Today I turn 58. It’s the second birthday for me since my beloved son, Brendan Bjørn, passed on.

The first of my birthdays that I celebrated with him was my 39th. It was a day of mixed emotion. I had finally become a mother two months earlier, after four losses over 20 years. Yet, I had learned the month after his birth that he had significant brain damage and his future challenges were a long list of possible outcomes, most of them absolutely terrifying to me. As his 17 and 1/2 year long journey unfolded, many of those potential challenges transformed into realities.

I wonder, as I sit here in a quiet house sadly devoid of his laughter, typing this and contemplating turning 58, what should I do with my remaining time in this life? And if I’m to be completely honest, lately I’ve wondered just how many more years do I have left? I know, I know, it’s a question that we all might ponder as we approach certain milestone ages like 60.

I also know I can’t have the answer to that ominous question, and I actually may not want to know the answer even if I could. What is left, then, is the realisation that with however long I do have left on this journey, I need to make the most of it, not just for myself but also – and actually, primarily so – for my youngest son, Declan. I lost my own mother shortly after my 24th birthday. She was only 60 years old. I do not want my son to experience that, too.

So, it is time to earnestly commit to becoming as healthy as I can be (physically, emotionally and spiritually) and to forge a new path for me and Declan to walk along. In the next couple of months, we will be starting a new chapter in our life’s book; a book which, so far, has been adventure-filled and monotonous, joyous and heartbreaking, glorious and tragic…and everything in between.

I trust that Brendan Bjørn will be on this new path with us, watching over us, and guiding us as we step forward. I can feel the radiant warmth of his love as he smiles at me from the place that he is now. It sustains me in many ways. He gave me the most incredible of gifts in his short life: Becoming a mother and Teaching me about genuine unconditional love.

For this birthday, I carry those gifts from him with me. I always will do, in fact, for they are priceless, timeless and the most precious of gifts imaginable. I carry those gifts with me for my other son, as well, and will convey them on to him in hopes that he, too, will carry them throughout his own life.

The circle of life goes on and the path continues.
The page is turned and the new journey lies ahead, just waiting to be explored.

Here’s to 58 years.

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?

My dearest Brendan Bjørn,

Today is your 19th birthday. It’s the second birthday Declan and I will solemnly celebrate for you, but heartbreakingly without you. I wonder if you will be watching. I wonder what it’s like where you are.

There is so much I still wonder…

I still wonder if I did all I should have done, could have done. I wonder if I did what was best or if I could have done better. Those last weeks and days still haunt the deepest parts of my being. Still.

I wonder if you are at peace with your parting from this life. I hope, I pray, that all you experience now is complete and totally blissful peace and joy, because that, my beautiful son, is what you shared with me for 17 years.

502 days since we watched you struggle to take your last breath. A day I wish I could stop reliving in my mind.

502 days since my world was turned upside down, leaving me spinning and without direction.

My beloved, precious son, may I always remember that moment 19 years ago today when the doctor said from the other side of the blue sheet draped at across my chest during the C-section, “You have a boy!” My heart leapt and from that moment on was filled with the greatest of possible loves, that of a mother for her child! That love for you remains, Brendan Bjørn, and it always will.

On the bookshelf in the room with me here is a photo of you with your beaming smile. It, like you, lights up the room. It was taken on your 17th birthday…your last birthday with us. That is, your last birthday with us in person. I hold on to the belief that you are still with us in spirit, watching over us as we try each day to move ahead with you forever in our hearts. I hope we have your guidance and blessing with each decision made as we take those steps forward.

Thank you for the gift that was you for those 17 years, 7 months, and 17 days. From the day you were born, I wanted to give you the world. As it turned out, you gave me, and your brother, love that was not of this world. Thank you.

Happy heavenly birthday, my angel boy. I love you forever and ever and a day.

