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

[VM-ocean]

Hi Jezza,

I just wanted to second Sunflower’s comments – I’m so glad you went to visit the lady, and I think it is very generous and kind how you support others on the forum.

I’m sorry to hear that his clothes are losing their smell. Wearing his clothes seems to have been such a comforting thing. I hope the clothes themselves can still comfort you.

It is beautiful that Jeremy is sending you other signs. Thank you for continuing to share – I’m glad you’re a part of our community.

[Moon]

Hello grief community, thanks so much for replies, just listening. I really appreciate this space to express and be heard.
I want Captain Powers from the Starlight Foundation to come pay me a visit, I’ll win the quiz of course, 10 yrs practice 3pm bingo at the Children’s Hospital.
Who’s going to play cards, scrabble, all the games the nurses taught us with me now? I miss my son so very much…
When you sleep beside your child for months, years, in those impossible pull out hospital chairs/bed you spend a lot of time together.
I have not forgotten the solace of sitting silently nearby another grieving mother underneath the trees. Many I came to know. we’d meet often in the late hours
Guess that’s why I’m here, because you are beside me now, thank you.
I’m fortunate to speak french fluently so could help our nouvelle-calodiennes mums navigate things a bit. Can’t praise Westmead Children’s Hospital enough
for their inclusive french co-ordinator. I’d like to give back somehow, but not just yet. Not sure if I could again.
My son and his twin sister were the face of Canteen’s National Bandanna Day, Leukaemia Foundation ” be brave and shave’ campaigns for many years.
I can’t share content, but they are on their websites. My daughter helped create their ‘mindfullness’ app for siblings affected by cancer.
I should listen again. I do sit in nature, feed the birds, but with such a nostalgic stab to the heart all the whilst.
I’m sitting on my deck, alone, memories of childhood birthdays both blessing and agonizing my head. Time to turn on music, jezza’s calling me xxx

[Moon]

Hello, another day of sunshine here, I actually filled up the green bin with all the branches.
Must admit, kinda felt carthatic cracking them into pieces. I accomplished something more than the basics yay.
Ok, so whatever gets you through hey, guess what I did when Jeremy’s shirts no longer smelled like him – spray them with his fav deo again !
Although he and his twin sister had moved out together already, their bedrooms remain unchanged. I open and shut the blinds, sit on their beds,
every day. I’ve also messaged my son, although I know his accounts are no longer active. And of course I talk to his photos, oh my I miss him so xx

[Moon]

Hello, I managed to plant some new flowers on my deck this arvo, whilst listening to a fav band, my son and I shared

Miss dancing with him … xxx

[VM- thanasis43]

Hi Jezza,

I’m so glad to hear of the breakthroughs you’ve been having. I hear you feeling stronger and more empowered even while still suffering. You should be so proud of your progress, none of this is easy. That you are feeling capable of meeting people and sharing your story on the forum and in-person to help others is wonderful. We all know the pain is still present but it sounds as though you are getting better, bit by bit, at managing it. Still thinking of you and sending hugs.

[Moon]

Hi there, thanks ‘Than’ for you feedback, I appreciate you ( and all others ! ) following, what I guess could be called my journal?
Can’t write a shopping list or remember to take it with me, so let’s call this ‘lnr’s – late night ramblings.
Oh how I miss having them with my son and his friends, all thoses sleepovers.. I was the cool mum, go to house, music and yummy food always.
Now these bedrooms are empty, and will never be filled again with the treasured sound of childrens’ laughter ..
I want to share my good moments, because yes, my body and mind are adjusting slowly, and every day is different.
Last night felt horrible, I experienced such a wave of anger, I had to put my music up loud and dance it out. Kinda wish there was somenone closeby in those moments yeah.
I always wake about 4am, with the birds, usually from a nightmare, is this really so ? I lie awake, stare outside at them for hours, day-dreaming of my child.
There are so many words left unsaid.. I want to rewind time, remember the family holidays when you were well ?!
You beat cancer twice, how can a few pills missed take your life, just when you were at your best ? It…. suck, tear drops

[Moon]

Hello. My friend went to see a movie with my favourite actor – french – Daniel Auteil.
Of course she didn’t extend an invitation, as if i would go, but glad she shared with me.
Best movies ever Jean de Florette/ Manon de sources. I played Verdi – le requiem at my fathers’ funeral.
Different songs played at my sons’ funeral, but felt like listening again.. I need music to fill the void xx

[Moon]

[Moon]

[Moon]

Oh my, I’ve been sobbing all day long, I can’t turn off the tap today. Nothing specific happened, just feels like an explosion within.
I was sitting on the deck with my budgie and uninvited tears were running down my cheeks again . Oh how I miss my child…so very much.
We had 2 border collies, 2 cats, rabbits, guinea pigs, budgies etc, the noisy ginger cat is the last survivor, keeps me focused somehow.
But even he turns away if I’m sobbing silently. Makes me feel like I’m broken and unworthy. Yet he’ll still come steal my pillow at night.
I’d like to insert swear words here, I’m just not in the mood for more Mother days’ sales ok. I’m a mother without her child yeah.,,
My son is buried next to my parents, he’s got good neighbours, I’m not sure if I want to visit next week, or any time soon sorry.
My sons’ dad, my ex since forever, arranged the plaque, which none of his siblings were ok with, so I’ve only visited his site whilst the I laid flowers where still blooming
He’s not there, he is here with me. I catch brief glances of his presence when I least expect it. I wait for those moments of intimate, however brief moments of solace.
I can’t help but think of my father in his dying days, so humble, always caring about others first, that was my son also. So many words left unsaid.
so I write here in place, thanks for listening, I’ll share more music, if that’s ok, it’s my language xxx

[Author]

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