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.
Thinking of you as you face this first Christmas without your boy. This is my 7th without my Ben, which seems unbelievable. It has felt a little different this year, I have felt a little lighter in the build up than previous years – but not today, today feels heavy, sad, painful and wrong – the same feelings I know you will be having with such intensity in these early days. I’ve always said to people that I don’t miss Ben any more because it’s Christmas, I miss him the same every single day – I think people who don’t ‘get it’ think that times like Christmas and birthdays are harder days, when in reality the hardest day can be anyone ending with a Y! But what it does bring is an abundance of memories, and a never ending feeling of what should be – all the things we should be doing, with them here, as they should be – so it does bring lots of different thoughts, feelings and challenges. At this stage, all you’ve got to do is get through the day, an hour or so at a time, it really is just another day of missing your boy, and sadly there are plenty more of them to come – so be as gentle on yourself as you can, and this time tomorrow it’ll be pretty much over. I still now always feel a sense of relief when it’s done for another year. I hope you can find glimmers of light through the day with your other son. Sending you strength and best wishes. Helen x