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In addition, the Hero4Heroes foundation was established in Jahraino’s name to raise money for research into his type of brain tumor. Jeffry: “When he was alive, we promised him: even if you are no longer here, we will put you on a pedestal and we will not forget you. The foundation is one of the ways we do this. And fortunately that is going well.”
“Furthermore, it is sometimes very heavy,” he continues. “Our friends’ children are getting older, one of them was about the same age as Jahraino. It is of course nice to see her grow up, but also very difficult. Your own child will no longer experience that growth and development. That is just hard to comprehend.”
Hand in hand
The past year and a half have been tough for the couple. They take blow after blow, but manage to keep each other in sight despite all the misery. “That’s one of the first things we said to each other after his diagnosis: we’re going to do this together,” says Jeffry.
“Stand next to each other hand in hand, not opposite each other. We were both involved in every decision, and that was a good way for us. But that doesn’t mean it was easy. Sometimes we had to give each other space, to really feel all the feelings. That is difficult if you feel like you are constantly being dragged from left to right.”
In the Netherlands, one in four children with cancer still dies. In September, the month of childhood cancer, the Princess Máxima Center for Pediatric Oncology calls for extra attention for this disease.
New dynamics
Gradually they try to find some structure in life again. They have started working again and build up their hours slowly, with the necessary space for ‘bad days’. The new family composition takes some getting used to, just like the new dynamics in their social circle. “You inner circle gets smaller, but tighter during such an intense period,” explains Jeffry. “But not everyone knows how to react to something like that.”
“They fill in things for you, or don’t dare say anything at all,” adds Jo-an. “I always say: I prefer that you just address me, than that you look at me and then walk on. That is much more annoying.”
She does have some advice for parents with seriously ill children. “Listen to your gut feeling and don’t just let a GP send you away. And perhaps even more importantly: look first and foremost at your child’s needs. Really listen to him or her and only then make your decisions.”
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2023-09-03 05:08:47
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