“I hope you’re dancing in the sky
And I hope you’re singing in the angel’s choir
And I hope the angels know what they have“

“The prime meridian is the line of 0° longitude, the starting point for measuring distance
both east and west around Earth.”

I’m standing on that precipice of decision.
This is the moment of my own Prime Meridian.

This ‘moment’ has indeed been months-long rather than a fleeting moment. I think life changing decisions require contemplation, even when desperately trying to maintain balance on that precipice. In truth, my moment has extended in time because it’s not just my own Prime Meridian that will change, but that of Declan’s, too. So, careful contemplation and logical thinking delays the step off that precipice into the new starting point.

So much has changed in my heart since losing Brendan Bjørn 14 months ago. Some things I was certain of a few years ago no longer hold true. Some plans I had are no longer wanted. Some feelings I thought unshakeable are no longer present. And, some feelings are now present which weren’t present even just two years ago.

My Prime Meridian has changed with the loss of my precious son Brendan Bjørn.

Late last year, I had seriously considered moving Declan and I out to the west of Ireland to County Kerry so we could get a fresh start but a few situations changed my mind: Declan being put on 2 different – likely endless – waitlists for medical evaluation and, get this, renewed hate/bullying on social media after I had mentioned I was looking to sell the house, calling me all sorts of slanderous, hurtful names with (how can I put this?) very misguided accusations. I suppose I should thank that clique of gossiping women for bringing clarity to my decision.

Declan deserves better.
I deserve better.

A few weeks ago, Declan and I went to Arizona and I took him to my hometown for the first time. While it may not have totally been his cup of tea, it stirred in me feelings that I haven’t felt for years. Feelings of belonging. An easiness, a comfort, and an acceptance in simply being who I am. And so importantly, connection…that longed for connection which every human being desires on some level.

Yesterday, I got a big nudge off of the precipice of decision when I took Declan to a disaster of a private consultation appointment which has left me with no doubt that it’s time to reset our Prime Meridian.

I’ll be 58 by the end of this year. I would like to think I have a lot of life ahead of me, but as a fellow foreign-born friend of mine said to me last week, she feels like she’s just waiting to die here, biding her time with no motivation, no connections, not living life to its fullest or reaching her potential. She mentioned how no one invites her over for anything, dinner or Christmas or otherwise. I experience and feel the same, even after losing Brendan Bjørn, and I’ll be damned if I’m going to continue this isolated, depressive, frustrating life fighting for basic care and merely existing.

I want to fully live, connected, with intent and potentials reached.
I want the same for Declan.

Yes, now is the time to reset our Prime Meridian.

My dearest son Brendan Bjørn, how has it been a year since I saw you leave me? Time has been at a standstill since you took your last breath. I have been frozen, lost in the emotional chaos of grief. One year. How can it be?

I still hope it’s just a nightmare from which I will wake relieved though traumatised. But I know it isn’t just a nightmare.

I know this is life’s cruel reality one year on.

I went into your bedroom yesterday, memories hidden behind the closed door. There were cobwebs in the corner. Dust on the dresser. I felt shame and guilt that I’ve let it go like this for so long. If you saw, you’ll know that I’ve cleaned it now, although there is still much more to do.

I think it’s time for me to begin the thaw; to begin sorting through your things to pass them on to others in need. I plan to bring your talking Mother Goose to your school. I imagine your former fellow students will enjoy it as much as you did. I’ll bring other toys of yours to share, too. I hope that makes you happy, my beautiful angel.

Your oxygen tanks are still here, never having been collected. I must call about those again. There is so much I need to get sorted, so much I need to decide, so much to do. But not today. No, not today.

Today I will try to forget you in those last horrifying moments which continue to terrorise my mind.

Today I will try to remember only your laughter and the beaming smile that accompanied it for nearly 18 years.

Today I will try to feel again that sense of wholeness when I first held you in my arms all those years ago as you scowled at the bright operating room lights and I told you not to worry because I had you…I had you.

