When you think about it, 18 years is a long time to spend with someone. In this case, I’m talking about my first born son, Brendan Bjørn. I spent 18 Christmases with him.
This is the first one without him since 2003.
Our first Christmas together was in 2004. He was not quite 3 months old. It was the beginning of our journey. The diagnosis of congenital CMV (cytomegalovirus) and the resulting severe brain damage in utero was already given by this first Christmas together, but it was to become a journey which no one could foretell.
That first Christmas together was also my first Christmas as a mother. I always wanted to be a mom, and it was this amazing little baby I held in my arms who gave me that gift. Despite my heartbreak and the uncertain future ahead, or maybe because of the uncertainty of it all, I wanted that first Christmas to be perfect. I ordered a handmade stocking for him. I smile now as I remember that the stocking was twice the size of baby Brendan Bjørn. That same stocking is hanging from the fireplace directly in front of me as I type this blog piece. Of course now there is also the stocking for Declan which was added Christmas of 2008.
Declan. This is his first Christmas ever without his big brother. He had 14 Christmases with Brendan Bjørn. In my own grief, I cannot forget that fact. And I don’t forget that fact. We talk about him a lot. We miss him desperately, together. And tomorrow, on Christmas day, we will light a candle here at our house and speak to him from our hearts.
And he will hear us.
Of that I have no doubt.
As I think about our last Christmas together, 2021, I couldn’t have known that it was the last. Having said that, over the last number of years, it was never far from my mind that every special holiday could in fact be the last. This journey with a child who had a life-limiting condition was always one of uncertainty. Some days, some months, even some years, that uncertainty wasn’t thought of so much. But those latter years…God, those latter years…it was nearly an hourly reality which weighed heavy on the mind and heart.
I think this is, in part, why my soul is so tired now.
Those latter years of wondering every morning when I woke up, would I find him gone. Wondering would he have a seizure and die while at school and I wouldn’t be able to get to him in time to hold him in my arms while he left us. Would he linger on in pain or discomfort for months on end, or would he go quickly and quietly in his sleep.
If you haven’t been on this road, I cannot adequately explain to you just how taxing it is.
In the end, my beautiful boy’s departure from us was the one I had always dreaded: the one where his gastrointestinal system would no longer tolerate or absorb the special PEG feedings. I had seen it before in other children with cCMV and it was the one I feared the most. It was horrific to watch unfold over those last few months. Horrific. If I could forget anything, it’s the visualisation that keeps running through my mind of those last minutes.
Sorry, I know it’s Christmastime and this is not a very happy blog piece, but alas, it is what’s on my heart.
Brendan Bjørn loved Christmas. The music. The lights and sparkly garland. I always made sure to decorate his room, too. I can hear his laughter of joy. I can see his eyes beaming with love and light and that smile which lit up a room. Yes, these are the memories I want to keep playing over in my mind. I pray that those will be the memories I never forget.
When you think about it, 18 years is a long time to spend with someone.
I just wish I had another 18 years to spend with my beautiful son, Brendan Bjørn.