They don’t tell you

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They don’t tell you…

They don’t tell you that just 2 weeks to the day, as today is, the pain is often more intense than the days immediately following.

They don’t tell you that you may be afraid to go into the room where your beloved died.

They don’t tell you that when you do finally brave going into the room to collect any medications to be returned to the pharmacy, seeing those medications which helped your beloved at the end of their life will send you into a complete emotional breakdown with uncontrollable sobbing.

They don’t tell you that as you pack the boxes and the bags full of unused, now unneeded, medications which kept your beloved healthy and alive as best they could, while tears stream down your face, will leave you with yet another layer of emptiness…as empty as the cupboards now stand.

They don’t tell you that spending nearly 18 years working, fighting, sacrificing all you are and doing all you could to keep your medically complex, profoundly disabled child alive, will mean absolutely nothing to the officials within your country as they throw you into the depths of financial despair while you’re drowning in the depths of complete emotional despair.

They don’t tell you that most bereavement literature is not geared toward your particular journey…that of being a parent to a profoundly disabled and/or medically complex child…and so the reading leaves you feeling just as misunderstood and unheard as the previous years of such a special journey had done.

They don’t tell you that the horrific images of the last days will come racing through your mind, invading the fleeting moments of rest, catapulting you into anxiety attacks as you work to rid the thoughts of the end from your weary mind.

They don’t tell you that after nearly 18 years of being a carer, you can’t even begin to comprehend how to be anything else again. Certainly not after just 2 weeks.

They don’t tell you how to now survive.

A love letter to my angel son

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My dearest son Brendan Bjorn,

I love you. With every shattered bit of my broken heart that remains, I love you. And I miss you. Oh, how I miss you!!! Your smile that lit up the room, your eyes which left no doubt they were saying just how much you loved me each time you gazed up at me or your brother, your laughter coming from down the hallway as you watched one of your favourite films. I miss it all.

The 10 days since you passed on have been as if time has stood still. Surreal. I can’t believe it’s been only 10 days, but then again, it seems only yesterday. Time has no logical flow right now. My head is spinning. My body is literally exhausted and aching. And my heart, well, what is left of it is screaming out for you to be here; for this to be a bad dream from which I can and will awake.

But I know it isn’t. God, how I know it isn’t.

Only 7 days ago today at this very time while I write this to you, your brother and I were at the funeral home preparing for the celebration of life we planned for you. I know you were there and you saw it all, for it was surely you who got me through those few days and the service. It was you who stood in spirit next to your brother as he found the words to thank you for your love and all you gave to us.

Thank you, for so many things, thank you.

I managed to go for a long walk today. You were on my mind the entire time. I saw you in the beauty of the wildflowers all along the roadside. I heard you in the birdsong. I felt you in the breeze. But still, the tears fell down my face as my longing to reach out and touch you unfairly can’t be met. The pain is indescribable. I think if it wasn’t for your brother, the pain would carry me away. It won’t, though, as he needs me now unlike ever before. My life now must be completely centred around him, as I know you would want it to be.

A friend who lost her disabled teenage son nearly 5 years ago said this to me:

“For us whose world literally revolves around our heroes, whose lives were literally intermingled, the “lost” feelings are almost unexplainable. We don’t know how to live any other way. Now the identity journey (similar to the one you probably had when his disabilities were discovered) literally spirals you.”

My sweet Brendan Bjorn, I am lost without you, spiralling, but I know I must not be lost. For Declan, I must not be.

What is lost within me is the identity my friend so accurately spoke of, and now I must somehow learn how to discover, once again, who I am as a person. After nearly 18 years, I am no longer a carer to a profoundly disabled son. I am no longer an advocate fighting for the rights of other carers as well as myself; no longer fighting for the rights of other disabled children as well as my own son. Just as when I became a full time carer to you, my precious, beautiful son, and I lost my long-worked for career, I now again have to find a new identity. I have to find myself in a world not devoted literally 24/7 around you.

This time, though, I have to attempt to find myself while also trying to not drown in the darkest depths of my grief. This time, though, I have lost you. And I have lost so very much of me. I have lost purpose and direction and, hell, I’ve even lost the income which kept our little family afloat. So much loss. So much loss.

Guide me, please, in the time ahead, my precious Brendan Bjorn.
Watch over me and your beloved little brother.

I love you, baby. With every shattered bit of my broken heart that remains, I love you.

