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Buried my son on xmas eve

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Home Forums Loss of a loved one Buried my son on xmas eve

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  • #20111
    Moon
    Participant

    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

Viewing 10 replies - 81 through 90 (of 153 total)
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  • #20848
    Moon
    Participant
    #20849
    childatheart
    Participant

    Hi again Moon!

    I promised myself that I would come back and get more involved with what other are going through and after just reading your story, I was speechless. It took a few moments for me to come up with the words I wish to express to you here.

    First of all I am sorry for your loss and I know that those words can sounds cheap or even like a broken record sometimes when we have experienced loss and grief first hand, but nevertheless I mean them all the same.

    Allow me to apologise in advance if this a) becomes long or b) refers back to my situation but of course this is how I can relate to yours.

    There’s a song by the band Radiohead that is called how to disappear completely and I used to listen to that song a lot when I was depressed (I have depression and GAD) long before my parents got sick (terminal illness as you have already read about previously) and after they passed I found myself going back to that song and I commented about it and I had a few replies with sympathy as well as one who was sharing their story about how their parents had died suddenly and how I was lucky that I got to say goodbye to mine. I responded explaining that I didn’t see it as luck and getting to say goodbye wasn’t something I was ready to do nor do I feel better now having gotten to. My point to mentioning this and this is not to devalue other peoples feelings or their experiences with loss and grief, is that seeing somebody you love in and out of hospital, going through treatments and on more medication than you’ve probably ever seen in your life before, makes it extremely difficult. Especially when you see somebody you know known your whole life gradually change through the effects of the sickness and the treatments. One of the medications my father was on for his Cancer literally said “may cause death” and back then and in that moment, I realised just how real this all was and what was happening wasn’t a bad dream. I feel like seeing my parents decline and become less like the people I knew, or rather struggling to hold on to who they were and my father going in and out of hospital, surgery and through all the different treatments, was a pre-grief to the actual grief? Somehow I feel like you would understand what I mean when I say that.

    I think I am having to come to terms with the fact that I will never put this to rest because the simple fact is, I love them. They were my parents they were a big part of my life and the simple fact is that love prevails. I think what we can try our best to do is make peace with what we can but have the understanding that although we may reach a point one day where maybe we don’t cry anymore at the mere mention of their name or the look back on a memory, that the pain may still exist but that is ok. I think as much as it may seem like healing means moving on as best we can and forgiving the way in which they passed or how they were taken too soon, it is also a process of forgiving ourselves. I feel like everybody wants me already healed and moved on and I am struggling I’ll admit to make that peace, but at the end of the day I love them and I can’t be to blame for that nor can anybody blame me.

    Look after yourself and many hugs to you. <3 <3

    #20856
    Moon
    Participant

    Hi childatheart, thanks so much for writing, I can relate to you in so many ways also.
    My mother passed away suddenly when I was 12, never got to say goodbye. My father had bowel cancer which although ‘cured’ metastised into liver cancer years later. Nothing could be done, was given 6 weeks. I cared for him at home myself (whilst raising 4 kids under 5 as a single mum!). It was horrible watching him deteriote so quickly. I find comfort in the fact that he knew I was going to move back into my childhood house that he built and his grandchildren would be raised there. I feel his presence all around me -reminding me to fix the roof…
    I think I was just running on stress adrenilin, it wasn’t until 9mths after his death that I had a breakdown and had to be hospitalized.
    With my son, I started grieving the moment the doctor uttered the word ‘leukaemia’. within hours my son was in the operating theatre getting a central line in. I remember fainting when the procedure was being explained to me. Then all the chemo, total body radiation, fortnightly bone marrow biopsies, surgeries. all the meds and side effects, the gastronomy tube, the new trial miracle drugs, all the successes and setbacks, I have grieved every single moment – 10 years of wondering if he’s going to make it.
    When we were told he needed a double lung transplant I had to come to terms with the fact that they would only last 5-8yrs max, but it was the ‘quality’ not quantity of life that mattered, hard to accept, but his lung function was at 20% so no other option.
    I saw my son blossom, he could have a conversation without coughing, he got a job, had his first dates and was finally enjoying life.
    He still needed the overnight feeds (only weighed 38kg) and had to take like 15 meds twice a day. He’d always been so diligent, never needed reminding – why oh why did he not tell anyone he’d skipped a few ?!. He thought he could catch up, but the rejection process could not be halted.
    He didn’t mean for this to happen, I can’t be angry with him or the doctors, he got the best treatment, but I’m so sad he suffered so much for half of his short life, which was really only just beginning. The fact that this was a preventable accident is the hardest to bear.
    I will never ‘move on’, my life has changed irrevocably, and ‘time won’t heal this wound’. It’s been 20 years since I lost my dad, I can’t tell you how many nights I cried out his name to help me in my distress over my son. I miss him. You are ‘orphaned’ like me, so you will always carry a heavy rock in your pocket, but I can tell you it get’s a little easier to carry xxx

