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-Mancha1]

Hello Jezza,

thank you for sharing your story, as hard as it must be, I read it with a growing sense of what an amazing mum you are, and how much love you hold. I can feel the exhaustion and pain in your words, and given what you’ve experienced I think those feelings are perfectly normal. I wanted to congratulate you on reaching out to others who can share their experiences, whilst I can empathise (I nearly lost a daughter a few years back) I know others in the forums here can share their experiences, their grief and their strengths.

In the meantime, I just wanted to share some resources that might help. It’s so easy to lose sight of the fact that the basics can help us to cope – eating, sleeping and connecting with others. This link on the GriefLine site will help with that: https://griefline.org.au/resources/east-toolkit/

It can also help to identify your strengths, coping with grief can be so hard and we sometimes need to use every tool we have, starting with those we forgot we own. This link on the Griefline site can help you to identify where those strengths might be: https://griefline.org.au/resources/grief-recovery-part-1-in-search-of-lost-strengths/

Please stay in touch with the forums Jezza, we’re here and listening.

[VM-Lily105]

Hi @Jezza

VM-Mancha1 is right – you sound like an incredible mum! You must be very strong to go through what you have. Your children are very lucky to have you.

It is completely understandable that you are struggling right now. It sounds like you are holding a heavy burden, first having your children leave the “nest” then tragically losing your son. You must be feeling a sense of loss not only for yourself, but for your family, and for what your son’s life may have been. It would be particularly difficult having seen him get so well after his transplant last year.

Are you in touch with any of the other families who you may have met through your son’s treatment at Westmead and St Vincent’s? I expect some of them may share the same feelings of loss and grief associated with having a child with a long-term illness. I wonder if you could reach out to them for support?

Our online community is also here to help you through this difficult time.

[Moon]

Hello Manchal and Lily, thank you so much for replying and reassuring me that I am not alone, however much it feels that way right now.
I’ve been searching for support but keep coming up against brick walls. 4 month waiting list to see a pysch and few organisations offer online support, which is what I am seeking most. I have spoken with beyond blue/lifeline on occasion, know there’s always a friendly voice on the end of the line to listen when in need, but I find myself just agreeing with all their much-appreciated suggestions to please the volunteer. I wish there were more charities/services for parents of adult children.
My son and I both found it very challenging transitioning from Westmead Childrens when he turned 18. We’d spent most of 8 years there, knew all the doctors and wonderful nurses, and yes a community of parents. I’d slept beside him throughout all his hospital stays, we had Starlight Foundation, and importantly for me, one on one counselling with Redkite. Transferring to an adult hospital took away our trusted support network in so many ways…
Hoping this is a safe space to share some thoughts however maladroit they come out:
I wish my son had died in the childrens’ hospital, surrounded by doctors and nurses he knew, trusted and loved, and that I could have been beside him 24/7. He was only 19, didn’t belong in a ward of 60 + year olds, with restricted visiting hours…
I wish my ex-husband hadn’t turned off life support when it was his turn to visit (not an amicable relationship). I really, really wanted to hold my baby’s hand whilst he was passing and I know he wanted me beside him….
Wish you were here ! Pink Ffloyd – that was his funeral exit song, played by his friends band…
So I’m sitting on my back deck, watching the kids next door muck around on their skateboards, I love it, but with tears streaming down my face, as I’ll never see my son skate again. Nothing will ever be again. This house will never be full of the sound of childrens’ laughter or teenage ‘balcony d & m’s’ – conversations again.
It will be 3 months this Saturday, I still wake up each morning, well at 3am, and sob, then again several times each day, it just seems to happpen, whether I’m thinking about him or not. I guess there’s a lot of pent up emotion in my body, but I don’t like crying, especially when there’s no one around to give you a hug or a cup of tea.
This is why I’m reaching out, hoping to share with others grieving, who might like me, prefer to express themselves in words.
I’ve kinda morphed into my son, I’m wearing his clothes ! Well I was short like him to start with, but have lost over 10kgs since he died. His twin sister has now moved and returned all his clothes etc to me. Was so bittersweet putting them back in his bedroom drawers, had to try everything on.
I don’t know where I’m at in my mourning, understand it’s very individual, but feel good that I was able to put back all the photos on the fridge today, had to take them down for a month, but now I can walk past, kiss his forehead again.
Thank you for the space to express and be heard xxx

[onlinecommunity]

Dear @Jezza, welcome to the forums. Our hearts are with you after the passing of your beloved son. ❤️

We are so glad you have found some support from the forums community as you navigate your grief journey.

