The family of Daisy and Tim Lommers experienced the worst thing that can happen to you almost two years ago. They lost their son Lio, he was fourteen months old. Lio had a rare disease that caused him to have growth problems and difficulty eating. He spent most of his short life in the hospital. He underwent seven major operations in four months, after which he died of complications.
But Lio has definitely not disappeared from the lives of Daisy, Tim and their son Nino (6). Tim: “When we write a card, we always include his name, with an asterisk or a heart behind it. It feels strange for us not to put his name on it.”
When Lio’s name is not mentioned, it hurts. Daisy is pregnant again and the family received congratulatory cards: “Then sometimes it says ‘For Daisy, Tim and Nino’ and Lio is not mentioned anywhere. You know damn well he belongs, why don’t you just put his name there? Or people say: ‘You’re having a second baby’. No: a third! Because Lio will always be part of it. He is not replaced, he simply exists.”
“When we talk about Lio, it is too intense for many people.”
Sunday is World Lights Day, the day on which deceased children are remembered and that is important, Daisy thinks: “Lio is our child. He is just part of it and always will be.” According to Daisy, talking about a deceased child is taboo for many people: “When we talk about Lio, it is too intense for many people. Sometimes they don’t dare to mention Lio’s name and that hurts a lot.”
Because it is World Light Day, a book is being published. Daisy and fourteen other mothers tell their story in it. Daisy writes about Lio’s illness, but also his death. “Lio passed away in our arms on the evening of January 7, 2022 at 6:35 PM. The moment the doctor declared death, I screamed. It went through my marrow and bone! We broke into 10,000 pieces from so much pain and sadness. Then everything that was attached to him was permanently removed: tubes, adhesives, his MIC-KEY button, the Broviac line. We wanted to have everything and keep it.”
Writing this down like this was very difficult for Daisy. She put it off as long as possible. But through the book she had contact with other mothers. They encouraged each other and gave comfort: “Someone who has not lost a child does not know what it is like. How could we ever say to our child, ‘Go ahead, it’s okay?’ Giving your child a last kiss. And then close the basket forever. If you haven’t experienced that, you don’t know what it is.”
Now Daisy is pregnant again. But it is very different for her than the previous two times. “We sometimes say: life had a lot of color. But now that Lio has died, the color has disappeared. We do everything. We laugh, but we don’t enjoy it anymore. Not like before. Because you know: you can lose him too.”
“We assume that your brother will continue to live.”
It is also an exciting time for Nino. “Nino sometimes asks me: ‘Will this one die too?’ And you can’t say, ‘Of course not, are you crazy? This one just stays alive.’ Because you don’t know. So we say: ‘We assume that your brother will continue to live’.”
Daisy, Tim and Nino hope to draw inspiration from Lio’s life. They will always remember Lio’s laughter. “Even with his intestines out of his stomach, he went to the operating room smiling. He has been through so much, was so strong. Nino called him SuperLio. Because of the strength he had, we can continue.”
More information about the book ‘With without you’ can be found here.
