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

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Home Forums Loss of a loved one How to navigate Early Grief, Lost my 6 year old daughter 3 weeks ago. Reply To: How to navigate Early Grief, Lost my 6 year old daughter 3 weeks ago.

#20435
Moon
Participant

Hi grievingmum, it’s Jeremy’s mum, I responded to your other post, so glad you found the courage to write again, I’ve been thinking about you.
Tomorrow morning at 11.19am it will be 4 months since I hugged my 19yr old son for the last time. I’ll be sending you a hug at 7.30am…

I wonder if you found that poem about grieving mothers I mentioned, it encapsulates so many of my feelings that I venture to guess you might as well.
The questions you ask, I think we’ll ask ourselves forever, and any ‘answer’ proferred is meaningless, because as you say, it’s just wrong, not meant to happen.

As you know my son underwent a bmt after relapse of t-cell ALL, it was the last option and his twin sister was a perfect donor match. Still he developed gvhd of the lungs, requiring a double lung transplant January last year. He was recovering so well, got a job, his first girlfriend, back into skating, missed a few anti-rejection meds (which no one knew) and was dead within 3 weeks, despite all the best efforts of his doctors.

I remember reading all the potential risks of a bmt. We’re crawling in bacteria all the time so when you’re immuno-suppressed they go crazy. There were 4 kids we’d known since diagnosis undergoing it at the same time. Sadly, one boy died of an infection in his brain very suddenly, like your daughter, the other two didn’t make it either, after months of suffering. I held my breath for 9 years, willing my child to survive. I don’t mean to add to your burden, just reassure you there are many parents who walk by your side.

I first posted here because there’s a long waiting list to see a psych and unfortunately because my son was an adult I no longer had access to the support groups I had relied upon at the children’s hospital. I’m sure you’ve heard of Redkite, they were my saviour, I had a counsellor who’d email me everyday. There’s also camp quality for your boys, and once they turn 12, they have Canteen up until the age of 25. My twins were the face of National Bandanna Day, be brave and shave for many years, I truly encourage you to introduce them, if not already, they were a godsend for my kids.

Your sons know that your love for them has not wavered but may be unsure how to comfort you, or themselves. I’d give them something practical to do with their hands. Maybe they could honour their sister with something handmade, help you plant some flowers or a tree, let them cook dinner, even if it’s baked beans on toast.

Tomorrow is going to be a very hard day, so try to think of some little joy you can add to the day amidst your grief xxx

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