University

Love outruns loss

Running for Riley

Irish PhD student Karen Mohan lived a beautiful, happy life in Namibia. But when her daughter suddenly died, grief split the earth beneath her feet. So Karen ran. Now, she runs for Riley.
By Megan Embry

On her first birthday, baby Riley – with her bright, dark eyes and her ready, toothy smile – was happy to be the center of attention. Her parents threw a huge party; every person Riley had ever charmed was in attendance. ‘That was one of the things about her’, her mother smiles. ‘Everyone just loved her. They had so much time for her. Even adults who didn’t like babies liked Riley.’

It was 2015. Irish PhD student Karen Mohan lived in Namibia where she and her husband, Amit, doted over their new daughter. On September 24, nine days after Riley’s birthday, Amit delighted his little girl by coming home early from work. ‘I specifically remember that night’, says Karen. ‘She was so full of beans, dancing with her bum up in the air.’ They gave Riley a bath and put her to bed, clean and loved and happy. She would never wake up.

Losing Riley

‘I feel like I must have had some idea, somewhere deep down’, Karen says. ‘I knew it was ridiculous for a one year old to have this big party; she won’t remember it. We even got a bouncy castle.’ But the party became a gift from Riley to everyone who loves her. ‘It was an opportunity for everyone to spend a last day with her, together. It was a really joyful day; a happy memory that everyone can share.’

I somehow just knew – even before I opened the door

On that awful morning in late September, Karen got up to meet a friend for a run as usual. She snuck around, trying not to wake Amit or the baby. But when she returned, the house was still. ‘Normally Riley would make noise in the morning and jump around in her cot. I somehow just knew – even before I opened the door.’

Riley had died in the night. The terrible days that followed left Karen and Amit with more questions than answers. Doctors couldn’t say what had happened. Nothing had happened; everything had happened. For the first time, they learned about Sudden Unexpected Death in Children (SUDC), which is just a way to categorise a death that doesn’t have an explanation. SUDC is devastating, says Karen. ‘You are left with nothing.’

Loving Riley

Riley was special: a ‘crazy, interactive little thing’, Karen remembers. ‘We liked to say that she was full of life, and full of joy – but she was also a really old soul. You would look into her eyes, and it seemed she had such an understanding. It was just incredible.’

One hard thing about losing a child is that her memory can become wrapped in sorrow. ‘But she was a really positive thing’, Karen says. ‘I never want her to be remembered as something negative that happened to us, or as a tragedy. She was here, for a year and nine days, and they were incredible.’

Karen and Amit wanted Riley’s memory to be as happy and meaningful as her life. So they found a place to support other children in her honour: Hope Village Namibia. Hope Village is an orphanage founded by pastor Marietjie de Klerk in 2004.

After working with Mother Teresa, De Klerk returned to Namibia to help children. She now provides a happy, supportive home for over ninety kids, many of whom are affected by HIV/AIDS. Karen visited shortly after Riley died, and has been devoted to Hope Village ever since.

She wants other kids to have what Riley had. ‘Riley had such a happy little life. She had lots of love, she had everything you could possibly want. She never had a day where she was hungry, or even where she didn’t have parents gazing lovingly at her all the time. You know?’

Living without Riley

The couple realised they could also honour Riley by courageously pursuing their own dreams. Karen had always wanted to do a PhD. As an undergraduate, she fell in love with Groningen during an exchange year with the faculty of law.

So when she found the ESSENTIAL project – evolving security science through networked technologies, information policy, and law – she knew it was a good fit. She and Amit decided to move to Groningen.

‘I don’t like to think of it as a new start’, Karen says. ‘We aren’t leaving Riley behind. It’s more like the next chapter of a very big book for us.’

They say it’s just such an indescribable loss, you can’t make a word for that

 

But in the Groningen chapter, few people know Riley’s story. ‘That’s really, really hard’, Karen says. ‘It’s extremely hard to put into conversation, so you are often stuck in situations that are really difficult.’ Like other bereaved parents, she wishes there was some natural way to introduce herself that would also introduce that fundamental part of her identity: Riley’s mom.

