Still Sam's Mummy

4 hours ago
5 min read

I never imagined that when Sam was born so healthy and perfect, that just over five years later I would be arranging his funeral.

Five years ago today — 10 June 2021 — Sam’s family, friends and teachers gathered together to say goodbye to the most beautiful little boy.

Sam's Church Service

The night before Sam's funeral, I decorated the church with his paintings, drawings, dressing up clothes, scooter, bike and all the things that were just Sam. I just needed the church to be all things Sam.

I remember the funeral car pulling up outside our house with Sam’s coffin inside. I honestly could not comprehend that my little boy was in there. It felt like I was watching someone else’s life from afar.

But then I saw the tiny pot of wildflowers I had picked for Sam sitting in front of his coffin. The flowers were placed inside a miniature plant pot he had painted the year before. I still can’t believe the funeral home remembered to bring them. And they were as fresh as the day I picked them three weeks previously.

I remember the journey to the church.

I remember walking in front of the funeral car with Sam’s dad.

I remember carrying Sam’s coffin into the church with his uncles, with The Lion King playing.

I remember seeing all the faces of people who loved him.

And I remember giving Sam’s eulogy.

I know people expected me to crumble. My voice broke only once — when I said I would never again hear him call me mummy. But there was no way anyone else was ever going to share my son’s story. No one could have done it like his mummy could.

I truly don’t know how I got through that day. It was a mummy superhero power. I had to get through it. I had to get through it for my boy.

The following morning, I woke up. And the pain was simply too great. I couldn’t understand how I could survive life without Sam. This was my life. Waking up every morning - remembering that Sam wasn't here. He was my life, my heartbeat, my everything. I honestly didn't want to be here without Sam. I was frantic that he was scared without me. Frantic that he needed me. Frantic that he was somewhere without me to protect and comfort him.

And I simply couldn’t understand how the world was still turning, still continuing when my son had died. I was so angry.

The Last Five Years

Over the last five years I have lived in survival mode — my mind is still unable to fully process how a perfectly healthy five-year-old little boy could be gone within seven short weeks. To something that had never been on my radar, yet was so catastrophic...Febrile Infection Related Epilpesy Syndrome.

I miss Sam every single second of every single day.

I miss his belly laughs.

I miss his cuddles.

I miss his kisses.

I miss hearing “I love you mummy.”

I miss physically being his mummy.

And I miss the life we built together.

Five years on, the grief is still very much there. It may be along time for you - but for me it's just like yesterday. It is never far from the surface of the face I portray to the world. It lies just beneath my survival mask.

Some days I feel I can manage it better than others. Other days it still paralyses me, and when I wake up, I don't want to get out of bed and face the world. I want to be with Sam.

Grief is a paradox

True grief is truly exhausting. It is deeply painful. It never goes away.

But at the same time, I don't want it to. It's my physical link with Sam. My physical reminder that Sam lived for five precious years and I was his mummy. That I loved him so deeply that not even death can separate the love I have for him.

That is the paradox of grief. It's all the love I still carry for my son. So why would I ever want it to go away?

What do I miss other than Sam?

Beyond missing Sam with every fiber of my being.

I miss the feeling of contentment with my life. I know I will never feel true contentment again. I miss sitting back in a chair on a summer’s day and thinking, you know what “life is good".

I miss the feeling of uncomplicated joy.

Any happiness I feel is always swiftly accompanied by the reality that my son died. That reality is never far away. It's there at the end of a nice day with friends. It's there at the end of a night out. It's there at the end of holiday. It's there when I wake up in the morning and when I go to bed at night.

I always end up going back to my reality - my beautiful son died.

But alongside the pain, there is also gratitude.

Gratitude for the incredible people who have come into my life since Sam died.

Gratitude for the supporters of Sam’s Superheroes Foundation who have enabled us to achieve more than I ever thought possible in the four short years we have been founded.

Gratitude that I had five precious years with the most extraordinary little boy.

Gratitude that Sam is still with me — guiding me, loving me and protecting me from afar.

Gratitude that people who have never met SAm, feel like they have and they love him just like he was still here.

And gratitude that Sam chose me as his mummy and we loved each other unconditionally.

Today Feels Fitting

Today, it somehow feels fitting that we are holding our first practice session for Sam’s Scootathon — our annual 55-mile, two-day Birmingham to Mickleover kick scoot raising funds and awareness for NORSE and FIRES.

We are also seeing news outlets pick up and share our £110,000 research collaboration with the Epilepsy Research Institute - thank you Sarah and Penguin PR.

While today my heart aches more than usual, continuing Sam’s charity work gives me purpose. It is a way of still being Sam’s mummy, even if it looks a little different now.

Thank you for choosing me as your mummy, Sam.

I will leave you with these beautiful words: