2022 was the worst year of my life. There really is no other way to put it. If a person can hate a year, then I will say I hate 2022. I know, I know, hating a year doesn’t get me anywhere. However, releasing that indescribable pain and anger, even somewhat, helps me to heal so I can take a few more steps forward into 2023.

2022

• At the beginning of the year, I was diagnosed with adult-onset asthma, high cholesterol and fibromyalgia with chronic neuropathic pain. I’m now on medication for each of those conditions. Did I mention I’m also on a CPAP at night for sleep apnea? (a deep sigh and an eye roll being done here)

• In May, as those of you who follow this blog know, I lost my beloved, precious, first born son, Brendan Bjørn. There is no greater loss than that of a child. Half of my heart will forever be missing.

• In July, I got covid, probably for the second time. Long covid has now been discussed.

• And currently, I embarrassingly weigh more than I’ve ever been before and I’m disgusted with that weight. My other health conditions don’t help with my weight, and my weight doesn’t help those conditions. It is a truly vicious circle.

So here we are today. There is one day left in 2022 and I, for one, will not be sad to see the door close on this year. I must now look ahead to 2023. Things have to change and indeed, improve. My health is a primary focus. Declan’s future is another.

This all leaves me with much to ponder as the New Year quickly approaches.

2023

In my head, I wrestle with the realistic understanding that life is short and this is our one and only shot at it. As the saying goes, life is not a dress rehearsal. So I wonder: Where do my dreams fit in with the remaining time I have? What dreams do I, or must I, sacrifice and which ones can I actually see to fruition? I’ve lived enough of life to know that I cannot have it all, as some unrealistic folks might like to suggest.

I’m entering 2023 with far more questions than answers.
I won’t be setting any New Year’s resolutions.

I’m just going to try my best to put one foot in front of the other (figuratively and literally) while I learn how to navigate and live life without Brendan Bjørn and with these new health concerns of my own. I will hold my younger son’s hand (again, figuratively and literally) as we step into this new year, this new life, for us both.

I will do it all with such deep gratitude and love for my son Declan and with the blessed memories and unending love that I have for my angel Brendan Bjørn.

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.

I turn 57 today. It has been the most difficult year of my life thus far. In 4 days, it will be 7 months since I lost by first born son, my beautiful Brendan Bjørn. In 12 days it will be my first Christmas without him since 2004.

Yes, it has been, and continues to be, one hell of a difficult year.

December 13th is St. Lucia Day in Scandinavia, celebrating St. Lucy. The ceremony begins with a girl dressed in a white gown with a wreath of candles on her head to symbolise bringing light into a time of darkness. In more ancient Norse times, it was a celebration of the winter solstice complete with big bonfires to bring the light and scare off evil spirits. As with many beliefs over the passing of time, the old ideas merged with the new, and here we are celebrating the bringing of light into dark times on my birthday. I’ve always found that pretty special.

So, for the day that it is, in all of the above ways, I am trying to shine some light on the darkness in my life.

The darkness: I’m 57, I have a number of health issues which keep me from being as physically-able as I have normally been and desperately want to be once more. I just hope I can be. I am trying to manage those conditions as best I can, with medications, but they still leave me not all I want to be. Or should I say, not all that I NEED to be.

Caring for my son for so many years without the proper supports has taken its toll on my body and my health. Let’s make no mistake about that fact.

I need to reinvent myself now that the caring job is over.

I’m barely scraping by financially. I need to earn an income again, so many years after leaving my professional career to become a full time carer to Brendan Bjørn. How do I do that when I’ve been ‘unemployed’ for so long? When I have such health issues? When I’m so tired and who I am has changed so much? When I’m 57 and looking to compete in a market with much younger, up to date and relevant candidates? When I’m still so lost as what to do and where to do it?

How do I reinvent myself now?

This reinventing myself isn’t just about me, contrary to how it sounds. If it was just about me, I’d likely ride off into the sunset and live a quiet, albeit poor, life somewhere remote until my days were done. I’d happily live in a log cabin in the mountains and watch nature go by, sunrise to sunset, while I write my memoirs and other musings. And part of me does want that for myself – to be surrounded by peaceful, beautiful nature with mountains, forests and lakes which bring peace to my soul.

But no, this is, to the greatest extent, about my younger son, Declan. He needs me to be all I can be for him now. I need to provide the life, the home, the stable foundation that he so rightly deserves. This is where reinventing myself comes into play. This next chapter…or new book altogether…is for him. And so, I hope my health can be what it needs to be in order for me to reinvent myself. I’m scared it won’t or can’t be. It must be, though, I keep telling myself. It simply must be.

I just wish St. Lucia would shine the light a bit brighter so I could see what to do.