When Grief Comes Back Screaming

Aug 24

6 min read

Hello everyone,

I've been very conscious that our social media has been a little quieter over the past few months. Posts have been fewer, updates haven't always come as quickly as I would have liked and I've not been quite as present as I usually am.

The truth is, five years on, my grief has come back loud and screaming. My heart, in fact my whole body, is aching for Sam. ❤️

And there is another part of grief that I am struggling with too - which is knowing who I am. I simply feel like I don't fit in anymore - I am on the periphery of everything, from friendships to life in general.

I am a completely different person since Sam died. Of course I am. How could I possibly go through losing my only child and remain the person I was before? I am just not sure who I am now, and I'm trying to figure it out. But what I do know, is that I am still 'Sam's mum'.

Where I've Been

So firstly, thank you for sticking with me. And I hope you'll bear with me while I have had to take a little time out, for me and for Sam.

Child loss is an unknown journey. There is no map and certainly no straight road through it. It's more like a spaghetti junction of emotions that can change from one day to the next, and sometimes from one hour to the next.

Grief is a little like carrying a very large, heavy stone on your back. The stone never goes away. You learn how to carry it. You get stronger. You find ways of living your life with its weight there. There are even times when you're so used to carrying it that, for a while, you don't notice quite how heavy it is.

And then something changes.

Suddenly that same stone feels impossibly heavy again. Your body aches beneath it. You become unbelievably tired, physically, mentally and emotionally. Everything becomes harder and life takes so much more effort. Sometimes, even just getting up in the morning, replying to messages, answering emails, or taking phone calls feels impossible and overwhelming.

And I'm learning that you need to put some things down for a while, because carrying the stone is taking everything you've got.

So that's a little bit about where I've been recently.

Life Has Changed Too

And, there have been other changes too. In February, my beautiful counsellor, Cheryl, who had been by my side since Sam died, sadly died herself. She had walked alongside me for almost five years as I learnt how to live with the unimaginable. She knew my story, she knew Sam, and she knew my grief. But more importantly she was the most amazing, caring and kind person, who helped me survive the first five years without Sam - when I truly didn't think I would. I miss her. At the end of our therapy sessions, we always prayed together, and that truly gave me so much strength.

I'm incredibly grateful to have now met a wonderful lady called Debbie who is supporting me personally through counselling, as well as bringing her experience and specialist support to the work we do through the charity.

Five Years On - The Reality

In reality I think I've reached a point where the trauma and the grief are meeting head on. The trauma at witnessing the horrors of what my son went through for 7 weeks, how life can change in an instant, and trying to live life without him.

Five years on, I'm beginning to realise what life without Sam physically here actually looks like. Not just today, or this year, but the years ahead. And quite, frankly, there are no words that do the enormity of it justice, it is such a horrible reality, but I am doing my best to find some light and hope.

I have been trying to work out what mine and Sam's future looks like. Whilst Sam died, he didn't stop being my son. And I didn't stop being his mummy. I don't want a future that somehow leaves him behind, or where 'home' doesn't feel like 'our home'. I need to find my own personal way of carrying him forward with me - not only through the charity or the things I do in his name, but simply as my little boy, still woven into every part of my life.

How do I keep him part of my everyday? How do I continue being Sam's mummy when he isn't physically here? And, how do I navigate milestones without feeling jealous, not because I don't want those things for other people, but because I desperately want them for Sam too. I see everyday what 'my life could have looked like'. And, I suppose I am grieving what Sam (and me) should have had.

I don't have all the answers. Perhaps this is something I'm only truly beginning to work out.

What I do know is that I miss my little boy desperately, in every single moment. Five years feels like such a painfully long time since I held him, heard his voice, felt his little hand in mine and saw that beautiful smile — and yet somehow it feels like no time at all since he was here. I just want time to stand still.

Perhaps the depth of my grief is simply a reflection of the depth of my love. And how incredibly blessed I am to have known a love so enormous.

We've Been Quiet, but Incredibly Busy!

But quieter on social media certainly hasn't meant quiet behind the scenes.

There has actually been so much happening and I have included a snippet below.

A PhD researcher has now been recruited for our co-funded £110,000 NORSE and FIRES research study, which means this incredibly important research will be starting very shortly. A huge thank you to Professor Torsten Baldeweg and Dr Marios Kaliakatsos for everything they are doing to help make this possible.

In July, I also had the privilege of speaking at the NORSE Institute Conference, joining the Family Panel and sharing my lived experience as Sam's mummy. These conversations aren't always easy, it was incredibly difficult, but I know how important it is that the voices of families sit alongside those of clinicians and researchers as we work together to improve the future for people affected by NORSE and FIRES.

Closer to home, we've funded horse-assisted therapy sessions for one of our families in Peterborough, awarded a £400 grant to a family in Leeds, and funded family support with our specialist epilepsy nurse and trauma-informed counsellor Debbie Dean.

And, of course, Daisy continues to work her magic alongside Tara Pegley-Stanger who leads our Therapy Dog work. Between them they visit seven schools each week and supporting children who need her. 🐾❤️

There is so much happening that I'm incredibly proud of — even if I haven't always managed to tell you about it.

Blessings, Love and Gratitude

And amongst all of this, there is also so much I am grateful for.

I'm grateful for the people who continue to walk alongside me. For Debbie's support. For everyone who gives their time, energy, expertise and love to Sam's Superheroes. And for every single person who donates, fundraises, shares one of our posts, or simply says Sam's name.

I'm grateful that, because of so many wonderful people, something created from the most unbearable loss is now helping families, funding research and making sure NORSE and FIRES are better understood.

And above everything, I am grateful that I am Sam's mummy. Those five years with Sam, were the happiest time of my life. A time when I felt unconditional love for the first time. I am sure that Sam does not realise what he brought into my life.

Gratitude doesn't make my grief smaller. It sits alongside it. Just as love does.

Sam's Scootathon Preparations

And now preparations for Sam's Big Scoot are in full swing. 🛴

And while I've been a little quieter, Sam's Big Scoot is very much happening! 🛴❤️

On Saturday 19 and Sunday 20 September, 15 of us we will be kick scooting 55 miles from Birmingham to Mickleover in memory of our little superhero. And what a fantastic bunch of people they are!

Final Thoughts

The timing of this latest wave of grief isn't exactly ideal! But grief doesn't have a calendar that it sticks to. It doesn't look at what's in the diary and decide to come back when life is a little quieter.

It comes when it comes.

So that's what I've been doing, giving myself a little time and space to carry that stone, while continuing to make sure the work we started in Sam's name carries on.

Thank you for sticking with me. Thank you for your patience and kindness if I have dropped the ball a few times. Thank you for bearing with the quieter social media. And, most of all, thank you for supporting our charity and for continuing to remember Sam. That means more to me than I could ever put into words. ❤️

And finally, I'll be sharing lots more about our epic Sam's Scootathon very soon.

We are incredibly busy, but busy with purpose.

For Sam. Always. ❤️

Sam's Superheroes Foundation. For every family affected by NORSE & FIRES.