Guest blog: “It was a privilege to be Emily’s mother”

4 min read

This Mother’s Day, Lisa Smart shares a heartfelt tribute to the incredible daughter she loved and lost at the age of just 22…

 

 

There’s a wooden box on the shelf in the study that’s full of treasure. A raggedy old Eeyore, a bottle of Issey Miyake perfume, and a Mother’s Day card made with glitter and love. No diamonds or gold could be worth more.

My daughter Emily – my firstborn, my best friend – filled this box for me before she died. Her life was being cut short by a cruel, indiscriminate disease and yet her only thoughts were about us and how we would cope once she was gone. That was always her way.

It took me by surprise how much I loved Emily, the first time I saw her face. She was a tiny dot of a thing, not even 6lbs in weight, and yet she utterly stole my heart.

The strange thing was, I’d never been particularly maternal and hadn’t thought I’d have children. Until one day, in my mid-twenties, when I found myself gazing wistfully through the window of Mothercare on my lunchbreak.

After the pain of a miscarriage, Emily was an incredible gift.

But where mine took a while to kick in, Emily’s maternal instinct was strong from the start. She cradled her dolls like they were real and when her brother Ben arrived shortly after her fifth birthday, she was besotted. A little mummy in the making, fetching nappies and wipes. It didn’t surprise me when, years later, she declared that she wanted five children of her own.

When Emily got into Loughborough University to study business psychology, I was immensely proud. I missed her like crazy – our gym workouts, watching Strictly, afternoon teas, shopping sessions. But it made our time together even more precious, especially the girls’ holiday we took together every May.

In January 2018, Emily was by my side as I married her stepdad Paul, who had raised her from the age of 12. She looked radiant posing for photos with Nico, her adoring boyfriend who wasn’t scared off by a future that included five children. They were young but it wasn’t hard to imagine them being the ones getting married, raising a family.

In her second year at uni, Emily announced she wanted to do her teacher training after graduation. In her gap year she’d been a nanny and had worked in a nursery too. It made total sense, a job she was born to do.

Then, in March 2020, the COVID-19 pandemic hit and Emily was forced to come home. It was the one silver lining to lockdown – having my girl home again.

Studying hard for her exams, she started getting pins and needles in her hands and feet. The GP thought it was stress, we all did. But the sensation didn’t go away. Her feet went numb, then her tummy too.

A scan showed a long tumour in Emily’s spinal cord and a biopsy that October revealed a diffuse midline glioma located in the brain stem at the top of her spine. It came with a prognosis of a few short months.

“Am I going to die?” Emily asked the oncologist. “Yes,” came the answer.

What could ever prepare you for your child being handed a death sentence?

In a blur, we took Emily home and nursed her. But within weeks, she was paralysed from the neck down. Her tumour had grown so fast, she now had just weeks to live.

Typically, Emily’s thoughts turned to how she could help others. She started a JustGiving page to raise £125,000 to fund a researcher into her type of tumour, bravely sharing her story by dictating the words to me because she could no longer type.

I bit back tears as she told me what she wanted to say at her funeral. And then she had me write letters to all her loved ones. “Don’t forget Mum’s birthday is 14th January and that the date of Mother’s Day changes every year,” she reminded Ben in his.

One afternoon, Emily asked me to bring down some stuff from under her bed. There were some things she wanted to go to Nico, some things for her closest friends. And a wooden box she wanted to fill with memories for me.

When the pain got too much to bear, in March 2021, Emily spent three weeks in a hospice and I never left her side. One Sunday, a nurse came to wheel her bed to another room for some tests. But as we walked through the door, I was greeted with flowers, balloons and afternoon tea laid out. “Happy Mother’s Day,” smiled my Ems.

I knew in my heart this would be our last Mother’s Day together. I thought about the breakfasts she’d made me in years gone by, the kitchen looking like a bomb had hit it. The time I’d come home to find her cleaning out the fireplace because she wanted to earn extra pocket money to buy me a gift.

Emily passed away two months later and a part of me went with her.

Paul and I channelled our grief into continuing Emily’s fundraising to reach the target and I know she’d be proud. We’ll never stop raising funds and awareness.

Every day is hard without Emily but some more than others. Now, when Mother’s Day rolls round, I have a new tradition. I open the memory box Emily made for me, hold her beloved childhood Eeyore, breathe in the scent of her favourite perfume. I take out the Mother’s Day card she made for me at primary school and place it on the shelf in the study, next to her ashes, which will be buried with me when I die.

I only got 22 years with Emily but she made them the very best. It was my privilege to be her mother.

You can help us find a cure for people like Emily by donating whatever you can to fund the fight against brain tumours. Together, we can make a difference. To make a one-off donation or set up a monthly one, please click here

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