Today I will try to think on only the good moments – which were immeasurable – filled with such a magical unconditional love and pureness of soul.

I hope you know that you meant everything to me and how blessed and thankful I am to have been your mother.

I hope I never failed you.

I hope you only ever felt completely and beautifully loved, for you were the very best of this world.

Your brother misses you, too, but I have no doubts you know that, for the special bond the two of you shared was a sight to behold. How privileged I was to witness that love! I hope you’re smiling when we talk of you and that it brings you joy to watch over us as we cherish our memories of you. I have to think that you are.

I have to believe.

Today I will try to be a little better than I was the day before. I will try the same again tomorrow and then the day after. I will keep trying, for you, my beloved Brendan Bjørn, and for your amazing younger brother.

Today I will try, but I know I will fail for the most part because I am so utterly broken…still…one year on. I am numb yet I am in agony. I am lost yet I am all too aware of where I am at as I sit here typing this and realise a year ago this time you had less than an hour to live. 7:44am draws near.

You see how I’ve already failed at forgetting those last horrifying moments?

I must try to give myself the grace to just be in the day that it is because I know that is what you would want for me.

These words are so vastly insufficient, but I miss you, angel boy. Every moment of every day with every fiber of my being, I miss you. Thank you for all that you gave to me and all that you taught me. Thank you for being my son. I was truly, truly blessed to be your mother.

I love you, baby, forever and ever and ever,

Mommy

Last week, my son Declan and I went on a short trip to County Kerry. As Kerry is, it was beautiful. But something happened which has now driven home to me that my life is forever changed and what I once found peace and solace in, I won’t be able to any longer.

I feel like a vital part of me has been stolen away and it’s left me emotionally devastated.

I grew up in the mountains of northern Arizona and spent most of my life living, camping, fishing, hiking and driving through the Rockies of the American West. It is inextricably linked to who I am as a person. It is in the mountains that I’ve always found the most peace and, if I’m to be honest, felt the closest to God.

Last week while in Kerry, I discovered that whatever is going on with my brain’s ability to perceive my surroundings, it is truly going to inhibit my abilities from this point forward in my life.

I first noticed this extreme sense of vertigo (which I’ve never had before) last summer while in Norway when driving over bridges or along mountsides. I wrote it off to being exhausted, having only lost my precious Brendan Bjørn weeks earlier.

It turns out that isn’t the case.

Declan and I took two drives: One out the Dingle Peninsula from Tralee to Dunquin Pier (not going over Conor’s Pass, FYI) and the other from Tralee to Cahersiveen. I was TERRIFIED. I froze. I had panic attacks. My head swam as the roadway dropped down sharply to the sea or the mountain road dropped sharply to the valley floor. If you’ve ever watched a video of a more extreme rollercoaster ride from the first person perspective and felt your head and stomach have an out of body experience, that’s it. That’s what I felt…except I was the one behind the wheel.

Nearly 40 years of driving in the mountains and through the canyonlands and now it’s done. I feel like someone has just stolen my ability to access the part of me which I have desperately hoped to recapture after so many years of being isolated and homebound as a carer. Correction. That ability has been stolen, somehow.

I had an MRI of my brain done a couple months ago to try and find a cause for these vertigo issues – or is it a sensory perception issue??? – and ironically I got a phone call while in Kerry with the results. “All clear.” It would seem my brain is normal. (I’m sure there are a few jokes to be had about that, but do resist)

I was chatting to a friend who also has long covid and apparently this is one of the possible outcomes. If it is long covid related, it’s from when I had covid in March 2020. Do the symptoms of long covid not go away after 3 years? I don’t know but I’ll have to find out.

In the meantime, I need to re-examine my plans and hopes for the future. I’ll need to work around, or with, this health related situation which has left me heartbroken on top of the heartbreak I already feel.

Somehow.
But I don’t know how.
And I’m lost yet again.