Buried my son on xmas eve

[Moon]

Hello fellow community in mourning, I’m reaching out to other parents who have experienced the loss of a child, in the hope of shared support.
The waiting list for counselling is so long, I’m drowning in sorrow meantime.
I may not be able to offer much just yet as I’m deeply depressed but can promise to listen and empathise with each and all of your stories.

To introduce myself, I am a mother of 4 (now 3) adult children. Recent empty-nester, was already struggling with the loneliness that entails.
My nickname is Jezza, as that is how my friends’ called my 19yr old son Jeremy, who died on the 20th Dec just passed.

Yes his death was unexpected, but we have all lived the last 9 years with baited breath as he experienced so many struggles in his short life, almost half of which was spent in and out of Westmead Childrens, more recently St Vincents’ Hospital. I’ll share a recap:

My son was diagnosed with leukaemia when he was 10 yrs old. Had 18 months of intense chemo, total body irradiation, but sadly relapsed so needed a bone marrow transplant, which his twin sister was a good match for. Developped gvhd (rejection) of the lungs, needed to go on the transplant list. Gratefully had a double lung transplant last January, his health improved amazingly. Got back into skating, got a job, even his first girlfriend ! He was feeling so good, got sick of taking 30 meds per day, missed a couple for a day or two, thought he could catch up, but the rejection process of his new lungs was unstoppable and he died within 3 weeks. This was not meant to happen !!

I’m really struggling with all the emotions that come with grief, coupled with longstanding depression being bipolar. One of the hardest is ‘mummy guilt’, wishing I could have prevented this. Insert swear words, covid meant less check-ups, hospital support and prevented me from visiting him and his twin sister. I could only hand home-cooked meals (as mums do) over the balcony. If, the forever, if ?!, he’d been living at home with me still, I could have supervised his medication maybe, but he was always so very diligent in taking them, no-one suspected he’d ever skip a few…?

I want to support my daughter (just quietly – wished she moved back home) but she needs her space. She just moved from their shared apartment to a share house. She dropped off Jeremy’s clothes recently. Buried my head in them on their birthday last week. I sob all day long, it’s exhausting.

From all my years in hospital, I find the best comfort with others who have similar experiences, so here’s hoping my story connects with someone. Thank you for listening XX

Topic

[Moon]

Hi Deb, everyone reading, I find comfort knowing I can share my ramblings here with others who understand. I need a safe place to express and writing (music obviously) is my outlet. My mind is too often like a broken record, replaying scenes and conversations and the forever torment of ‘ if only’.
As you say Deb, the world keeps spinning, but for us and our children, time stands still. I found a poem I wrote when my mother passed away, little did I know at the age of 12 how these words would come back to haunt me again. I’ll share the first paragraph:
“For me, time does not progress
It revolves around the centre of pain
Of which my life is a prisoner
For me, there is only one season
The season of sorrow
A time of ceaseless tears”
So yes everyday is pretty much the same, some worse than others. I still lie awake in the early hours staring blankly in the darkness going over everything. Cry upon waking, kiss his photos, get my coffee and sit outside and chat to my son. No one can hear me, cat already knows I’m crazy. I make my usual list of “things I need to do” , ignore it until my inertia drives me crazy, manage one or maybe two things before the afternoon slump hits. There’s really nothing that’s going to change for tomorrow to be any different.
I feel like I’m just treading water, with no life buoy in sight. Not even a ship on the far horizon worth the effort to swim towards.
For 10 years I’ve had my breath held, waiting for the next, and the next test results, next appointment, now there’s nothing to wait for, do you know what I mean ?
I don’t know who I am if not a mother caring for her sick child. I don’t have any other identity and no longer feel part of this world. It’s so lonely.
That’s why I need to write here, to feel some connection with others, so thank you for listening. I hope my words don’t bring anyone down.
Actually, I might share a poem one of my sons’ friends read at his service to make you smile how much joy he brought to others xx

[Moon]

(Please respect privacy and confidentiality thanks)

Thank you, Jeremy.

