10 years on from hearing those words 'Neuroblastoma Cancer'

So it is 10 years since I first heard the words Neuroblastoma Cancer which ripped our families lives apart and has forever left my heart shattered. 10 years since I had to put those big girl pants on and learn how to 'dance in the rain'. To learn how to adapt the life I thought was evolving and take a different turn.
I suddenly gave up work for 2 1/2 years. I was in my prime....going places...it came to a halt. I had to learn to not plan or at least learn to accept if a plan happened that was a bonus. That was so hard...just as it has been for everyone over the last 18 months with the COVID pandemic.
But going back 10 years, Callum was 2 and Harry 4. Those toddler years and tantrums drawing to a close and a more sophisticated life was on the horizon. It was like a record being scratched in the middle of a symphony. Living with Harry's cancer meant being up in the night again, sleepless nights....this was how it was for 2 1/2years. Even when he was well I would lie awake wondering how long the good times would last.....but just like Dory we had to 'keep swimming'. Living with the knowledge that Harry was terminally ill...never knowing quite when his time would be up...feeling elated he reached his 6th birthday ...I mean that's a topsy turvy world.

But yet within those 2 1/2 years that Harry had cancer we met some amazing people; had the best times and soaked up the phrase 'live every day as if it was your last.'

Friends pulled out all the stops and enabled us to creat some fabulous memories. Those memories are recorded in photo books that Lucy likes to look at, enabling her to get to know the brother she'll never meet. This has a flip side as she knows about death already.

Life froze after Harry died...the fog set in and I know Harry's death deeply affected so many and I think I realise this more so now than I ever appreciated at the time.

Grief is consuming....it us under estimated...taboo...not talked about. Grief can be so debilitating...society does not have a healthy place for grief and yet to grieve and be supported to do so can really help us learn how to live with grief...to walk along side grief rather than letting it consume us or affect us physically.

So Harry died in 2014 and the last 7 years have been about how to live a different life to the one I thought I was going to live.

I never ever thought I'd be a mum again at 41. I'm not going to lie...for me being a parent in my 40s has been hard on so many levels. Lucy is a force to be reckoned with and I do let her get away things the boys never did....but then the pandemic hasn't helped.

I started 2020 with so many plans, the move again to a more sophisticated life was on the horizon, I was planning nights out, fun things just for me...but COVID happened and again life took a twist.  All those coping mechanisms myself and my family had developed came crashing down. Our annual trip away over Harry's Angelversary was not possible....nothing felt possible...at a point when the last thing I wanted was to spend time just with my household...that's exactly how the forthcoming weeks was played out. I was ready to be a social butterfly again...but the world came to a halt.

Grief set in again in a different way. Trauma revisited as COVID triggered memories of how life in 2011 came to a halt.

Last year was a rollercoaster... lockdown..eat out to help out....the tiers system..lockdown...then the road map...oh yay we can plan...but oh no you can't, because bubbles then collapsed left right and centre.

We are now in a period of uncertainty for so many reasons, but at least I'm getting out and rebuilding a life. I'm not sure what my coping mechanisms are any more, but I'm learning and adapting.

I'm definately a different person. I'm very aware of the fragility of mental health and how we need to break down the stigma still associated with this. It's acceptable to take time off for physical health issues, but for mental health and self care, to help repair and heal...there is still a very long way to go.

I have learnt to live so much more in the moment and have learnt the value of mindfulness. Learning that if I can't control situations I can control how I react to them....learning that I have no power over the hand of cards I have been dealt, but I do have power as to how I play those cards.
I have learnt what it's like to be on the other side of a social care assessment and continuing health care....to feel that exhausted carer with not much left to give and though I wish I did not know, it has given me a depth of insight into the daily lives of many of the people I try and support on a professional level.

I also experienced the benefits of the benefit system, but also the perils that people talk about...for we got a letter several months after Harry died to say they had paid us too much and we found ourselves owing money back...to this day we still don't know why...But we fought and lost and paid the money back over a period of time....thankful to be back in employment and no longer in need of the complicated benefits system!

So, I wonder what the next 10 years behold. The greatest tool to have is learning to adapt, accept those different paths and remember to Live, Love and Laugh.