    #20879
    debsayge
    Participant

    Dear Moon
    And all broken people here, just wanting to say I’m grateful to be able to talk a little and appreciate your responses….grateful for your honesty and care I’ve felt reluctant to speak to a councillor as well for the same reasons, there’s just too much to wade through I find even here it can feel exhausting to say as little as I do….I’m a Mumma lost her girl in the most shocking way, my reason for living….I asked every day,through the horror begged take me, hurt me!!stop hurting my child….how do we live! i mean why! Even do we want to….I feel so torn between this world and the next ( although my faith is smashed to pieces) stay here with my beloved boy or?? (we all think about it) I told her everyday from tiny how she rescued me, that I was such a happy Mumma, I couldn’t possibly have loved cared or nurtured anymore, I actually worried when Archer was born if I could love him as much, I did and I do and together I had amazing children, so incredibly close, never even a argument, soooo painful to see him without his gorgeous sister who called him deary, so dreadfully hard for us all….it’s impossible pain….impossible longing.
    How are you travelling my friend thinking of you and holding you close. Along with everyone here
    XxDeb

    #20927
    Moon
    Participant

    Hi Deb, all reading. I’ve got my telephone counselling tom, which I delayed. What has changed since, nothing honestly. I guess I had to explain my life a bit in order for her to know my circumstances, but I don’t want to revisit the past again. I’ve being very low as I don’t trust my emotions. The last session brought up too many feelings of guilt and anger, that I know in my head don’t belong anywhere, but I still feel it. And all this love in my aching heart I can longer devote to my son, oh my, it’s too much.
    Today was a sunny, windy day, so I washed his jumpers and trackies again, cause they fit me ! I wonder Deb if you wear Sayges clothes – I find it comforting…
    I remember loving my first born so much also, then a second one, but then surprise twins, a girl in the mix. I can’t imagine how my twin daughter is feeling, they shared the same cot, same bedroom, every moment of their lives together. Hey has Archer reached out to Canteen yet – remember my family was the face of National Bandanna Day, team leaders etc, also have you tried again with Redkite, if you don’t feel like sharing here. I get that it’s hard to talk about, but we are listening xx