‘They say it’s just such an indescribable loss, you can’t make a word for that, like you can with orphan, or widow. But there is also all this love and all this pride – I love my daughter more every day. So sometimes when there is no word it’s almost like saying she didn’t exist.’

Elin

This new chapter of Karen and Amit’s lives also has a lot of good written into it. Their second daughter, Elin, was born in Groningen on January 27.

At first, Karen says, the new baby was de-stabilising. ‘I found it quite difficult; you go from mothering a child who isn’t here to doing that very physical mothering again for someone else. I found I was afraid, almost, that Riley would be forgotten’, she says. ‘And it could be deeply confusing; sometimes it almost felt like it was Riley again.’

But today, standing in her living room with Elin in her arms, Karen looks comfortable and sure of herself. Elin nuzzles into her mom’s shoulder – ‘we call it her perch’ – and gazes out into the room with discerning eyes. Her hair is full and dark and untamable, like Riley’s, and she has the same extravagant, Disney-princess eyelashes.

But Elin is clearly all her own self: a new, irreplicable soul. Riley’s little sister.

Running for Riley

Elin will join Karen and Amit in Namibia at the end of the week for a relay to honour Riley and raise money for Hope Village. The family will be back where their story started, back where Karen first embraced running for her daughter.

‘After Riley passed away, I just wanted to do something – anything. So I established Running for Riley. It was just me at first. I had only ever done a half marathon, but after she died in September, I decided to do a 56-kilometre marathon that April. Then at the end of May, I also did the Comrades ultramarathon, which is 90 kilometres.’

Karen ran to raise money for children’s charities, but also to ground herself. The intense physical and mental demands of long-distance running were cathartic. ‘You could run through the pain, and there was a beginning and an end to it.’

‘Running for Riley’ has grown to include friends and family in Namibia, in Ireland, and all over the world. This year, Karen’s old running group has organised a massive ‘Relay for Riley’ in Namibia. Thirty-eight people in eight teams will cover the 372 kilometres from Windhoek to Swakhopmund – all for the love of a little girl.

In the end, only love can outrun loss. ‘Your memories will fade, but love doesn’t’, Karen says. Loving Riley carries her forward, one kilometre and one chapter at a time. ‘It’s the love you have to hold on to.’

What you can do

How do you support people who have experienced terrible loss? Karen says: ask about their person, not their tragedy. ‘Of course it’s a loss that we will never, ever get over – but the most important thing is that she was here.’

Parents love to talk about their kids, take a million pictures, celebrate everything. But when a child dies, ‘suddenly, overnight, it’s like you can’t talk about your kid anymore. I think for any parent who has lost a child, you just want to remember them and you want them to be remembered.’

Promote global awareness of SUDC

SUDC is not a well-known category of death, in part because it’s very rare. Unlike sudden infant death syndrome (SIDS), which affects maybe 1 in every 2,000 babies, SUDC effects only 2.4 in every 100,000 children between one and eighteen. Many parents who lose children this way only learn about SUDC afterward.

‘For parents like me, and any of the parents that I know through the SUDC foundation, we literally thought “oh, we’re in the safe zone after a year”. You have no idea this can happen. There is just no awareness.’

But there is a privately funded SUDC foundation in the US doing amazing work, says Karen. ‘This is a really specific kind of suffering, but the foundation provides a lot of support. They offer counseling services, genetic testing, and research resources. They even sent a gift when Elin was born.’

Check out the SUDC foundation here.

Contribute

The Relay for Riley team hopes to raise N$100,000. All the proceeds will go to Hope Village orphanage. Thirty-eight people in eight teams will run the 372km relay in Windhoek, Namibia on Friday, July 6. You can follow the event on Facebook.

Help them make it across the finish line in Swaphokmund by donating here!

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