happen, my sweet boy, but I am losing that hope. I’ve waited for over a year for this to come to fruition…and didn’t put the house for sale on the open market as a result…yet here we are: At a standstill with no confirmation on what is happening to see this home become a benefit to others in such dire need of respite.

Time has flown by while being at a standstill but we can’t stand still any longer.

Next week, I’ll place the house for sale on the open market. I hope you understand that I tried. I will find another way for your legacy to bloom. It’s been over a year of talks and on-site reviews of our house but here we are, treading water and disappointingly getting nowhere. Your brother and I talk about what to do and we both agree that I have given the health service ample time to proceed. In fact, I am angry at myself for having trusted them in the first place that this would actually happen considering all of the fights for basic care for you while you were alive, including fighting for non-existent respite services in our region. The irony of that, right? I really should have known better. But…but…your brother and I both so desperately wanted this to be a respite home in your honour. He even suggested that your name be incorporated into the name of the respite home. I’m crying now thinking of it all – the loss, the missed opportunity, the failings.

So, we waited.
But we can’t wait any longer.

Continue to watch over us, please. Walk with us and guide our footsteps forward. Know that there are no words adequate to describe the depth of how much we miss you and love you, always. And my sweet angel, Brendan Bjørn, when it does come time for us to leave this home and make a new home elsewhere, follow us there. It will be the place that some day, hopefully far into the very distant future, I will be laid to rest with you in my arms. It will be our final home. It will be your brother’s future, too, surrounded by family to enrich his life as he grows to become a man. And may it bring you even more joy to see as you look upon us there.

But for today, it’s 18 months. How can it be?