Video celebrating the life of Brendan Bjorn, my beautiful angel son

I just want him back

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I’m sitting here alone watching the clock. It’s about to turn 7:44am. It will mark exactly one week since my beautiful first born son, Brendan Bjorn, took his last breath while his brother, Declan, and I held his hands.

7:41am

I don’t know if I can do this. Do anything. Right now, breathing is at times all I can find the energy to do. I haven’t even cried in a few days…not out of lack of emotion, but I think because the emotions are overwhelming me.

7:42am

This time last week the tears were streaming down my face as I stroked my boy’s lovely, thick brown hair and told him it was ok, that we were right here, that he could let go.

7:43am

Forget what I said above. After days of not crying, I am now crying as I type this blog piece. And remember.

7:44am

8:03am

Sobbed uncontrollably to the point of not being able to catch my breath and triggering my asthma. Inhaler taken now. Talking myself into a space of calming down because, well, I have to do it. I have to think of Declan. I’m all he has now and I can’t lose myself altogether. Yesterday was his 14th birthday. He needs me here. And God knows, I need him.

Declan is back at school today after having taken the last week and a half off. He’s been so mature through this heartbreak. He spoke so well at Brendan Bjorn’s celebration of life (funeral). We have moments of crying together, and even some moments of laughter. But this past week, it’s mostly been quiet. Solemn. Reflective. Still.

Life with Brendan Bjorn is ALL that Declan has ever known.
His world has been shaken as much as mine.
He is now my main priority in life: to get him settled for his life ahead as a young man in this world.

I’ve had a lot of time to think of what I would do when this day came where my caring role was over. Yet now that this day has come, I feel more lost than I thought I would. The day after Brendan Bjorn’s celebration of life, I could barely move. I was physically drained. I didn’t realise that I had gotten through the week and the service on what must have been reserves, because I woke the next morning with nothing left. I am still physically weak, exhausted, shaking.

Emotionally, I wrestle with thoughts of doubting myself…did I do enough; did I try everything; could I have done more…despite all of Brendan Bjorn’s doctors and nurses telling me I did all that I could and indeed more than many parents would do or have done. Still, I wrestle with those thoughts of questioning myself. Mind you, having someone call the police after my last blog piece, accusing me of starving my precious son to death, resulting in 3 Gardai coming into my home and questioning me, hasn’t helped my instinctual self-doubts. In fact, that evening continues to traumatise me, playing over in my mind and even invading my dreams. And to think Declan saw it all. My heart aches for all he’s been through.

8:16am

The tears have settled again, undoubtedly until next time they come raging. Today I will go to the GP and pick up the medical death certificate for Brendan Bjorn. The GP office rang yesterday to tell me it was ready while I was at the beach with Declan for his birthday. We tried to escape the reality, but it barged in on us with that phone call.

At some point this week, since I will now have the certificate, I will have to register his death and notify social welfare. That will be Declan and I floating adrift financially in now just 5 weeks time. How is someone supposed to pick themselves up after nearly 18 years of intensive, nursing-level, complex medical caring work, literally 24/7, and even contemplate rejoining the workforce? My body is broken after years of this work. My health not good. My career gone. My heart shattered. I’ll be 57 later this year and all I want to do now is rest. At this moment, I actually want to go back to bed but I know I can’t. Too much to get done. There is no one else to do it all.

8:23am

I just want him back.

for the last time

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Today I did the hardest thing I’ve ever done to date. I went to a funeral home to pre-plan Brendan Bjorn’s funeral. I thought doing that for my mother when I was just 24 was hard, but it pales in comparison to what I did today. My first born child. My precious, beautiful, beloved son.

For the last time, I had his devoted brother watch over Brendan Bjorn while I left him.

For the last time, I made plans about Brendan Bjorn’s future.

And I think my soul is being torn to bits.

Talk of arrangements…what to do, when to do it, how to do it.

Flowers and a casket.

Private or public repose, if any at all. Day before or same day.

Streaming the service, or not, for those unable to attend.

My head spins.
My stomach with an awful pain the past two days.
My hands trembling for the past few weeks.

Costs. I ask about costs.

For the last time, I ask about how much something will cost for Brendan Bjorn.

For the last time, I reluctantly resort to asking for help to cover those costs.

For the last time, the humiliation at doing so rises within me as I do just that, one last time, for my Brendan Bjorn.

Via GoFundMe at: https://www.gofundme.com/f/funeral-costs-for-brendan-bjorn

Or via PayPal at: https://www.paypal.com/paypalme/4BrendanBjorn

And I now know my soul is being torn to bits.

What will I do when I can no longer hold his hand?