She blew out three candles, in a hospital room full of love. There was cake, there were garlands – and at the same time her parents knew that this would be her last birthday. Bram and Ingeborg from Best tried to give everything to their daughter Floor in those weeks, which was still possible. “You celebrate the life of a child that you have to let go. That is the most difficult thing there is.”
During their daughter’s pregnancy, everything seems to be going well at first. But when Bram and his wife Ingeborg go to the hospital to run the child, they get worrying news unexpectedly. “There would be something wrong with her kidneys,” says father Bram. They are forwarded to the Academic Hospital in Maastricht, where the diagnosis is confirmed: their unborn daughter has enlarged kidneys. Floor will be born on 6 May 2013.
After her birth there was little of the pink cloud left. Floor is immediately transferred to the Nicu, the Intensive Care for newborns. “The doctors were afraid that she would have too little kidney function. But slowly, she went better step by step.”
“From the first moment the doctors said: this is actually a lost cause.”
Floor was a wonderful toddler, cheerful, sweet and with a smile on her face. Big brother Tim was proud as a peacock and seemed to intuitively understand her vulnerability. “As if he knew that life with her was not obvious, especially when she regularly had to go back to the hospital for her kidneys.”
But when Floor is 2.5 years old, her health suddenly deteriorates. “She started to surrender. We first thought it had to do with her kidneys.” They go directly to the hospital, where neurologists investigate her. The result is heartbreaking: there is a tumor in her brain, as big as a tennis ball. “The cancer had nothing to do with her kidneys. It was really double bad luck.”
Floor will be operated on 12 April 2013. Drains are placed to remove the moisture from her brain. “As a result, she had less pain, and stopped vomiting,” says Bram. But there is no hope for healing. Due to her young age and the existing kidney problems, treatment is not an option. “From the first moment the doctors said: this is actually a lost cause.”
Even life -stretching treatments would only make her sicker. “She would lose her hair, just lie in bed, and probably have a lot of pain. Then we as parents had to decide: what we do? But we knew that she would die in the short term anyway.”
In the weeks that Floor is in the hospital, Bram and Ingeborg seize every opportunity to be together with their daughter. “We wanted to make something beautiful from every moment, no matter how small.” Cliniclowns come by, the hospital employees play the guitar at the foot of her bed and despite everything, it is even possible to celebrate her birthday.
Floor will be three years old on 6 May. The hospital decorates the meeting room of the children’s department, and together they eat a cake. “Of course it was very double. You celebrate the birthday of a child that you have to let go soon.”
“There was a beautiful aquarium in the hospital, and Floor thought it was really great,” Bram recalls. “But because of the drains, she could no longer get out of bed. Yet the nurses did their best for her. She drove her, with bed and all, through the hospital, just so that she could take a look at the fish. That touched me enormously. It was such a small gesture, but with so much love.”
The people who come to the hospital to support Floor, see a cheerful and happy girl. “She was sweet, she laughed, and despite everything she could also be a child.” But on May 23 it suddenly deteriorates fast.
Floor will suffer from seizures that day, because the tumor in her brain is growing. The doctors give her morphine to remove the worst pain. “And then you see your daughter lying there. She craved breath. The sisters said she was not in pain, that reassured me somewhere. But you do see what happens. Your child, in bed. That hurts.”
“You want to give her love, but see her breaking.”
What Bram perhaps touches the most is that there is no softer way to say goodbye at that time. “Because Floor was so young, she was not eligible for euthanasia. So you see your child suffering. You have known for weeks that the end is coming, and then it happens this way. That’s just terrible. Nothing is human about that.”
“We knew she could no longer be saved,” he says. “But then as a family, and Floor himself, you still have to go through that final phase. That was the toughest of those whole six weeks in the hospital. At one point I thought: who is we actually fooling here? We are waiting here next to her bed, while we know she will die there. You sit there, and you only want to give her love.
Floor dies on 24 May 2016. She is then three years old. “It may sound strange, but after her death a certain peace also came over us. Of course we had a lot of sorrow. But we had already felt so much in the hospital in those six weeks. We knew what was coming. We could have said goodbye.”
The moment Bram and Ingeborg leave the hospital feels unreal. “You come in with your daughter and you leave without her again. That is empty.” Yet they have to continue. Their son is six years old at that time, and they also have a baby daughter at home. “So we went on. We even went on vacation that summer. That feels very bitter, almost like it’s not right. But you live on. For your children, for each other.”
“We all know sorrow and pain, also as a father”
Bram and Ingeborg do not shy away from the difficult conversations. “Our children may know what happened to Floor. We are talking about it. It belongs to our family, who we are. And no matter how painful it is, it is also love.”
His own grief has also been given a place. “The mother’s sorrow is often the first to look at the sorrow of the mother. But there is still that image that you have to be strong as a man, you have to hide your emotions, the tough guy must be. But we all know sadness and pain. You can take that space in your own way. Sadness is part of it. Certainly if you lose your child.”
“That’s how Floor continues to live, even though she is no longer there.”
Bram does not sit still in the years after the death of Floor. “I like to tell about Floor, about the sweet child she was,” he says. He is committed to the Kidney Foundation and raises money for research and support. He also writes a poem for World Light Day – a commemorative moment for deceased children.
“Coincidentally, Harry Hendriks, a musician, was in the room,” says Bram. “He later made my poem the song ‘Room in my head’. That really felt like a gift.”
By continuing to tell about Floor, the sadness also gets a different side. “The loss remains, of course. But it also brings me something. It will belong to me for the rest of my life. And that doesn’t have to be completed either. I believe: you are really gone when you are forgotten. And in this way Floor lives, even though she is no longer there.”
