How to navigate Early Grief, Lost my 6 year old daughter 3 weeks ago.

[grievingmum]

My 6 year old daughter had been undergoing chemotherapy for the last 2 years and 4 months for B-ALL at QCH in Brisbane. We were 3 weeks out from ringing the bell, when we discovered she had relapsed. Even though we were devastated at having to return to living at hospital for treatment, there were still many options available to us, our oncologist was optimistic. We were in re-induction preparing for immunotherapy and a BMT, when she suddenly died of a a fungal infection in her brain. It was growing there, as a runny nose, up her sinuses to her brain. 3 days after her 6th birthday she died in ICU. We were in the safest ward, in the safest room. How does this happen? She went from physically strong and well to dead so quickly. How?
How can I be holding a joyful alive vibrant child one minute, and have nothing but ash the next? How can I be still alive when she is not? It’s wrong. It’s all wrong.
It’s been 21 days tomorrow morning at 7:30am, since she died. It’s early days yet, but I can’t see the point in anything.
I can’t see a future where there is any joy. I have 2 other children, her brothers, 9 & 11. Which people are reminding me all the time, as if I’ve forgotten. And I’m sad for them as well, our happy family is shattered.

Topic

[debsayge]

Dear mumma of your beautiful scout, just in case you’re still checking in here, holding you in my deep heart at this time of the year…as I know how terribly painful these times are to travel through……often thinking of you and your broken hearted boys.
Hoping you’ve the sustenance around you to hold you at this time
Much love
For always
XxDeb

[debsayge]

Dear scouts beautiful mumma,
Just checking in on you my friend and hoping you still have the comfort of those beautiful saints around you and are holding you, we so need other people to care about us, care about our children. It’s only the love that matters now…..
Thinking of you always and loving hugs for all you endure, every moment. Love to your family.
Always here for you to be with
XxDeb

[debsayge]

Dear grieving mumma
So much love to you, always holding you in my heart
XxDeb

[Moon]

Hi grieving mum and other grieving parents. I find it hard to reply sometimes, but I’m always reading, checking in ok.
On Saturday it will be 8 mths since I last held my beautiful boy. Instead of anticipated grief insomnia, I had wonderful dreams of all the birthday parties we had. All the themed home made cakes I made, all the excitement of pressies, the noise and laughter came flashing back, so I woke up smiling for a change.
I have no doubt that my son was saying hi to me, – you know he always sends me little signs, which I wait for patiently.
I believe this reminder of all the good times we shared was a signal for me to close this post – and start a new one, maybe something like “living without my child”??
Because somehow we’re doing it… but I absolutely cannot unless I have others’ to confide in, who are living the same story – cancer diagnosis in particular.
I know other grieving mums have other children, I also have 3 others, but am sadly an empty-nester. I wasn’t prepared for any of this ..
So I’d like to start a new post/thread we can not only share our unique grief, but share our little successes- albeit cutting your fingernails, whatever.
Today I dyed my hair – that’s pretty big for me.
As much as no longer feel part of this world, and never will again, I’m only half here – I understand the only comfort I will find in my grief is by sharing my humanity.
Thank goodness I can smile at an old man walking down the street, or a baby in a pram without a mask on these days, that’s all it takes for me to brighten my day.
And I know my son is right behind me when I also pat the cats and dogs on my little walks xx Will you join me in a new thread ?

[grievingmum]