Connection, honest and deep, is only possible through vulnerable authenticity. And Jeremy showed up, in every moment, as beautifully real. You felt it, through the warmth of his smile, the sincerity of his chuckles. If eyes are the window to soul, Jeremy was pressed up against his.
Some people might be chilling on the carpet,, doing a puzzle maybe, further from the glass. But Jeremy was right there. Every time I held his face and looked into his eyes, his spirit burst through them, like a kid after school clambering out their bedroom window because they just can’t wait to climb that one tree. Just looking into his eyes you could sense that he existed with such bravery, with wonder and with warmth. That type of presence is rare and to know Jeremy will forever remain a gift.
In recounting the years that I have been lucky enough to be friends with Jeremy, I started to spiral because the edges of my memories had been frayed by time. But we only lose the unimportant details. The love and joy of Jeremy is not the colour of his shirt, the punchline of a joke or the weather on a Wednesday.
I think people plant seeds of love in one another, through every smile and act of compassion. And we water them by realising that that love is now with in us.
Thank you Jeremy for the way you squeezed my hand back when I squeezed yours.
Thank you Jeremy for sharing your agriculture notes.
Thank you Jeremy for being such a gentle skate teacher.
Thank you Jeremy for understanding I don’t take criticism well.
Thank you Jeremy for the warmth you hug with.
Thank you Jeremy for the secrets you whispered in my ear.
Thank you Jeremy for the honour of trusting me.
Thank you Jeremy for loving me with out judgement.
Thank you Jeremy for all of your song recommendations. Each and everyone one was a proper banger.
Thank you Jeremy for laughing at my jokes even when they weren’t funny
Thank you Jeremy for making jokes that were actually funny.
Thank you Jeremy for listening to my rambling rants.
Thank you Jeremy for being a gracious pool winner.
Thank you Jeremy for dancing with me under street lights.
Thank you Jeremy for telling me your dreams in vivid detail.
Thank you Jeremy for never making me feel like I was too much.
Thank you Jeremy for planting a football field of flowers on my chest that I can smell and know you all over again.

[Moon]

Hello anyone reading. Today has been a day of emotions I wasn’t prepared for and am feeling especially teary now.
I visited my sons’church, where his service was held for the first time since his funeral.
I’m not a church-goer but my son had a huge community supporting him which I am grateful for. One elderly lady in particular used to write to him (religiously – pun intended) whenever he was in hospital, I like to call her his surrogate grandma, and she’d like to take me under her wing.
Anyway, how could I refuse a morning tea to celebrate her 90th birthday, wasn’t a full on church service, just a few hymns, which I enjoyed listening to.
I wanted to hang on the sidelines, but perhaps conscious I didn’t know anyone she wanted me to sit beside her, which meant the front row with her walking frame.
So there I am, sitting in the exact same seat where I was during my sons’ funeral. Different setting but I just could not unsee his coffin.
I couldn’t bring myself to look at it on the day, now it’s all I can picture i nmy head, help please

[debsayge]

Hello dear Moon,
Geez you area brave lady, I suppose we just never know how or where we are gonna freak out, and being the private lady you seem you would’ve held all that!! Until now, just let it gush I imagine your heart breaking in that intolerable time…..I’ve actually been meaning to write to you all week but it’s been soooo heavy I just couldn’t….I’ve been completely abandoned by someone whom I thought would never!!!and you think you know people!!! It’s just shattered the tiny bit of confidence and trust I had !!! Plus the support I needed…Been feeling just sooo depressed and similarly I’ve been getting all sorts of flashes (not that I’m ever out of it) of horrors which really kick me when I’m already down ….I see people saying the waves of grief are hard work I think though mine is a tsunami constantly ….
I wanted to say how increadably beautiful the words you posted and yes really shows your sons shining heart …..thankyou for sharing
Love to you getting through another hard day
XxDeb

[debsayge]

Hello dear Moon
Just checking in on you as I’m often wondering how your travelling….every day is just so crushingly hard…here is the only place I feel a little heard and held….I want you to know I’m holding you close today also
XxDeb

[Moon]

