Awesome Agnes and Me – Why I decided not to share the pain

Agnes: the tall, angelic, intelligent, take-no-bullshit mama friend who just gets it. She gets it every time. She’s awesome.

We can talk about everything and anything.

However, I (thought I) broke her heart. I told her about J when J was a few months old. I didn’t tell many people as I was still processing my news. Some short time after, she said she was pregnant and then I really, really wished I hadn’t told her anything because she would inevitably have worried a little more than she needed to.

But that didn’t break her. She was ok just always concerned.

Several months later, I told her about Booboo the bear and I this broke her heart. This mama bear didn’t back away or stay quiet or disappear as many have done and she’s always known what to say. This helps enormously.

It doesn’t help that I know the hurt I carried in myself spilled over and fell into her life too. And she has felt it too, because Agnes is a thinker and a processor. She doesn’t park a person and carry on with her life. She’s not superficial.

I decided not to tell too many people after this. There was too much going on and all happening very quickly. There was too much pain. As much as I wanted to scream all sorts of things from the rooftops, I didn’t want to hurt anyone else with our pain. We needed practical steps. Most importantly we didn’t want anyone else to hurt in the way we were so deeply and overwhelmingly hurting. So we have kept things in (for perhaps too long) but will continue to as we have young children and we don’t want them affected by our pain either. (More on this in another post some day).

Agnes. We love you. Thank you for being there and here and everywhere. Thank you for sharing the pain.

The day we found out

I’m new to blogging and have very little knowledge of what to do or how this all works. Please ‘bear’ with me (no pun intended).

29th August – I woke up happy this day. Life  was good. My kids were awesome. All we needed to worry about was JJ’s hearing and balance and walking. I was looking forward to ‘Big Sisters’ first day at big school.

This is the day we found out booboo bear has cancer. We went for a scan together and were called back in and we broke down in shock and tears and anger and confusion and disbelief. I’ve realised I have to start somewhere with this blog and as I type I realise that I’m going to leave chunks of stuff out as I don’t want to relive it.

The purpose of this blog is really just to update you all on what’s been happening without having to have the same conversation over and over again and without you feeling obliged to immediately respond to a text or whatsapp. It’s gettint harder and harder for me to talk text call or anything. My time is sucked into this whirlpool of hospitals and trips and twins and school runs and lunchboxes etc.

The night of August 29th I got into bed and I cried quietly, sometimes uncontrollably, all through the night. And this carried on for a few nights. We were rushed immediately from our local hospitpa to Great Ormond Street Hospital for Children where we stayed for over a week and a half. We have spent a lot more time at hospitals over the last 7 weeks. She has been under general anaesthetic at least 6 times already. She’s had a Hickman Line inserted and all sorts of other things which I may cover in another post. Bone marrow aspirates. Biopsies. Bloods. Cultures. Scans. MRIs. Mibg. And three rounds of chemo…which we have recently been told haven’t worked as well as they should have. Cue more heartbreak.

I also missed big sisters first ever day at big school. I had been looking forward to this milestone for years.

About us

We are a family. There are 5 of us. Our family is full of love and laughter and we are on a pursuit to create great memories. We keep our emotions happy in our moments together and when you put those moments together they make memories. We want our children to have memorable childhoods.

Our three little bears are

1. big sister (she’s the boss) 2. JJ (she’s sociable and loud one) and 3. Booboo bear (who is cute and cuddly).

These three mean the world to me. I decided to create this blog for two reasons update everyone on things in one place in one go and 2. When my girls look back on the journey they will know it mattered enough for mummy to document

I guess the most important to thing to know with respect to this blog is that I hope one day someone finds some support from it. We are in a very unique and sad position of having twins with significant health issues. All these words…when what I’m trying to say is Twin 1 is severely disabled and has had and will have ongoing operations and Twin 2 has stage 4 metastatic cancer (neuroblastoma).

Trying to make sense of it all, and I guess in an attempt to normalise it, I asked a specialist consultant if he had ever seen anything like this before in one family – he said ‘It’s unheard of to have this many unrelated things going on in one family. It’s utterly devastated us all. You’re such wonderful parents. We are devastated for you. It’s unfair and life can be so so cruel. We are thinking of you all’.

And so begins this chapter of our story…