    #20928
    Moon
    Participant

    by Dr. Joanne Cacciatore
    I am a mother. I am a bereaved mother. My child died, and this is my reluctant path. It is not a path of my choice, but it is a path I must walk mindfully and with intention. It is a journey through the darkest night of my soul and it will take time to wind through the places that scare me.
    Every cell in my body aches and longs to be with my beloved child. On days when grief is loud, I may be impatient, distracted, frustrated, and unfocused. I may get angry more easily, or I may seem hopeless. I will shed many, many, many tears. I won’t smile as often as my old self. Smiling hurts now. Most everything hurts some days, even breathing.
    But please, just sit beside me.
    Say nothing.
    Do not offer a cure.
    Or a pill, or a word, or a potion.
    Witness my suffering and don’t turn away from me.
    Please be gentle with me.
    And I will try to be gentle with me too.
    I will not ever “get over” my child’s death so please don’t urge me down that path.
    Even on days when grief is quiescent, when it isn’t standing loudly in the foreground, even on days when I am even able to smile again, the pain is just beneath the surface.
    There are days when I still feel paralyzed. My chest feels the sinking weight of my child’s absence and, sometimes, I feel as if I will explode from the grief.
    Losing my child affects me in so many ways: as a woman, a mother, a human being. It affects every aspect of me: spiritually, physically, mentally, and emotionally. There are days when I barely recognize myself in the mirror anymore.
    Grief is as personal to me as my fingerprint. Don’t tell me how I should or shouldn’t be grieving or that I should or shouldn’t “feel better by now.” Don’t tell me what’s right or wrong. I’m doing it my way, in my time. If I am to survive this, I must do what is best for me.
    My understanding of life will change and a different meaning of life will slowly evolve. What I knew to be true or absolute or real or fair about the world has been challenged so I’m finding my way, moment-to-moment in this new place. Things that once seemed important to me are barely thoughts any longer. I notice life’s suffering more- hungry children, the homeless and the destitute, a mother’s harsh voice toward her young child- or an elderly person struggling with the door. There are so many things about the world which I now struggle to understand: Why do children die? There are some questions, I’ve learned, which are simply unanswerable.
    So please don’t tell me that “ God has a plan ” for me. This, my friend, is between me and my God. Those platitudes slip far too easily from the mouths of those who tuck their own child into a safe, warm bed at night: Can you begin to imagine your own child, flesh of your flesh, lying lifeless in a casket, when “goodbye” means you’ll never see them on this Earth again? Grieving mothers- and fathers- and grandparents- and siblings won’t wake up one day with everything ’okay’ and life back to normal. I have a new normal now.
    As time passes, I may gain gifts, and treasures, and insights but anything gained was too high a cost when compared to what was lost. Perhaps, one day, when I am very, very old, I will say that time has truly helped to heal my broken heart. But always remember that not a second of any minute of any hour of any day passes when I am not aware of the presence of my child’s absence, no matter how many years lurk over my shoulder, don’t forget that I have another one, another child, whose absence, like the sky, is spread over everything as C.S. Lewis said.
    My child may have died; but my love – and my motherhood – never will.

    #20944
    Moon
    Participant

    Hi there. Had my griefline telephone counselling session today, grateful of the chance to talk unabashedly with someone who knows my story and willing to listen even if I repeat myself. I definately recommend. I’ve run out of words now, lots of emotions so first thing I did was listen to my sons’ fav band to ‘debrief’ myself:

    #20945
    Moon
    Participant

    I only listened to this one after he passed :

    #20950
    Moon
    Participant

    His mates, band members, played this at his service, hey I grew up with them, taught my children well, as Cat Stevens said …

    #20965
    debsayge
    Participant

    Dear Moon
    Just saying hello and thinking about you….wanting to say how much I appreciate you! Reaching out to all here, with such heart, also for Joanne’s symphony of our collective grief….that song (I still can’t listen,) though know them all, wish you were here echos through my heart all the time….you know Moon everyday I say I can’t do this, everyday I feel is worse than the day before, but there all worse, you say you can’t trust your emotions! Ohh I understand as they are so extreme, I also recognise though they are a mirror(or the flip side) of our absolute love for our babies, do you think that?
    Our lives are frozen in time and the world keeps going, it’s the cruelest gig ever…..like dear grieving Mum says we are just enduring this pain….so again thankyou for enduring this with us all here
    Much love, to get through yet another day, let’s just keep hanging on
    XxDeb

Viewing 10 replies - 81 through 90 (of 153 total)
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