Dear Deb,
Your words speak to my heart. I understand completely everything you are saying. Your home sound like an oasis.. I picture it being very idyllic. We used to be similar in our interests, always outside, we had built a frog pond, and had tadpoles right before Scout died (that’s my girl.) Now none of us want to go out there. It sits unloved and over grown. It all hurts too much. We are all so sad and empty.
The pain is never ending, and I’m actually tired of myself and the person I am now. But nothing can ever change. It’s so hard to explain to someone who hasn’t lived it, but there is no changing this. No accepting it. I don’t know myself. I used to feel joy and optimism, but now that’s impossible. So what is left? I completely relate, we too are zombies going through the motions.
I sometimes remember how it felt to cuddle her in her room, and how everything in the world felt right and at peace. I will never feel that again.
We have also lost friends, who I thought of as family. I am not sad about it, more of a burning anger, because my little girl deserved better than for people to turn away because its “too sad”. These people only need to turn their thoughts to it for short time, and then get to go back to their own whole lives.. but they cant even spare us a thought because it’s too uncomfortable for them to face. Did we get that choice? No. We face it day in, day out. I have no patience for that weakness in character.
I have also gained friends from unlikely places that came together in chaos, at a time when we needed people to help us. It has bonded us together in a way that can never be torn apart. I am blessed to know them, and have them around me. They listen, patiently, to my repetitive draining sadness, they let me feel what I need to. They have helped us survive. I feel so lucky to have them. I hope that you gather your people to you too. They are there.
I know exactly what you mean, there are no maps for how we go on. When my brain goes to the future, I can’t understand or see anything. It’s not enough that we have lost the sunshine in our lives, that we miss her every day, but that we are now outsiders from society. It’s also hard to care though.
I know you said before you weren’t ready to open up yet about how Sayge died, but I hope in time you will. There are so many layers and complexities to this deep grief and trauma. For me, it’s not just that Scout died, but the years of pain she endured before she did.
I’m thinking of you and sending love, my sister in grief.

[debsayge]

Dear broken friend
thank you for your letter as I respect how hard this can be. It is always so lovely to hear from you.
I am the same as you grieving mumma, going under so much, I cry on waking and sleeping and in between just a wreck, every aspect is a challenge and unending despair.
Oh your son, so much love to both, all we can do is keep them very close.
I’m grateful actually I’ve always kept my children close, Archer went through all Sayge’s ordeal we just stayed together, gosh I just wish you were closer so they could be together Archer with his grief (he wouldn’t realise this) has made a huge mini golf course in part of our property,it’s taken him a year or so, takes 2 hrs to play plus many other building projects so I see he’s being very creative…the kids and I, well that was always what we did…that’s what we do weed, garden, play mini golf, like tired sad zombies, I cry a lot and he is very compassionate and patient, he’s lost his absolute best friend, me also,my perfect person, and I see that he’s so so sad, and we are all so so exhausted.
We are also despairing over some family friends who just suddenly abandoned us, it’s been crushing too. I’ve gone under with the betrayal, but now realised, we are better off and hopeful to make more loving friends(here is a good place to start, we’re the only ones who know)
I just feel like weve been flung in some parallel universe now where we don’t know where to go, don’t know the language, and we’re invisible to everyone.
I’ve been slowly absorbing Joanne books, I find the small grieving is loving the best as I feel like I have a friend who speaks my language, I mean not one thing helps, however hopeful I can keep my bleeding heart open. Just hurts so bad.
I’m hoping we can speak again soon, I love you so much
XxDeb

[grievingmum]

Hi Deb, thank you for your thoughts, and checking in. It means more than I can say. I have also thought of you often, and how you are faring.
We have been feeling pretty terrible. It just feels impossible, and never ending. My son has turned from a joyful, cheerful, happy boy.. to an angry one. It feels so unfair that not only have we lost the baby of our family, but that the rest of us left behind are so broken. It feels like everything is ruined.
We are going through the motions of life, but feeling nothing but despair. How are you?

[debsayge]

Dear grievingmumma
Just a warm caring hug for my dear friend, much love for you today, please know I’m sitting by your side
XxDeb

[debsayge]

Dearest grieving mumma,
So much love and heartfelt care to you today, thinking about you..
XxDeb

[debsayge]

Dearest grieving mumma
So much love to you today, you know what!! I thought it was just me with those feelings !!!you have described, I so hear you, our hearts are aching and aching every waking moment for our precious children, yes I hear you and every day now since the 15/01/21 I’ve had no change from the shock and horror of losing my girl, I feel like I’ve collapsed inside…..every day I say I just can’t believe this and where is she and all that….I can’t do this, I don’t even want to….we are all struggling here together and together we are all holding you and each other….
I’m just weeding and watching for my beloveds signs??
So much love for us all, to keep enduring…keep sharing dear broken sister, we are always here
XxDeb

[Author]

Replies