My son is dying

[blindspots]

This is fucking cancer. He is 2. We are only 3 months from diagnosis and we are out of active treatment options.

I hate cancer, I hate the pandemic disrupting our world and keeping us from people we love.

He has been so tough she and strong and there is nothing more they can do, the cancer just keeps coming back.

I would give everything to keep him

💚

More funeral stuff today blah blah blah. Writing a death notice for the paper. Making decisions about chapel catering and if we hold a wake somewhere or at home. It'll probably be both regardless. The more administration side of things I do the angrier I feel to be honest.

Five year old full of tears today, not about her brother on the surface but I'm sure it plays a big part. The girls had some big fights today which wasn't nice at all but I know they have a lot of emotions going on too, even if they say they are angry about who's got the scissors and who used the glitter. Life goes on. Having to choose an urn for my son over email while looking for another pair of fucking craft scissors.

We have had a candle lit which we keep on all the time, we have his photos next to the candle and we talk to him, say good morning and good night. Today I apologised to him for not being able to keep him

I'm so sorry Op xxxx

Had to find appropriate readings and blessings for the funeral service too, Another job ticked off. More blah blah

I happened to write the words that will form the basis of his eulogy last Friday night. He was still alive and not even that sick at the time (well apart from the fucking cancer obviously) but we had been in and out of seeing the palliative care team and I wanted to get the words down while I still could. We still thought we had time then. I'm glad I did so we don't have to write it all now

Thinking about you OP. You’re in another country on the other side of the world but you’re in my thoughts. I will keep checking on here for your updates. ❤️💙

@DifficultPifcultLemonDifficult and another PP I think referring to the numbness and detachment as you said it's the keeping busy and knowing I am doing things for him, looking after him even though he's not here which although hard, keeps me going.

I'm even still washing his clothes.

I think I know when this busyness passes and the house empties it will get a whole lot more difficult.

I'm full of talk about all the things I will do to keep busy, to make it easier for myself, and to keep him in our lives if not in my arms. I know none of it will be easy

I bloody grieved when our big overseas holiday got cancelled this year, in mid March two weeks out from the trip we'd been planning for a year; I actually sobbed for days.

Imagine when I thought that was the worst thing I would go through. Silly blindspots

@blindspots
I think the numbness was my bodies way of coping with the shock. Your right it is when the busyness passes and the house empties is when the grieving starts.

I'm so sorry for you and your son it's devastating. I don't know what to say I wish I could help.

I am so sorry.

I am so very sorry.

Is there someone with you to look after you? A partner, parent or friend maybe? You've got a lot to be organising as well as looking after your girls. Make sure you're looking after yourself too, you need to keep your physical strength up.

After things have settled it will be difficult, it may sink in more and hit you like a tonne of bricks but it's necessary to feel that pain and emotion and loss. Make sure you've got plenty of support around you so you can completely let it wash over you. It will get better to cope with with time.

Thinking of you all xx

Perhaps the hospital might be able to put you in touch with a support group?

I don’t know if this is of any help at all. Thinking of you all. www.cancer.net/coping-with-cancer/managing-emotions/grief-and-loss/grieving-loss-child

I think some sort of external support is a very good plan even if it feels like the last thing you want to do right now.

If you have or can access Zoom this link might be worth having a look at:

https://cancerpathways.org/programs/support-groups/

.

I'm full of talk about all the things I will do to keep busy, to make it easier for myself, and to keep him in our lives if not in my arms. I know none of it will be easy

Its so hard. Each year on my children's birthdays we have angel cake and sing happy birthday for them. We have their photos up in the house, my kids add their names to my mothers day cards as well. It sounds morbid I guess, but it works for us.

You'll find your ways, as a family, to remember your wee man, and it will bring you comfort in the future, as you establish your traditions and ways to remember his life.

I'm not going to ask how you are today, I know you'll be going through hell, but I'm hoping that you have gentle times where you can rest as well.

I'm so sorry for your loss,you seem such a lovely family..I appreciate the way and the fact you have shared your story while suffering the worst nightmare of any parents imagination,You will keep your sons memory alive just in the peoples hearts you have touched on here not just in your own,I hope eventually you find some peace in your heart and know the amount of love for your son you gave him was all you could do and did do and that was enough x

I made a playlist today. 7 hours of music. When the other children go to bed I look at his photo and the candle we have burning and talk to him and cry. Just listened to "All I Want" by Kodaline. Holy fuck the emotions!

The state in Aus I live in went into lockdown today. Funerals restricted to 10 people etc. Tons of messages saying "oh no".

Actually don't really care about the lockdown. The worst thing in the world has already happened, this is nothing.

How much harder would it have been had it happened when he was sick or dying and there were no visitors allowed, or only one parent?

The funeral is for us and having 10 people there or 100 won't make it any easier. He's not going to know

I do have a very good DH, he does nothing wrong but I am just so angry that this has happened to him, to us all.

It's such a heavy cross to bear.

Yes I will seek professional support etc. The palliative care team said support would continue but I hereby heard anything from them yet. Red Kite is another big childhood cancer charity here. Not heard from them yet either despite reaching out on Wednesday last week?!

I want real support from someone who understands the grief of losing a child, not some generic 24/7 support where people post on the grief/ bereavement pages about losing their dog (I get that it's a big deal, but it's not the same thing by any means)

You will find that support OP from other parents going through what you are.

The numbness was replaced by anger with me.
Grief is a long long road.
Take care of yourself.

My little boy. Gone in three months! Not even 4 months from diagnosis to his death.

I'm still in the trauma of him actually being diagnosed let alone caught up to him already being dead.

As I said to someone earlier - how on earth does the world keep spinning on its axis? I go to bed and fall asleep but when I wake up it takes me a moment to remember/ not that I forget but to remind myself it's not a dream. It actually happened!

And yet the sun still rose and the earth still
turns and the birds still sing and how the fuck does all of that still happen because my world is stood still

I'm so sorry, OP. You're quite right, it's totally unfair.

@blindspots there is no rhyme nor reason and that's so terribly difficult to accept. Why your beautiful boy? I'm so angry on your behalf. F cancer 💐

We had the viewing today. It was nice, easier than I thought it might be

Funeral tomorrow. 10 people due to lockdown restrictions

There may only be 10 people there in person, but there is an army behind you.