Hi Deb, thanks for checking in. I’ve been a mess since going to church, plus it will be 6mths on Monday since I held my baby boy for the last time.
I remember falling apart like this on his birthday in March, then again on Mother’s day.
I also made the mistake of running out of my panic attack meds, and of course couldn’t leave the house.
I ended up calling griefline and chatted with a lovely lady for an hour. She helped me refocus the church setting, remember all the fun times he had there at youth group instead. We talked about my version of spirituality and she encouraged me to keep looking for all the little signs he sends me, which he most definately does.
But I want him here and it’s impossible to fathom never touching him, hearing his laugh, having long convos, sharing music, anything, ever again.
The days seem futile, the silence is deafening, and the winter nights just make my broken spirit feel even colder.
I’ve let go of any expectations of support from others, their lives roll along, whereas mine stands still. Although my loneliness is heavy, I can’t say I really want to hear about what’s going in their lives, with their sons, when mine should be doing the same stuff with them.
When I was talking with the counsellor she wasn’t aware of the huge gap in support there is for grieving parents of adult children affected by cancer. I miss Redkite. She suggested I create my own forum, but I’m a tech dinosaur. But I know that from now on, I can only truly relate to others who understand, I don’t belong anywhere else xxx

[debsayge]

Dearest Moon, Jeremy’s loving Mumma, just to let you know I am sitting with you today, holding your hand on your back porch in the unbearable crushing pain watching for signs from Jeremy…
Much love Deb xx

[Moon]

Hi Deb, Jeremy didn’t let me down ! So I’m sitting on the deck, trying to stop crying as I was getting nosebleeds, when this little puppy wanders into my backyard, runs up the stairs and just jumps onto my lap ! Must have squeezed through a hole in my fence. No tag, so I posted a photo on my neighbourhood facebook page and after 20mins of kisses and cuddles he was gratefully reunited with his owner. Just seeing the relief on the lady’s face has made my day, thank you Jezza !
My friend sent this quote to me at exactly 11.19am, when he passed away 6 months ago today :

” Grief, I’ve learned. is really just love.
It’s all the love you want to give, but cannot
All that unspent love gathers up in the corner of your eyes,
the lump in your throat, and in that hollow part of your chest.
Grief is just love with no place to go”
Jamie Anderson

[debsayge]

So so glad something gave you a small lift today Moon, such an acknowledgement of Jezzas presence around you, so lovely….
Could we talk more about these things, sorry is it ok to ask, feels like we probably have similar beliefs spiritually although I suppose it’s quite a public forum, however it seems like private as it’s quite often just us, anyway I don’t know….
I beg plead ask pray wish hope for signs daily and get nothing that I could say was one, I can tell you it’s making me crazier than I already feel…..
So Moon you’ve managed a really heartbreaking day, I’ve heard/read ? These hard days are worse in the lead up than the actual day, though that hasn’t been my experience as for me it’s all really hard, especially the day.
Thanks for the quote I have that one tucked away in my heart…
I wanted to ask if you’d come across compassionate friends? They are everywhere (though not near me) for people like us who’ve lost their beloved children only, they have groups and chat lines…
Much love for today
XxDeb

[Moon]

Hi Deb, thank you so much for being close to me today, I really appreciate you listening and having this space to download.
Think it’s gonna be an all-nighter, although I’m exhausted from sobbing all week.
Yes, I do believe for me, personally, the lead up to any kind of anniversary, is worse than the actual day.
It feels like my entire being is engulfed, swallowed up in an abyss of despair, and I cannot not envisage how to get through the next moment.
But that unexpectated visit from a stray puppy reminded me, my heart still beats and any compassion I can share will keep me going, I hope.
I remember when grievingmum first posted, she wanted to contact me directly, but we are not allowed to share personal details on the forum.
I don’t know of any other forums or chat lines for bereaved mother’s, if you know of any please introduce me, I need more support for sure.
Yes, whatever I write here goes out into cyberspace, for anyone to read, I don’t like knowing that because it’s so very personal, but I’m so alone,
I need contact with others who are living the same disbelief of the trauma of burying their own child.
I can’t really say that I’m particularly religious or spiritual, but I’m open and watchful for any minor comfort I can grab onto.
They might be rare and random, but this is between me and my son, so I will claim every minor moment offered, and it’s my right to do so.
Deb, there are little messages and signs everywhere for you too, I promise. But just maybe you have to let some things out, to let more in.
I remember you saying how Sayge was learning french, I could bombard you with french muisc, but will leave you with one which always

[Author]

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