It sounds like you are in need of extra support right now so we wanted to let you know that Griefline is offering online support groups (currently for people living in NSW and Victoria). The next group starts up on 3 May. You can find out more information and register at https://griefline.org.au/get-help/support-groups/
You are also welcome you to email our intake team directly at this email address: [email protected]

Thank you for sharing your unique grief experience with us here – the therapeutic nature of expressing yourself in words is exactly why this space exists. And the way you describe your grief journey is so visual and poignant – we’re sure it will resonate with so many others here.

Wearing your son’s clothes and looking at his photos is such a beautiful way to connect with him… continuing bonds with our loved ones can bring comfort. Whether it’s through wearing something of theirs, talking to (and kissing!) their photo, writing letters to them, playing their favourite music etc. Though he is no longer here in person, the connection you have with him can stay with you always.

It’s heartening to hear about the warm, supportive and nurturing experience you had at the Children’s Hospital which is exactly what you and he deserved as you traversed the hardships of his illness. We’re sorry to hear that experience didn’t continue when he moved to adult care.

And not having the chance to be there at the moment of his passing must be hard to come to terms with but we are sure that he passed knowing the depths of your love for him and feeling all that love in his heart – all the love you wrapped him up in throughout his whole life 💕

Keep posting @Jezza. We are here for you. 🌸

[Moon]

Hello and thank you for your reply and suggestions. I registered for the online support group in May. I’m in NSW so will have to do zoom for the first time ever. Already anxious but know that I need this connection with others, also mourning. Maybe I’ll just listen and learn, or maybe I’ll manage to say something that resonates with another, I’m willing to give it a go. I know my son would want me to push against my social anxiety and reach out. He’s seen firsthand the empathy and simple company I’ve shared with other parents throughout these years and would not want me to feel so alone. I, too, know I’m at my best when I feel like I have something to offer.
Pretty empty right now, so I’ll claim my space to empty my thoughts here, in the hope that some of my words might also express feelings shared by many. I’d be grateful for any hints on navigating the outside world with this heavy rock in my heart that robs me of my breath daily.
Sometimes I wonder (even behind the mask) my eyes tell-tale, just going to the supermarket I feel people look at me differently, as if they know. Other times I feel completely invisible, I walk past people chatting, laughing, and feel like I no longer exist in this world.
Phone calls from few friends wane, they no longer mention his name, send me photos of their kids and stories to cheer me up ? which I’m grateful for, but also causes me pain.
Yes I’m sitting here wearing my son’s clothes, listening to his favourite music. A common voice, way to express I shared with all my children…
In one of our last conversations, Jeremy thanked me for growing up in a household full of music, noise, friends and fun plus sent me his spotify list which I’m listening to now.
My son always thought of others first, never complained, though he had bloody well reason to. He was so very humble. I miss him so… thank you for listening xx

[VM- thanasis43]

Hi Jezza,

Thanks for keeping us updated. I’m glad to hear you’ve reached out to a support group, after everything you’ve been through and the strength you have shown through it all, the Zoom session will no doubt be taken in your stride. You can feel comforted by the fact that the other members of the group probably feel the same way too. Maybe even share with them that the session makes you feel a bit anxious.

It is great that you are still connecting with Jeremy through his photos, clothes and music and I love that he reassured you of what a wonderful home environment you created for him. You should feel so proud of the love and support you provided for Jeremy.

Often we are better at looking after those around us than ourselves! I’m wondering whether your appetite has returned and you are getting the nutrition that supports your mental health too? Sometimes lacking certain vitamins and minerals can contribute to anxiety, like the social anxieties you spoke of, so ensuring you’re eating and sleeping well can help reduce these.

May is still a while away, so I’d encourage you to continue checking in with us here to let us know how you are doing, share memories and reach out to other members on the forum too.

We are always here for you.

[Moon]

Hi Thanasis, all, anyone, reading, thank you for reply. A facilicator for this support group in May called me today. She is going to call me again on Friday to explain how these sessions work, see how it might be helpful for me, plus understand my personal grief story. I’m very grateful for the opportunity, although nervous, as I’m more of a listener in person, on the telephone, never even done a video chat, I express myself better in written word, hence my hello here again.
I’m hearing you on the point of looking after my physical health, something long forgotten. Proud to say I had vegemite toast today, when normally I only eat dinner. In my head, Jeremy is saying to me, wish he’d taken his meds, so I’m drinking those effersecent multi-vitamin drinks and vita-gummies, obviously adverse to tablets…
I do know phsyical exercise is also very important but with limited mobility and agoraphobia, challenging, still I’m trying.
I still can’t do a proper supermarket shop, have to pick empty times, 12 item aisle. Sometimes that means I sit at the bus stop for half an hour for the next bus home, but I’d rather an empty bench than walking past happy families. I’m about to burst into tears at any minute !
It’s complex, on the one hand I yearn company, ( I live alone) but on the other I can’t stand to be around the living, going about their daily lives, whereas mine has forever changed. I can’t see this rock of grief I carry getting any lighter.
Intellectually, I know it does, as I’ve buried both my parents, but no-one should ever have to bury their child, it’s totally different because they are part of you, gave them life, so there’s an innate guilt of not being able to protect them…
I sit on my back deck each day at sunset, often a butterfly will come say hello, I warm to that. Thanks for listening xx

[Moon]

https://l.facebook.com/l.php?u=https%3A%2F%2Fyoutube.com%2Fwatch%3Fv%3DSZDixM6DyyU%26feature%3Dshare%26fbclid%3DIwAR1myaC9hXhmRkBrXlXWxUybHuibDZDpHH7K0zPSzNKzKx8LNxvlmJ0TQBE&h=AT3bP65V5mLfgEga2E7XgmE1I2Nt4wnfXRUR77sGBD8fx_DXmcXQx7-eEEznMkLeLLHipZTu0OyCW7A_rxCdp9D9Z2thP4pmLbq8XlZIjrWKA15QfHMHK2gT4TwqfrMAW4y7&__tn__=%2CmH-R&c%5B0%5D=AT28IkOvUOCDo5IOWam87I34vwwzZg1EIk5GxfMgx1svMHOaxVgip8Fb8yBGFuU-QivTDhVSatZtMFE1532N-ySsmKjoUeUg54d8rxsvvVEAkJuKWh32h32ux701p2-xA7ydU1sGrJRpAkIth1vk9lSz

[VM- thanasis43]

Hi Jezza,

Such an emotive song, thank you for sharing that. There is nothing like music for helping us connect with our emotions.

How did your call go? Are you feeling more prepared for the Zoom?

It’s so pleasing to hear that you are eating a bit more and taking vitamins, it may not seem like much but it is more important than ever to look after your body when your heart feels broken.

In terms of exercise, I can appreciate your limitations. I wonder if you are able to do a quick yoga or stretching video (from Youtube) that might just release some of the tension from your body?

I can relate to the feeling of wanting company but also not being able to be among people who seem to have no idea how changed life is for you now and I think connecting to people who have gone through similar experiences (whether they are strangers or close friends and family of Jeremy’s who you feel comfortable talking to) might be what you need at the moment. You have taken great steps just by connecting with us here and connecting to the support group and it is great to see you sharing your experience and offering support to others on the forum too, because when we lift others it lifts us too.

Keep talking, Jezza.

[Moon]

Hi, I forgot to explain the context of that song. It’s from my sons’ playlist and this is what he sent to his twins sister before he passed, and she read it at his funeral ” alway’s you and me” so true.
He sent me the following song called “family”. If you listen to the words you” begin to picture just how humble and generous he was, always thinking of others right up until his last breath: I’ll check back in later, just a bit teary listening to this again xxx

https://l.facebook.com/l.php?u=https%3A%2F%2Fyoutube.com%2Fwatch%3Fv%3Dclwfk_Pip40%26feature%3Dshare%26fbclid%3DIwAR3yGM4XeUYh0hLlKz-Sf_46lQGdZKdeBTtoTNo_iaQC3w7ObTcdo-XALl0&h=AT3_HwsCwcVrYf5Rjb76gJPI8q-bCQObwwLznOSzk93_6A8CRdhDu40QWupR6kK7sYEqSq7FlQuKO3xMbHxyTa8NVCqtxR2SLq2Tb_gaI75u6sB5Crfpnl4M1pcU-VJJj8Zh&__tn__=H-R&c%5B0%5D=AT3LRtD9qYZV1iWlQu2cI-c-ghHAHq875acS2EUdkc9Dq8M3gR_33Fr9AXMzvMpZBfxfW3wbqQwDm7VzKbbatcYasKARO4VGH_oZCFxnYwMYzJCSsvBPJ2ofo28YfR7BBGhvrgRoOXryy6DqEg7mC-q_

[Author]

Replies